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I,ve posted previously, but have now obtained the actual MRI reports from my gp. Some was explained to me at the time, but a lot of this is greek to me.
Nuerosurgeons reading:
straightening of the cervical lordotic curve. There is some inpingement on the thecal sac between c4, 5 & 6. Congenital fusion of 5-7. Nueral foramina with some narrowing on right side at 6-7.
she has significant across both trapezius muscles into the erector spinae muscles of the back of the neck. (significant what????). They are tender. Roates neck less than 1 degreewith restriction secondary to pain.
reflexes are 2/5.
She does have quite a bit of spasm in the neck and straightening of the cervical curve which is probably secondary to congenital fusion. I have recommended over the door traction, switching from flexeril to soma. Suggest her primary care doctor have her see a physiatrist.
During the exam he showed to me to be alarmed by the frozen muscle spasms & showed me a pic of my MRI and pointed out where the curvature was non-exsisent as my c-spine goes straight up & down. He also showed me where my spinal sac is severly narrowed to the point of being almost non-exsistent in places. My gp's nurse read the report to me & she read psychiatrist where it reads physiasist. Therefore all my begging to see pain management has gone on deaf ears.
Spine clinics readings:
Old fusion of c5-c6. This is a congenital deformity. There is a loss of cervical lordosis, 3mm anterolisthesis, c2 onto c3; however, at c5-c6, there is an ostophyte complex causing mild effacement of the ventral thecal sac, left more than right, at nueral foramen.
Impression: moderate cervical spondylosis with up to severe c3-4 nueral foramina narrowing, partial fusion of c6-c7. The patient will go ahead & have an interlaminar epidural steroid injection.
I was told this:
I have a congenital fusion, a herniated disc above said fusion, bone spurs putting pressure on nerves. They told me that my x-ray results showed moderate to severe stenosis. Still waiting for my gp to release my x-ray report. Also waiting for 2 spine surgeons to realease their reports. So far they are ignoring the requests of them from my gp.
My syptoms are in my other posts. However I'm at my witts end & and so ready to throw the towel in as my quality of life has slipped into that of a disabled person. My girls have to help me shower, dress, cut my meat, sometimes help me drink as the left side of my face is numb now almost 24/7 & with more use of hans & arms I spill it down my front if I attempt it alone.
All of you "seasoned amateurs" out there - please, please help. Any observations, suggestions or thoughts are greatly appreciated & welcome. I'm hoping some out there can read greek!:confused:
X-ray finding as well now:
Cervicothoracic scoliosis major convexity left apex C6 measuring 15 degrees. Prominent facet arthropathy C3-4,C4-5,C5-6,C6-7. Anterior sublexation C4-5, 5mm. Disc space narrowing C5-6. Congenital efussion C6-7. Findings resuly in spinal and foraminal stenosis escpecially at C4-5,C5-6 bilaterally.
Hi! Still me - I wanted to apologize for saying "seasoned amateurs" as I meant "seasoned veterans". One of my many "problems" - brain farts as I call them because when speaking I'm not able to find the word I'm wanting!
Wanted to give my symptoms as I've been given so many different diagnoses I'm honestly at a loss.
Loss of motor skills & functions
Loss of balance (I fall 3-4 times a week - sometimes losing conciousness)
No neck moblity at all
Constant frozen spams in neck & shoulders
Tingleing & numbness of limbs - arms, hands, legs & toes.
Mental fogginess - not able to complete sentences
Memory loss - complete loss of conversations that my cell clearly showed happened
Constant muscle pain - sometimes left side & others right side
Loss of muscle strength - cannot open med bottles or hold things w/out dropping them
Constant dibilitating migraines that only differ in severity day to day

I wanted to explain also some of the diagnosis & explanations from doctors so far:
Spinal stenosis, spondylosis, bone spurs, severe arthritis with little to no cartilage between c-spine vertabrae & deterioration of bone matter (this they explained was the stenosis). Herniated disc, severe narrowing of spinal sac. I've had my gp throw around MS, atypical seizures & mini-strokes. There seems to be controversy why I have numbess of thr left side of my face. The spine docs say its a cranial nerve problem, nuerology says its from the pressure on my nerves & spinal cord in neck - saying there is a nerve in spine that affects facial nerves as well. Can you see why I'm so at a loss as how to proceed??
How has others found new doctors?? I'm scared as my gp has been my doc since i was a teen, delivered my children & I've been confident in putting my life in his hands. Until now - although I feel a great deal of it is miscommunication as his staff does not relay messages or let me speak to him. I don't know how to look for a new doc or what type to search out! Do I just pick one from a phone book?? I live in a town of 13,000 but do have 2 larger cities within 30 minutes & St.Louis 1 1/2 hours away. I treied on-line & was given 4 "free reports" on the docs I picked, but struckout as 1 was now only seeing prison inmates, 1 was only in office once a week & one was no longer in area & the other not taking new patients. I'm scared, frustrated & lost. I apologize if I talk to much or seem overbearing, but this site has been a godsend as I feel I finally have people to talk to who are going thru same issues & so I'm not alone. I do want to find a new doc that "has time" for me & if I need to start over so be it. I can not keep living this way as my girls should not have to be my caretakers when I'm only 41 & they need to be teenagers.
So please, any insight would be so appreciated. I,ve read other posts & have learned some new things from those - kinda renewed my fight. I want to get answers so I know what I'm fighting & so I don't end up in a wheelchair (which I feel is coming soon). One daughter is married & I want to be a hands-on Nana. I want as much of my life back as possible!! Thank you to all who read my posts & thank you in advance for any input!!
Hi Heather....let's start with an anatomy's the best way for you to understand what is going on in your neck. If you know this stuff already, please forgive me but others may learn from it.

Your spinal cord descends out of the base of the brain and into the spinal canal. The spinal canal is inside the vertebrae of the spine at the back of the bone.The much maligned disks are in the front of the vertebrae and in between them as well. That is why they list the areas as 2 vertebrae with their disk in between as that is where the most problems lie.

So the first vertebra is C1 and it's a simple circle with a hole in the middle and no disk below it. It gives you the rotation of your head. C2 is a regular vertebra with a bone sticking up on top that C1 sits on. So at C2, nerves peel off the sides of the spinal cord and go out to the body. They serve the back/sides/top of the scalp and wraps around the neck. It MAY have a branch that serves the lower sides of the face and overlaps with the facial nerves that come directly from the brain. There is a disk between C2 and C3. At C3, another pair of nerves peels off and goes out to the body and serves the back of the neck and wraps around to the collar bone area. C4 has nerves that go to the shoulder area. C5 serves the upper part of the outer arm. C6 serves the lower arm on the outside down to the thumb and index finger. C7 shows up on the skin only at the middle finger. And C8...the nerve that comes out between C7 and T1 serves the ring and little fingers.

So as you look at the spine from the back, if cut in half, you'd see all these vertebrae. At the front is the disk and behind it is the open canal for the spinal cord. The canal holds the cord and the cord is covered with a lining that holds spinal fluid in around it. They call this lining, the thecal sac. And at each vertebra, a pair of nerves peels off the cord and goes out from the thecal sac and then out through holes on either side of the bone called the neural foramina. Most of our pain comes from bone spurs or bits of herniated disks that hit these exiting nerves. When something hits the cord, it really doesn't hurt as like the brain, the spinal cord itself has no nerve endings but it can cause problems below, in your legs. Yes, you can have numb toes from a problem in your neck...the pressure on the cord transfers inward to affect the inner most nerves that serve the lower part of the body.

If you look a the spine from the side, it has multiple curves. At the neck, the spine curves inward toward the throat, known as lordosis, the curves outward at the chest, called kyphosis, then back in again at the waist, called lordosis again and then it actually curves back out at the sacral area for the final kyphotic curve. As we age, we naturally start to lose the normal lordotic curves in both the neck and the lumbar regions. Injury, arthritis and congenital problems can all make it happen faster. When the curve in your neck goes the opposite way(kyphosis), you end up not being able to lift your head.

So that is basic anatomy. Terminology.....spondylosis is a fancy word for arthritis of the spine. Osteophytes are bone spurs caused by arthritis. Stenosis is a fancy word for "closing up" whether it be the spinal canal or a heart valve. Physiatrist...a doctor who specializes in physical rehabilitation.

So here is what your docs have found: C1 and 2...fine. C2 is slightly(3mms) forward where it sits on C3. Inside of C3-4, there is severe impingement of the nerves that leave the cord to the body.....according to spine clinic but not reported elsewhere. As noted above, this would cause pain at the back of your neck and wrap around to the collarbones. Probably what is causing the muscle spasms in your neck and the vast majority of your problems. have that congenital fusion which means you may have been born with this or it happened on it's own during your lifetime. At C6-7 the same thing is are fusing naturally. Natural fusions happen when bone spurs from arthritis build up and form solid bone connecting across the bones surfaces.

You have a narrowed spinal canal with these natural/congenital fusions as it builds bone and not always where we want it to. It shows that bone spurs and some disk material have pushed up against the thecal sac and as a result, filled up the spinal canal. HOWEVER, and this is a big one, you can have your spinal cord compressed down to half thickness before it causes problems or needs to be fixed. You only have stuff touching the sac and possibly the cord was flat as a pancake(instead of oval) and compressed to the point where you couldn't see any spinal fluid around it. A normal spinal cord in women is 10-12mms and I was crushed down to 5-6mms. So you have a way to go before it needs fixing. I suspect the doc made a big deal about it as it was something he could show off and so he did. You should see my MRI.

He also made a big thing about the loss of lordotic curve and that is something that happens naturally but in your case, was sped up by that natural fusion. And since they are already fused naturally, it can't be fixed. But the good news is, it won't get any worse and shouldn't really cause that much pain unless you spend a lot of time looking up at the sky.

So the bottom line is that your neck is not that bad with the exception of the closed up foramina at C3-4 that is pressing on the nerves to your neck muscles. This produces severe spasms and the more you try not to move your neck to avoid the spasms, the worse they actually get. After a while, the muscles freeze in place.....what I suspect has happened to you.

Which of your symptoms does this explain? The headaches which can trigger migraines. Loss of neck mobility and spasms. And that is about it.

Surgery to fuse C3-4 and remove the disk and bone spurs would probably help a lot but then you are looking at man-made and congenital fusions from C3 to C7 and you'd lose a lot of head movement but you've lost that from the spasms anyhow. But I would see the physiatrist first. I see one and she is great. Has me doing all sorts of physical therapy to keep my muscles loose so I don't spasm like you do. And I take the same muscle relaxer that the doc suggested...Soma.....quite strong. I doubt they'll do surgery until you get the muscles moving. Home traction units can be very helpful to relieve the pressure on your nerves as well and should give pain relief as well.

As for all the other symptoms, I suspect your GP needs to keep looking. Have they done a brain MRI or MRA?

One of the secrets I use for pain relief is therapy....not physical therapy but the emotional type. Chronic pain can drive you to suicide. I don't know of anyone who doesn't battle depression and anxiety from chronic pain. Psychotherapists who specialize in treating chronic pain can teach you a lot of ways to deal with it and it has paid off tremendously for me. I cannot suggest a better thing to do for yourself.

So now that I've done my usual anatomy class and terminology class and looked at your records, I hope this doesn't upset you. Your neck is really not bad but you have a big problem in one spot that no one is addressing very well. If you could read some of the MRIs we have here!

Anyhow, I'm here for questions and I bet you have a ton of them.

hugs.......Jenny(fused C3 to T1)
Hi! I can not thank you enough for your reply!! Honestly, you don't know what it meant it tome to have someone care enough. And I LOVED the "anatomy lesson"! It's the 1st time anyone has explained the findings & the gist of the spine to me in words I can understand with mental pics to boot!! I'm very relieved to know the fusion isn't as big a deal as was made of it, but understandably a little ticked off no one (docs) even mentioned the problems at c3-4!!! Your info was so helpfull - I'm sorry it's taken me all s=day to reply (bad chest cold that generally turns into pneumonia). so I feel like double crap! LOL! But when I went to the pharmacy today I did pick up a vitamin b complex. And it was so interesting when you mentioned the b-12 cause a few years ago I was diagnosed with a b-12 deficiency & was on wekkly b-12 shots for a year when he decided to not refill it anymore - figured I was "ok" by then!! I'm already on a calcium vitamin as well. And I am in process of getting my gp to send to me to a physiatrist. It's what the nuerosurgeon recommended, but my gp's nurse read it as psyciatrist (right in front of me)! I'm willing to try anything at this point! And it makes so much sense that with my neck being in so much pain I do deliberately try very hard not to move it & that would cause the frozen spasms. When they explained my MRI I swear they made such a deal about the fusion, the narrowing of the sac & the non-curve that they teriffied me & sent me away. How many times do you this physiatrist?? I have also been searching for a psychiatrist as that's what I was told to do - but i like the idea of the other you mentioned & will look into that instaed. Because your right, the chronic pain just pulls you down, makes you focus only on it, alienates one from your loved ones because they simply can not understand!! And my panic attacks have kicked into high gear! It's litteraly debiliating to hurt so much you wish sometimes you wouldn't wake up in the morning..But I have 3 beautiful, amazing daughters that keep me plugging away! I have found the name of a new doc in a nearby city that may be able to help with the c3-4 area. I honestly wouldn't mind the loss of mobility as like you said I already suffer from that. It's been so long it's second nature to turn my body when needed. And I'll see what he has to say. But back to this physiatrist, from what you said they are pain management docs that works with your pain meds & the therapy as well, correct?? How do you know when you've found a good one?? And after researching the b-complex it explains the tingling & numbness if its not coming from my neck. How long did it take for you to be totally fused?? I've read in some places that if you don't have the impingement problem fixed it could become permanant. Would you agree with that?? And if the bones are deteriorating & cartilage is going away should I be concerned with repeat x-rays & MRIs every 6-12 months? Do you think if perhaps with the therapy & the vitamins I may regain some of my life back? It just seems everything keeps going downhill so fast & it's scary. But it is good to know that my neck is not that bad - thank you forputting me at ease in regards to that! Like I said - so many diff docs=diff varying diagnosis but w/out explanations! I know I had more questions. But my fogginess makes me forget so much!! I'll need to write them down & ask later I guess. But please know you have been wonderful - I understand like I said with mental pictures & you've been a godsend in a world where I was beginning to believe that no one cared!! Thx for letting me write back to you & for being open to my questions! I can tell you're very strong woman & I hope I can be as brave! Thanks again.I am going to add my x-ray results to my thread as it's confusing too & i just received the report today. I honestly dont know which is better the x-rays or the MRIS!
Hugs back, Heather
Me again! LOL! I meant I'm seeking a physiatrist, but also the other you mentioned instead of a psychiatrist! Thought I'd clarify sinece my words come out a little strange sometimes! Also I remembered, my gp has me on lasix 40 mg a day as my arms & hands swell - most usually my left & sometimes despite the lasix. Does that make any sense? Do you know of anyone else this happens to? I tend to get dehydrated a lot & end up in ER. But have to take the lasix still. Was considering a pottasium vit as well. What's your thoughts on that??
ThX!! =)
hi heather, tho i am STILL reading thru ALL of your posts here to fully get the whole pic, i needed to tell you something quick. if your doc actually has you on lasix, you NEED to also have to be in almost every case supplimental pottassium too. you DO become dehydrated from the constant peeing off of your water content in your body along with alot of potassium among other electrolytes as well. i would serously speak with your doc about this, SOON(it is usually a form of Rxed version of potassium and NOT the supps you buy at the store?). since you have what sounds like reoccuring dehydration here, tho you do also seem to have swelling, you are not taking in enough water to keep that very needed 'balance" where your hydration IS needed too.

i am also wondering if your swelling is that bad enough to actually really truely 'need' to be ON a diruretic? and more importantly here, do they have ANY real clue as to why that swelling is even occuring at all? is this 'only' the upper extremitys without having any swelling like in the whole leg or at least the ankles?(i am really wondering if you do not actually have some type of real vascular issues/or vascular brain going on TOO considering some of your symptoms, and the mere fact that you DO happen to have odd spinal congential crap as well which can 'up' the chances of having 'other" CNS(the brain and spinal cord ARE our CNS as a whole) related congenital crappy stuff as well. been there myself actually. have they EVER done at least a contrasted MRI on your brain? i DO have a possible theory goin here that they DO need to do a contrasted MRI for to know, or rule out at least) when was the last time your doc did any labwork on you to make certain with this ongoing dehydration and no potassium sups if your lytes are okay AND your kidneys too? do they do this when you have been in the ER? if so, do you have copies of those ongoing labs? if not, get them so YOU have your own copies of each and every kind of test or scan that has ever been done on you from any facility. these ARE a big part of YOUR overall medical records and good for comparritives as well to just have.

i WILL post here once i have gotten thru everything heather, K? just wanted you to know about the pretty standard need for potassium with diuretics. your doc should know this already, and also told you how to avoid dehydration as well, esp since it keeps on occuring. this can damage your kidneys, and generate other possible medical situations too over time. i unfortuently also have a kidney and liver disease as well as my spinal nightmares. you just DO need to know that everything else stays okay while we try and figure you out here. jenny is doing an amazing job tho for ya. i'll be back soon hon, marcia
Hi again Heather......I know Feelbad very well and I think she may be on to something.

Many of your symptoms that aren't explained by the neck, may be caused by bad medical care. Anyone on long term diuretics should be on potassium. I am.....40megs/day. If I tried to get that out of what they sell in the stores, I'd be taking 40 pills a need the type the doctors prescribe. So what symptoms does low potassium cause...weakness..especially weak muscles, numbness, tingling...a lot of what you are having. I bet no one has bothered to do a potassium level.

And guess what? Now that I know you are low on B12 as well, there is a disorder called subacute combined degeneration and it affects the spinal cord and brain and the symptoms exactly match yours except for the localized pain in your neck. It is treated with Vit B12 shots. Has your doc done a B12 level recently? I bet not.

I am very suspicious that your docs are over looking the obvious and should be treating you with Vit.B12 and potassium and I bet most of your symptoms would go away. Instead, they think it's all in your head...that is why they aren't doing anything for you...they think it's all in your head.

But I think it may be in your body and they are just not paying attention. Lasix with no potassium? Bad medical care. Stopping B12 shots and then you get neurological symptoms...even I know that is trouble and I'm not a doc or nurse or anything medical...but I do read.

Let me list the symptoms of of subacute combined degeneration from the Merck Home Medical Manual:

general feeling of weakness
tingling and pins and needles in both hands and feet that gradually worsens
limbs feel stiff and clumsy
reflexes can be diminished(as yours are) or normal or enhanced
vision may be reduced
loss of sense of vibration or where the limbs are in space
rapid emotional changes including irritability, apathy, drowsiness, suspicions, and confusion. Can advance to dementia

Here's the symptoms of low potassium:

muscle weakness
can develop abnormal heart rhythms

Put these 2 together and you have just about everything you've listed.

Your spine clinic found the problem at C3-4 and the others have just been pacifying you and blowing you off...they did it to me too's not unusual but very sad that they do this almost exclusively to women. A man with your symptoms would be treated differently.

If I were you, I go find a new GP immediately and tell them what you are on and your history and what you suspect maybe wrong....and you can take this post with you.

I had one spine doc tell me that I was fine and chalked my entire problem up to having a history of depression and PTSD....despite having a horrendous MRI. So I saw a second one and wasn't honest about my psych history and he got me into surgery as fast as he could. The first one just didn't want me as a patient but wouldn't say it so he told me nothing was wrong. I shudder to think what might have happened if I hadn't gotten angry and saw someone else. I might be paralyzed from the chin down by now.

Both low potassium and low B12 can be deadly if not fixed(but you'll get really sick before that)but still, the docs are just not doing their jobs. You deserve better.

Thanks so much for taking the ttime to help me - it is truely appreciated!! I am getting more info & answers from you & Jenny than any doc has ever offered! That says something about our healthcare system!! I
As for the Lasix, yes, unfortunately I do have to have it daily. The swelling occurs in my calves & ankles as well. It's just generally worse in my left arm & hand. Without taking it, by evening I'm so swollen that it physically hurts a great deal (my skin streching I'm assuming). It started happening out of the blue in 2006. Has come & gone over the years now, but since this neck crap it continuous.
As for the blood work, they did some back in March & none since. I've actually requested a full blood work-up as I'm worried aboutmy liver enzymes (from the EBV) & my mom says since my hair is now starting to fall out in large amounts, I need my thyroid tested as well. But it's interesting that you mentioned the kidneys. When this neck stuff came to say in late Feb. I started losing control of my bladder. And not the "oh, I've had three kids & if I sneeze I'm going to dribble". It was flat out, gushing down my legs. Sometimes even after having just gone to the bathroom. It was humiliating - I eventually had to wear adult diapers. I had come across in my research that the nerve impingement in my neck could cause my bladder control loss. But mom (a spine docs PA) & the other docs said that could not happen - they simply had to put that information out there to keep themselves safe. So I had a spark (a sling) surgery to help gain control back. But now I'm on my second bladder infection since the surgery & the docs (my gp & urologist) are having pissing fights as to who calls in what. Meanwhile here i sit, beginning to lose bladder control again.
I have been in ER many times for dehydration - which i assumed it was the lasix - but they never really said. Just pumped me full of fluids & sent me on my way. The last time I was told to eat bannannas & kiwi. But noone seems worried aabout it or ever did any lab work for it. And no, they havent figured out whats causing the swelling - just said here take this. I'll be in my docs office on Mon. (not for an appt tho) so I think I'll pretty much demand a full work-up.
As for the brain MRI - they did one w/out contrast as I went into anaphalctic shock after receiving contrasr dye for an abdomen CT scan. They told me the reading might not be as clear as they would like. But told me it was ok. But that confuses me because in 2006 I had an MRI & they found a blocked basal artery at the base of my neck & nothing was ever done about it. So it still worries me!
Thx again!
BINGO!!!!!!!, a BLOCKED basiliar artery and they have done NOTHING??? you do NEED an MRA done and if you like me cannot take contrast, you can get the MRA that totally would show just how your arteries are at this point, and/or can also obtain what is called a" 3T or 3 tesla scan" as well. this is what i had to do when my NS who did my cord surgery "suspectected" an aneurysm that i DID have in my superior cerebellar artery which branches off of that MAJOR basilar artery.

you have had jens spinal anatomy lesson, now i will give you a quickie blood flow lesson heather. we have two major arteries that run from 'around" the c 6 level and enter the outter spinal column thru tiny holes twords the ends of those vertebral bones. you do have two, a right one and a left one that go up into the brain and MEET AT that basilar artery that then both become one to THAT major artery to the brain, and THAT is where the beginning of your basilar starts, after the vertebrals meet to create it above themselves.. depending upon what IS blocking THAT artery and how badly could also explain some of your ongoing symptoms, ESP your bizzarre headaches.
i had just a superior branch right where that cerebellar kinda starts where there is a bend in an artery but FROM that basilar and i had a seriously really 'off" feeling come and go over time along with just insane heat flushes that would start at the very top of my head then 'flush' down into my c spine and gone. but i STILL had some good bloodflow too since what i had ballooned out from the artery and did not actually BLOCK an artery(also NOT a major one either), but with absolutetly NO actual headpain of any kind. never had a headache, but what YOU have is within the major artery that feeds the back of your brain on up to what is called the 'circle of willis" or "COW". this is what is kind of a 'crown' of all major arerteries that sit at the more top of the inside of the brain. if that whole artery is being blocked off, the blood simply is FORCED by having no other way to get to the cow, to bypass and add ALOT of pressure to an already highly pressureized type of major bloodflow to that cow, which truely IS in the shape of a circle. this little circle probably is the ONLY reason you have NOT actually had a major 'event' since it can reroute blood to compensate for your blocked basiliar. but depending upon exactly where within your basiliar that blockage is and if fully blocked would dictate alot, and also place ALOT of real pressure on whatever that blockage is, before reroute takes place just from very high pressure in the major arteries of the brain. this can create its own issues too like aneurysm(just letting you know this is a possible thats all) from constant "slamming of high pressure bloodflow aginst the arterial walls before it shifts out sideways FROM the blocked area and too the other side branches.

that numbness in your face along with at the very least here, your headpain could easily be being generated by what comes with THAT type of artery being blocked as well. the bigger arteries feed the smaller ones too, like to your face, OR this 'blockage also could be impacting the facial(cranial) nerves as well. there just are usually ONLY two real basic things that CAN create a true sense of 'numbness' anywhere in our bodies. and those two things are lack of good bloodflow to anywhere, AND/OR nerve damage/compression. whatever else is going on, it almost always would come down to those two very basic things that CAN create any loss of sensory/numbing to a body area. either ONE or even possibly a bit of both just 'could" very much BE the 'numbing generator(s)" in your L facial area, and would really NOT have much to do with the actual spinal aspect so much. while that CNS is all interconnected it still is two seperate areas that just 'do' what they do. one part interprets signals fed to it as in the brain, and the other carries those signals to all the high brain function areas as in thru that spinal cord(like the superhighway to the brain and back)where the interpreting gets done then it sends the signals back to the 'right place" that triggers whatever function is needed, then carried out by response. anything that is possible to either block the signal functions or the actual bloodflow within these key areas WILL generate symptoms of some form letting us know that 'something' is simply not working as it should, and that includes pain as well.

when you also factor in your congenital CSF flow issues due to the sac being too small, that TOO can create not only spinal issues but brain too since that dura also surrounds the brain and the spinal in one very long contained 'sac". there is a very regulated replenshing that also goes on within the brain with regards to our CSF as well. if the CSF is not 'flowing' right, that too can generate headpain. every like 4-6 seconds the brain generates new CSF. so if there is any impairment of that natural ebb and flow of it as it gets formed, sent down right thru the neck still thru dura then along one side of the spinal cord to that sacral area wayy down in the lowest of the 'back' area, then it comes back up the other side to the brain again, it could also create even MORE surrounding the brain type of pressure too which could also be a part of or also one reason at least, among the other possible of generating headpain. our CSF also has to pretty much remain at a very constant level of its own 'pressure too or problems will occur. the most common is headpain, which also could be from mild to severe depending.. so you just DO have two really solid "possible" triggers/generators of your headache issues too(but i AM leaning towards that basilar being blocked). your C 3-4 level just could be impairing that flow there too. i also just happen to be dealing with that very same level you are now actually into my cord as well. i really have no clue if it is heavily impairing or just a little. but i do now get head 'stabs" of pain like out of the blue i did not have before or just an aching usually only on one side of my head.

did the report or ANY actual doc ever tell you just what that 'blockage' consisted of? is this a form of congenital malformation such as an AVM or any other "type" of possible vascular malformation that just IS possible to even be born with(like i mentioned above, any congenital crap CAN also be in other places as well)? i had a vasc malf in my actual cord at the c 8 level that i did not even have a clue was there til i (thankfully) herniated my c 6 7 and was forced by symptoms to finally get a good look at my c spine with an MRI. never knew anything was "inside" my cord BUT cord, til that one very revealing MRI just showed this high signal intensity 'glob'(it was a 4x6x8mms sized lesion) of what was stated in my MRI as whats called 'AVM(arteriovenous malformation, and very high arterially fed pressure) but it was MANY months after when i FINALLY could get in to even see ANY actual NS that he ordered a very much needed angiogram done that it did not 'light up' the glob with the dye that we knew it was a venous fed lesion and thank god not the arterial fed AVM. but it still had bled at least once pre Dx, so i ended up getting it resected back in 03 up at the U of MN here which thankfully IS close by, by like the ONLY flippin NS who actually could tell me EXACTLY what these little suckers were and could do to me(the other two NSs i saw had had totally opposing opinions but did NOT really 'get" these things either. simply NOT ENOUGH actual experience) and he also had over thrity years of experience dealing with these little suckers(this NS was the head of NS at the U). if it was left in, i and it bled one more time, i would have become paralyzed from that bleed from the chest on down if we had not gotten it out. it was just taking up soo much of my cordspace that the 3mms i had left would have closed off my entire cord with the engorgement then bleed. it was 'an active bleeder' which none of the two NSs had ever "bothered" to even tell me either. but i paid a huge price which i am dealing with right now with pretty messed up spinal cord damage. but i still think i did the best possible thing for me.

if you simply cannot have the contrast then see about getting those two scans that i had that do not require contrast to simply 'see' within your brain as a whole with the 3 tesla scan(this magnet they use just goes into our bodies at three times the depth of a 'plain" MRI so it CAN see things without contrast), and also the MRA which even without contrast simply WILL show the arteries really well. my aneurysm did NOT show up on only a plain MRI i had had done only about a month before on my brain, but DID, even tho it was thankfully still pretty small, on that tesla AND the MRA since that MRA takes everything else BUT the arteries out of the picture. so they simply CAN better see the arteries as a whole MUCH much more clearly. this is an absolute NEED heather. you HAVE TO find out just what is going on with that blockage, esp since it was already Dxed years ago? that basiliar is just such a high pressure area that is in the kind of the back of your head on up area(those vertebrals up to basilar feed the hind brain, or posterior while the carotids feed the front or anterioer brain)? this seriously 'should have' been looked into MUCH more in depth when it was originally found heather and i cannot believe they simply let this go on you at all. having years go by could also unfortuently have created a much more complicated issue up there as i said above, with that slamming of right where two other major spinal arteries meet at to create that basilar one at all? luckily all of our arteries only, but not the low pressure veins have three pretty strong layers or walls within them. so even if there is/was some bulging out from what simply 'is' the norm flow up there, there ARE little 'safety backups' up there too. which includes that COW and the ability the brain has to reroute blood when a particular area gets blocked. but it can only compensate that higher pressure for so long before intervention IS a NEED to fix what is ever blocking up there too.

this is usually done all from within the actual arteries by what is called an "interventional neuroradiologist"(it truely IS amazing in what these types os specialists can even do from just within just arteries alone). they go in thru the femoral artry in the groin and run all the little microtools up thru the arteries to where your problem is located. this is how my neuro rad coiled my annie too, all from starting in that femoral artery on up to it. but how this all can even be fixed or cleared is kind of up to just what that actual 'blockage' is from itself. if you actually have that report that mentions that basilar blockage, could you post what it stated about that area and the actual 'blocking of' that artery? word for word from that report directly is the best way for us to see it since the way any interpretting rad simply states things including any specific terms used really DOES matter.

as far as the actual swelling goes heather, i really do think it could be one of two possibles here, but i am NOT in any way a doc. you just could have some level of sympathetic nervous system impact going on since our symp nerovus systems just also DO not only run thru the length of pretty much the full spinal cord in a 'chain" that goes in and out of the spinal cord at every single level. it also runs inside the neck area(the stellate ganglion OF the SNS also sits on both sides of the neck kind of up against that trachea) too that stays inside til it gets down to that c 8 level where it THEN starts that chaining downward. this just 'could' possibly be impacted in certain areas considering all you have going on. the other would have do do more with like a 'backflow pressure" within the arteries that feed the arms, or the flow not being able to simply go thru the full arterial structures in the normal ways because of your brain blockage in that major artery just 'being there' at all kinda thing? so the 'back pressure it would kind of generate COULD be forcing the water/fluid out of your blood vessels, hence that swelling you have going on. do you get what i mean? do you have ANY level of above normal higher blood pressure going on? if you just DO have significant swelling tho at the time they just 'do' your pressure attempts, it can in some cases kind of mess up the 'true' number readings since you just would have to really sqeeze down ALOT of fluid with that BP cuff to even GET to the artery to GET a proper read in the first place. but alot would depend on how your swelling just IS when they do that BP on you too. it just CAN skew the reads the cuff/sphyg(the thing that simply shows your numbers) is trying to get when there is no real place for all that fluid to go to have a nice 'clear' artery to read from. but that swelling IS tired to your vascular situation i think. the thing is,and whay i even mentioned the sympathetic nervous system here is that that IS what simply governs the dilation and constriction of all of the blood vessels too. so there just 'could' be a tie in too. and with losing your hair? that too is possible when you have symp impact which i also have ended up with too when they also damaged my sympathetic right at where it comes out of the cord to form that chain during my spinal cord globby resection among other damage. and i have lost a TON of my hair since the SNS also does govern our hair and nail growth too. so you just DO have "some' things that are possible from SNS being "impacted' in some potential way here too. do you have ANY really odd sweating at all going on? i only ask since the SNS also does govern how we sweat as well.

just some stuff that you really DO need to know up there heather. i would seriously tho, ask your current primary or if you are seeking out another, to do that quickly and get that brain rescanned using what i mentioned above that CAN still see any arteries very clearly here and not have to use contrast. but you will eventually need to have an angiogram done as well at some point too. i am not too certain, but i DO think they have a different "type" of dye they can use that you would NOT react to too. i am sure they ahve run up against this before and have alternatives. but this one blocked area up there that you have just could also be generating so many of your particular symptoms right now hon. and it NEEDS a new look at just to see what you have there now since yaers have passed since dx took place. someone DID drop the ball on you here in soo many different ways heather. did you own mother not see the need for SOME level of interventuion when she was into all your private business when you went to that uni? a blocked major artery in our brains just IS a big deal hon. hopefully they can get this unblocked, by possibly a stent or some other things they use for particular issues within arteries. then it will be interesting to see just what symptoms go and what stay. but i WOULD make this arterial blockage my main priority right now since this IS a 'life threat" issue for you right now. if that basliar was not such a major artery in on up to the whole cow of the brain it would not be as impactful, but it IS just carrying alot of pressure that is not going thru the 'exact' and normal route, but having to hit it, and with the overall pressure of those two vertebrals into that one single artery and then bypass thru the other arteries to the cow. alot of what can be done depends upon exactly where that artery is blocked and by what specifically that just CAN also be congenital in even how your particular vascular structures were initially formed in utero too. it would NOT suprise me at all given the congenital crap i ended up with which includes my liver and kidney disease which the kidney disease set off my glob(a lovely birthmark in the middle of my cord) and eventually my annie too. go figure.. but get this looked at asap hon. i am sooo glad you mentioned this to us as it seriously is so very important and critical to now have looked at and intervened upon by the people who know arteries the best. good luck hon. marcia
Marcia & jenny,
Hi! I dont know what i'd do w/out you two! i truely believe that you are saving my life!!

A quick background on my mother (so you know why a mom whos a PA isnt concerned). We dont get along at - never have - too much emotional, physical & neglectful abuse that I simply can't seem to forgive her for. she as well blames me for her"shitty life" because she got preganant w'me at 18 & "had" to marry my daddy(the greatest man in the whole world)!! They divorced when i was 11 & she can not forgive me for maintaining a relationship w/him. a good, healthy one!! my mother has health issues as well, always has had - but NO ONE is ever as bad as or worse off than her - she simply cannot tolerate anyone else being sick for fear they'll tak eaway her "spotlight". I have 4 siblings tho & shes been at every one of their sides anytime theyve been sick or hurt. she took off 2 weeks a& flew to cali for my sisters botfriens surgery. Bu twhen i was in the hospital for a week in jan (in the same town as her) she didnt even visit once. She also happens to be my gp best friend. so that swhat im battling against. i'm sure you've read what havoc she wrecked at the univ.
Anyway, no one has ever done a pott level test on me before. Noones ever seemed concerned about my swelling or my dehydration issues. And on that issue - when you mentioned unusual sweating - my head went "ding-ding". for a year & a half i've been battling SEVERE hot flashes. They tried to tell me it was clinical menopause. But this NO ordinary sweating. I was a stylist & I would litterally fo outside in the snow in winter in a tank top to cool off. It felt awesome to be outside in capris & a tank in 20 degree weather. Needless to say, i never wore a winter coat! but the sweating is humiliating - I've had people ask me if i just ran a marathon - it litterally pours off my hair & face. I no longer really go anywhere anymore as i cant do my hair or make-up with out looking like i just came out of pool. I didnt even get to go help my daughter pick out her wedding dress because by the time we reached the end of the driveway, she was already too worried about my sweating. so i stayed home. i blieve this also contributes to my dehydration. Ive gone into my docs office sweating like that & he'd just crinkle up his nose & shake his head.
As for the blocked artery - i was actually seeing a different gp then because i was working in that city. He was very anxious & worried about it & sent me to see a ns. the first was in st. louis - my step-dad took me. but because of weather & traffic (which one has no conreol over) we were 10 minutes late & they refused to see me. Told me they'd reschedule. My dad got angry & told them if i ended up harmed from not seeing the doc he was going to sue. they then escorted us out of the building. next ns was again 2hrs away. he hardly swoke any english & just wanted to do carpal tunnell surgery on me (never been dx w/this). so when i pushed the blocked artery issue he just told me to watch for signs of stroke. i didn't go back. they found me a 3rd., but by that time my mother convinced my step-dad that it wasnt something that could be fixed - that capillaries would branch off & id be ok. that if they tried to fix it it would shove a clot into my brain & kill me. So w/out anyone to take me & me being a single mom & having crappy insurance & my hours at work, it was just dropped. When i switched back to my currrent gp toold him & the nurse about the blockage - they were appalled that nothing had been done, that it coul dne fixed. But they are now brushing that off too.
I am seeing my gp on the 31th & im goign to demand a full blood work up & for the other brain tests you mentioned - as well as asking about the pott. i'm also going to set up an appt w/my previous gp as he liked to found out the whys of things & didnt just keep pushing pills on me! and then treat me like a drug addict whose crazy to boot!!! My mom told me that unfortunately in the medical community because of the meds I take i will always be labeled as crazt & a druggie.
a couple questions if thats ok?
What do you mean by "really sick" in regards to the low pot & low b-12?? Because i am getting worse & weaker every week. I acyually thought of going to er today as i have a head & chest cold & it feels like all my bones are broken & pirahna are eating my muscles!!
Obviously the blockage is top priority, but is it unsafe to wait til the 31th to talk to my gp?? And what is an MRA?? They did a brain MRI but since we couldn't use contrast dye he said it wouldn't be an acurate reading neccissarily. He was only looking for MS tho.
And is the c3-4 issue one I should tackle right away also?? i've since found another gp in Jeff that'll help me.
I'm sure im forgetting things - which reminds me - would any of this account for the mental fogginess, memory loss & confusion??
again ladies, you are truly amazing & wonderful people!! thank you so much fo rhelping me find answers
lots & lots of hugs - heather
i would take the chance of pissing off the whole docs staff since they simply are NOT at all even doing their own jobs right in not relaying any actual messeges when needed to the doc. just the mere fact that YOU feel you NEED to speak to your doc about this ASAP is enough to keep on calling UNTIL you can speak with him about at the very least, just sending you or referring you to a facility that does the MRA(any facility that simply even does MRIs tho CAN also do that MRA) and possibly the 3 T scans too(he CAN refer you right over the phone to this). when i had MY T scan, there were not alot of these types of scanners out there, but that was back in 05 too. i am sure most rad facilitys have at least one by now. but just obtaining that one MRA, even without contrast will ONLY show/highlight arteries ONLY and THIS IS what is needed most. nothing else is on that film BUT arteries of your brain when done. this would show that area soooo much better/clearer than what showed up on that plain MRI by far. i really am amazed that THAT even DID show itself upon a plain MRI back then only because of alll the other crap that simply IS the brain is always going to show too with MRI? the fact that they could even see this blockage at all is what kind of 'ups' the need to get as full and clear pics of this now too, tho that basililar IS a rather large artery and much easier to simply see than some others. you just need to know what this blockage consists of so they can figure out what to do to try and help clear it. since it IS a monday tho and things are ALWAYS a bit backed up and crazy in all clinics on mondays, i would cut him some slack today if you do not hear back, but if nothing tomorrow, then i WOULD be calling til you simply DO hear back from him. that MRA tho IS what truely is needed to have now, that 3 T would simply show the REST of your brain structures better without using a contrst agent than any type of MRI would. that IS a secondary thing tho. that MRA is tops for you to have done first no matter what.

i really don't know alot about that B12 thing tho, that is something jen will have to answersorry. i did try the B complex thing way back after my cord surgery just to see if it would help with two nasty pain syndromes i ended up with from that stupid surgery that in no way shape or form respond to ANY level of narcotic therepys or other meds we have tried. but i could not handle that smell the Bs just have after a while? hopefully they have changed or somehow encasulated the B complex by now to rid THAT part. esp since i want to try them again, but man they smell odd.

ya know, as far as your mom rushing to her daughters BOYFREINDS side with his surgery and not yours goes?? i would not be too offended or take that too personally hon. given what you have stated about the attention seeker she just IS at all, she did NOT go there out of love or even caring at all. she went there in order TO BE the amazing wonderfully knowledgable PA she just feels she is. it was a HUGE boost to her own ego and nothing more i am willing to bet, THAT IS why she even bothered at all. i mean seriously??the 'boyfreind and NOT your sisters surgery, hello? i am sure she just a swooped on in there and explained like everything under the sun to all these scared people(your sister, BF and probably his family as well? a whloe "audiance" waiting to 'hear HER") who simply 'needed her expertise and amazing experience" in this area. it was simply a 'perfect" opportunity for someone like she is to BE 'THE" one and only person everyone would of course listen to and wonder at all her 'knowledge". you already have been thru THAT crap so she really cannot "impress' you, ya know? for anyone who just so loves to be the center of attention, boy THAT was a perfect one for her. so try not to take THAT too personally heather. she sounds sooo flippin toxic tho. and also not only did she sabotage your health here and screw up everything at the 'perfect" type of place that i was going to tell you to go to, a uni teaching hosp, but she BLEW AWAY and soo completely violated your HIPPA rights. there just IS a dam good reason why HIPPA came in to be, and this type of situation IS one of the bigger reasons to even exist. god what a sick thing to do to your own child heather. i DO feel for you. thank god for your daughters tho. they DO sound like very loving and caring young women.

hopefully your current or the other doc you mentioned that you said was good will help you here in just getting that MRA rolling to see whats up with that arterial blockage. the next step after that would more than likely involve seeing the interventional neuro rad for an eval of whatever this turns out to be. just work on that scan hon. i gotta get moving here to an appt, lovely. just keep hangin in there heather, you DO have people here to try and help you with all of this. marcia
Not be a creeper or anything (my girls tease each other about being creepers!!LOL!), but i consider you a friend - i truly feel you care about people & you are helping me so much!!
You are right on about my mother! I had never thought of it that way, even though she had told me she was going to make sure the surgeons did their job right. And now she is best friends with this parents (who live in our town) & they are in complete awe of my mother! Blech!!! I know she is toxic in my life, but i've always struggled with needing her approval - even at my age! But i have figured out that i don't need that any longer & have told her i will never discuss my health with her again. I was actually told that I should file a complaint of violated hippa law at the univ., but that would be a last resort for me.
I did have my doc paged this am, because his staff is telling me he's writing these 'notes" stating that he would not treat me for my UTI - wanted me to go thru my surgeon (had Spark on 7-26) & that he refused to refill my meds. It all sounded off & I knoiw his nurse has been reprimanmded once before for over=stepping her boundaries (she's an LPN) in which she trys to treat the patient & screens his messages (& now apparantly writes notes for him). He did call back & was very upset & concerned with what was goign on. He said he would never not have treated me for a UTI as he knows my history beter than anyone! I told him his staff refused to even let me give a urine sample for culture - they told me m surgoen had to fax over an order for that!! (really??? I think they think I'm stupid!). Anyway, he's taking care of the UTI & he said he'd pull my file & get my lab work ordered & try to get me an MRA - he felt I needed them as well & was very angry that I havent been allowed to see him or talk to him since July! I do believe he may get new staff!! So hopefully, thx to you, Jenny & my still caring doc, I will finally get the right answers!!
I just can't express how much I appreciate all your time, thoughts & suggestions you & Jenny have given me! You are amazing women & I can only hope that one day when I'm in a position to do so, I can help others as you've helped me!
And thx again for the pep talk about my mother - it's a totally unhealthy relationship & I'm going to take my other families advice & seek therapy to truly be free of her hold on me. It helps to know others can see her for who she is & I'm not crazy!!
Thx again both of you!! hugs & more hugs! will post after my tests & let you know what comes out of it!!
XXOO Heather
so you actually had your docs pager # then? great idea heather, bypassing the "sick" stupid LPN who wants to be wayyy more than she is. there used to be a nurse for my sons doc like that who i had called to let her know to tell my sons doc when he ended up suffering a major brain injury?? she NEVER ever mentioned it to him. so when i called about a few days later to give an "update' on my sons condition and he called me back later that night(another nurse had taken THIS messege) he was soo angry and shocked that his own alleged' nurse had not even mentioned this to him or at LEAST written a note or something. duh?? what a sick woman,ya know? and i had to deal with the NP from hell who was my neurosurgeons NP when i had my two surgerys done on my c spine(an acdf followed by hardware placement only 9 mo later when i was finally ABLE to see him) despite the fact i KNEW without a doubt and so did my actual primary that i did not fuse at least one endplate since the symptoms were worse than when i had originally walked in there, she would NOT let me make an appt with him. she said it would be a "waste of HIS precious time. it was a call to my surgeon FROM my really wonderful primary that finally got me over HER head and in to see him for an eval,and yep, something did not fuse. god i was soo angry and sick of having to deal with that woman. she too kept acting like SHE was my NS or something. quite the lil 'gatekeeper" there.

i would make dang sure, if you can recall dates when you called or anything at all to back up just how many times that ONE sick LPN decided to be "creative' FOR HIM, and took things onto herself that 'should have' gone thru to your own actual doc for decisions about your ongoing care. they seriously NEED to get rid of someone like that. she does not "deserve' that job or THAT much power over his own patients either. she could end up actually killing someone by not relaying critical info for gods sake(if only at LPN, she simply does NOT always know what even IS or is not a possible symptom of potentially devistating situations patients are calling about. not too good as far as triaging patients, ya know?). unfortunetly you find alot of these types of stupid people at just about every clinic, and esp when you start seeing the "specialists? these(usually surgeons) are usually pretty busy and booked solid and constantly buzzing around, so they DO need to have at least an NP opr PA to 'do' alot of what would be dumped on him that they just do not have time for when doing surgeries and seeing patients in clinic too. some are wonderful, like my orthos PA, and some are sick and seem to think they hold powers they do not(kinda like a certain 'mom' i have heard about??). hopefully your doc WILL fire this woman before she does REAL harm to one of his patients(she IS a big liability to him). i would PUSH this with him when you see him. its ridiculous and sick that you had been trying to get a hold of him since freakin JULY and she never ever let him know that? yikes. it IS a pretty sick world of medicine out there at times when you seriously just have to need constant care and people like that get in our ways of just getting our needs met from our own docs.

so do you have an appt with him then? at least you DO have him thinking like we are, and that IS half the battle in getting our needs met when we just have to have certain testings done. i DO really feel that once that MRA can be done, at least then we will know what it is that is blocking up there, and more than likely also generating ALOT of your more profound symptoms too(this just WILL show your whole arterial set up and what that blockage consists of too). i would take some time here tho to look up everything that our sympathetic nervous systems simply govern, then compare what has been going on with you too with YOUR symptoms? make a list, just because this 'could be' being impacted from your way overly tightened muscles within your neck that easily could be irritating the heck out of either side of that sympathetic ganglion(they DO sit on both sides of our trachea, then go downwards), or at some point along that chain(this pops into and out of that cord so it IS kind of susceptable to be impacted outside in the actual spinal column) too given the issues you have there? it just IS possible to end up with some really sick pain syndromes among other crap when our SNS is being impacted or as in my case, damaged during my surgery on my cord(i am and have been stuck in the "fight or flight" mode since it went into that mode when it(the SNS) felt 'attacked? then stayed there since the "hit'). so it DOES need to be defined. it simply governs a TON of our body system functions at the more 'base' levels. just something more to add to your 'list' of possible involvements.

just make certain actually write down everything that you need from him when you see him. i know I forget alot at times, esp when i am at my docs. my brain just does not seem to want to work with me here at times either, so i DO make a ton of "lists' for many things.

i do hope this can all be done asap so you can finally get some levels of answers here for your pain and suffering among other things heather. make certain to ALWAYS obtain every single 'testiing results" for any all tests/scans run on you for YOUR own files you can keep at home. then you also have good 'baselines' to compare future testing with too. i have alll my ongoing crap in one big expanding folder that i also take with me to most of my ongoing appts too. its just not eay trying to remeber every stupid detail of every test or stupid surgerys i have had to have since 2001(6 surgeries and an annie coiling all since that year, and about 20 or so MRIs among other scans). its easier to just pop into my file,lol. i personally want to see the MRA scan results myself to just see what the heck has been doing this to you. this type of crap at times just can be something you were born with, or something that somehow 'formed itself' along the way too. good luck and DO most definitely keep us posted hon, marcia
Hi ladies,
Just a quick update - my docs nurse has told him I am abusing my pain meds. I don't actually have his pager #, but the hospital will page him for you. He did call me back & called in 2 meds for my UTI (that the nurse said he wouldn't treat me for) & seemed really genuinely upset. He also ordered the blood work I asked for. However - he did not refill my pain meds. I called & got a flippant response so I DEMANDED that they have him call me back personally. He did & told me that there is no reason for me to continue w/meds. He said the MRI & X-RAYS don't matter. All that matters is that they said they wouldn't help me. Even tho he knows the situation with my mother. I asked why I never was sent back to nuerology like he specified in HIS writing on my brain mri - he said no one in any department there will see me. When I asked about the physiatrist he actually said "I don't even know what the hell that is or what they do". I explained it to him & he told me it wasn't going to happen. He said there was just no way I was in that kind of pain & his nurse told him I was abusing it (she's yelled at several people I know for requesting refills - including me - because SHE doesn't feel, she DECIDED that it was uneccecary!! So he told me they had exhausted evry avenue & could no longer help me. He also refused to order the MRA - telling me to quit reading on the internet. Even when I reminded him about the mri in my chart showing the blockage. So, i'm done for. I only have 4 more months of insurance & w/out even a gp I have no hope of getting anything corrected, or helped, or fixed or anything. I even questioned him as to why he'd start me on narcotics years ago for migraines & now when they are worse & I have all this neck stuff & all the pain 24/7 he would just take me off of it. He said because i'm needing too much - at which point i really let him have it - cause I've been asking for pain management longer than I can remember & he never followed thru. I know I sound like a druggie, but seriiously? This pain w/nothing but advil??? I figured it was only a matter of time before he looked at as crazy & addicted too. Right now I have to say life sucks!! I'm gonna take a nap & try to wake up w/ out this migraaine from hell!! Thx ffor all your time!!!
just why or how in the heck does that nurse 'think' or is 'alleging" that you are actually abusing your pain meds???? with what you have and have had going on, it DOES require at least "some' form of real solid help with pain AND disability too, which in many cases, a good level of just getting that edge off could help? have you EVER had a good looksee at your own medical records from this doc? if not, i would call their office and ask for a release of information sheet to be sent out to you that you CAN request his actual "clinic notes' from your file and READ THEM thru to see just what HAS been written about you in them BY HIM. you usually do NOT have to talk to any of the nurses for this, but the medical records dept there only. just call and ask for their medical records dept and they should flip you to them, so you can hopefully avoid that freaking lying lil LPN from hell.

no one actually really knows just what IS in their own clinic notes that get made by our docs that could be false or even mistakes until you just obtain them and read thru like everything for themselves. almost everyones medical records contain at least 'some' sort of mistakes or in some cases, outright lies(i know mine contained mistakes). these are just something YOU need to see before you drop this as* and move onto another GP if at all possible and then start fresh with the new one as far as getting all of the testing done. and of course a referral to a good pain management facility who CAN really help with this. seeing what if anything has been written about you as far as meds go too would help.

what WERE you being Rxed and how often? all you have to do to 'prove yourself' to any new doc is either have your pharm run off or in alot of cases YOU can print off a copy of your very own Rx history too so you have this when you see any new doc. they also have a tracking system now as of the beginning of 2010 or was it 2011? every state was 'mandated', and at the federal level, to have in place, some type of 'tracking system' in place for tracking any and all narcotics and controlled substances too i think. i DO know this does cover all narcotics anyways. but any doc, dentist, ER or pretty much anyone who has the ability to even Rx anything only has to have a password to gain access to this tracking system so they will know who has rxed what to whom and when. it does not matter where you went(what pharm?) it all IS IN that system to just see by any new doc you would see. this IS a good thing/bad thing depending upon how much pain and meds have had to be used to try and just take an edge off severe pain. perceptions ya know. but at the very LEAST here, you need a new GP and PM too. if this doc is NOT going to provide "appropriate care' for YOUR level of pain, then you almost have to move on here just to survive. thats a pretty sick bunch of people there at that docs clinic. if your own doc can look at all you have going on and even think for one minute that you are not suffering "some' levels of solid pain, he IS crazy. between you mom and this sicko nurse, i cannot believe what levels of real damage and a totally sick way you have been treated heather. this just should NOT at all be happening to you, esp the 'mom' part. her simply even 'knowing' your primary and getting info on you is another violation of your HIPPA too here and i would explain EVERYTHING and anything that your mom has been involved in to ANY new primary you see as well. they NEED to know how screwed over you have been and tell them that i NEED a primary that i can TRUST. that WILL help you with any new docs.

the reason you need PM FROM another doc is in most cases when any primary(or any referring doc) refers any patient to PM like mine did, they always get an update after every visit, just so they know how you are doing and whats being Rxed? so this doc still could pass info off to your mom as well. or prevent you from getting 'appropriate levels of treatment for your levels of pain too. i know without a doubt that my primary DOES get copies of all my NPs at my pain clinics notes once a month(at my P clinic and most of them, you see the doc initially and for procedures only. then your ongoing care is overseen by an NP or PA after the initial visit/intake with the doc). it saves alot of time for me to explain things when i see him, so i have no problem with that. but YOU having the mom who is way too into your privacy already, you NEED protection. i would also threaten your mom with a HIPPA violation if she does NOT stay the heck out of any and all of your healthcare from here on out. she just IS like a worst nightmare in even you being able to get appropriate care not just for pain, but YOU overall right now. she seriously needs to be brought down a few pegs here after all that she has deliberately done to you and simply preventing you from even getting what would be "appropriate evals" for any needed types of surgerys you DID need, including having at least an eval with the intervential neurorad too about whats up with that blockage. when a blockage can be seen at all within any artery in someones brain(esp that major basilar) with a 'not very clear" and plain/non contrated MRI, it screams for a much better and clearer look asap with at the very LEAST that MRA. it IS pretty basic protocal. it simply HAS TO be better defined to see what can be done.

as far as what 'can' grow off a blocked artery and ONLY in 'some" cases and most often within the arteries of the heart, not so much with our brains as 'vessels' that your mom mentioned? those are not actual 'cappillaries"(the caps feed the very outter periphery of all extremitys to toes and finger tips til they reach one spot, the "bed where the actual arterial blood runs thru a 'bed' of caps to exchange high pressure arterial blood and O2(this also is like a 'transformer where high runs down to lower pressure too) so when it comes out the other side, it then becomes a vein and goes back to the heart for more O2) so much as they are called 'collateral vessels'. they actually started to see this 'phenomenon' with much stronger more stable arteries within the very very high pressure heart arteries(they have to be more resiliant just considering that heart is a continuous high pressure 'pump' non stop, 24/7) when one or even more than one has become blocked. this does not happen as often within the brains arteries like it does in the heart where the arteries for some crazy reason, are just trying soo hard to send blood to all the 'right places", and with ALOT more pressure than the brain has to carry, these little collateral vessels simply generate themselves in some way to continue to DO that job. i really have never heard of this occuring within our brains. while anything IS possible, i would think that considering how easily aneurysm can occur, that THAT would possibly be generated before any real actual brand new collaterals would form. it really just depends upon how really strong any given persons brains arteries are and more so if this was a congenital defect or generated over time too. it simply does not occur "automatically" in every persons brain that even has any blockage. it also does not automatically occur in EVERY single person who has a blocked heart artery either. it just 'sometimes' can occur under whatever the "right' circumstances simply are. i don't think even cardiologists totally understand the hows and whys of this phenomenon either. so simply finding out what this is that is blocking in a much clearer way truely NEEDS to be done in order to get YOU the best possible care.

if this is NOT going to happen now with this idiot doc, who just days ago WAS going to do this for you, you just have to try and find yet another 'good' primary to take over your care. that hopefully your mom does NOT know or can manipulate info from. i still cannot believe just how your own mom was able to manipulate ALL of these oh so much higher in experience and very knowledgable surgeons and neuros??? this just WAS and still is probably the best possible 'place' to have done all you did NEED at. you 'could' go back and threaten to throw your HIPPA rights all over the place and also let them know that they already DID violate your HIPPA once and if done again, you WILL file charges, esp against your mom. just a thought.

unfortunetly you are going to have to find another primary here hon. and i am soo sorry that your mother placed you in this posistion in the first place. i would want to 'do' something TO her if this were me. but any hopefully new doc you see NEEDS to know the WHOLE story of why you are even IN the posistion you are right now too(how your mom was able to totally manipulate and somehow dominate a 'team' of actual neuro experts??). and DO tell any new doc "that i feel like i cannot trust anyone anymore can i trust you?" that would tell you alot depending on how they answer that one question. i wish i could help you more heather. just DO whatever you have to to get away from this stupid doc and the insanity called his 'staff". you just DO deserve sooo much better care than you are getting. it may not hurt to actually call your state chapter of the AMA and ask them what dopes a pateint do when a family member has not only sabatoged their healthcare and placed your own life at risk and also violated your HIPPA too? you just DO need some level of a good advocate up in a bit higher place right now. it would not hurt to call and find out more specifically what YOUR actual 'rights' just are in this type of situation. this is what i think i would be doing if i was in your posistion. your mom DID this TO you, and sometimes their IS a price for doing things like this that she has to pay for her own actions too. just some thoughts to ponder. good luck hon. i AM here,K? marcia
thanks Marcia,It truly helps to know I'm not alone - at times it feels like it & I'm terrified!!

As to my mother & how she accomplished this - heres how it went down:
I saw my gp cvause my neck froze up yet again, but wasn't letting up. I had just just been in the hospital for a week in jan. for asthma realated breathing problems. At that time he switched a couple meds because I began having wierd heart palps & a high heart rate (that has not ever gone down) & high blood pressure for the first time in 41 years. This neck visit was in late feb. He ordered a new c-spine x-ray. His nurse actually called me & asked to come in (it was the docs day off) & showed me my x-ray & was freaking out on me about all these "wrong things" about my c-spine. My doc never actually went over them with me. The nurse said that since I was starting to have loss of motor functioning (minor then - just tingleing & numbness) that I needed to see a spine doc. Said she'd get the appt set up. My mom at this point was calling up to 5xs a day everyday to input her opinion. She told me I HAD to see her doc & she'd gogon & on about how I could see him within 6 wks., but then maybe not cause she is his PA & I can't see her so it might be 6 months. She said I would have to get off all my meds before any surgery could be done. Then she'd go about her neck & every Joe Blow that was seen in her office. It was overwhelming & she made it quite clear that she was going to run the show. So I simplky called my doc, talked to the nurse & said I wanted my own doc - not moms & not anyone in her building. So I show up for my 1st appt at MOI & as I'm signing in the receptionist said "so you'e Prudences daughter?" I got very scared & grabbed a card off the counter & low & behold - theres her name on the business card. I get into a room & am seeing the NP. My daughter drove me that day & he walked in & the first thing out of his mouth whike flippoing thru my papers is "I don't see a reason to call your mom in here yet". I was floored. How the hell did they know who I was?? So I called my gps office & told the nurse & she promply called the MOI & filed a complaint & said my mother was to have nothing to do with my case. And it only went downhill from there. The actual surgeons were upset with me for not seeing my moms doc & felt they were "stepping on" her toes & her docs toes. the 1st surgeon made a HUGE deal about my relationship w/my mom before he even talked about anything medical. He listed all the problem areas & what was wrong, but determined I was NOT a surgical candidate. A week later the NP had me come back because I was still in excruciating pain. I cried non-stop. So he said he felt I had ligitimate concerns & wanted me to see a different surgeon. So he referred me to one. Little did I know until the day before when I google mapped him, that he was in the same building. I go anyway - find out he's the "big boss" - chief or something or other. He walks into the exam room w/3 people he did not introduce, walked over to the far side of the room, crossed his arms over his chest & roughly asked me "What do you want me to do?" - exact words. So of course by the time he's done with me I'm balwing & he's telling me he would never go against another doc & it was all in my head and so on. While I was leaving the woman in the office (not front desk) pulled me in the room & asked what happened - so I told her. Unbeknownst to me, while she's out of the room she was getting an administrator. They both came in & I was asked to repeat what happened again. The lady said she was shocked, but she was the one who got the call from my docs office & assured me that they were monitoring my mom to make sure she didn;t access my file. I told her I hadn't meant to file a complaint & didn't wanrt to get my mom in trouble cause it would only mean hell for me. Mom called that night screaming at me cause she was called into the surgeons office & reamed for my actions. she said she was asked then if she disagreed with their reports. She told them no, that I was always "going over the edge", "overly dramatic" & actually apologized on my behalf. The NP was really wanting to help me, but since then it's flagged in my info NOT to allow me an appt with any dept at the univ. Mom says it's my fault - I should have gone along with her & seen her doc (I don't want to get into the past, it's too much, but I was told by someone who had dealt with us both (family therapy) that they feared for my safety w/her & they actually kkicked her out of the group!!). So needless to say, I was NOT letting her anywhere near my spinal cord!! Overreacting?? Maybe, but she's hurt me physically all my life - until I finally started fighting back. so maybe not. i simply cannot get out from under her thumb. she knowsEVERYONE. I'm not kidding!!!This is a small town of 13,000. I was trying to see about going to Jeff or Columbia (about 30,000) but she names off all those docs too - it's just such a close-knit medical community. I've hit road block after road block.
The other nurse called me yesterday to give me my PM appt. Not w/ a physiatrist as I had asked & the nuerosurgon requested. She made sure that I understood that they wouold NOT treat me with meds. I didn't even say anything. She just teated me as a drug addict & like they were going to make d*mn sure I knew it.
So I'm afraid that any doc is going to want my files from both my gp & the univ. I'm still plugging away trying, but I'm scared what's in those files is going to keep me from finding anyone. I will request a copy of my file (although they,ve said 3 folders are in storage & they didn't even want to give me the MRI & X-RAY reports. I almost did it yesterday. But my oldest is home so I'm going to have her take me up there & demand them (she's my staunchest defender!! I'm very lucky when it comes to my girls!)
I did some figuring last night - 10 years ago - in 2000 - he started me on Vicodin. At first for my chronic pnuemonia (I was ripping rib cartilage). When he found out it helped my migraines (took that edge off of them so I could somewhat function) he continued me on that med. Several years later (2005) he put me on percocet 5/325. He writes it for 1 every 6 hours. But now that I'm in more pain from my neck & the migraines are constant it takes 2. I've never gotten a high off them, or felt loopy. The migaine med he had me on for the less painful ones (Midrin) actually made me loopy & sleepy & I didn't like it. But we've tried EVERY non-narcotic migraine pain med & none worked, some caused bad reactions. They no longer make midrin, so it's been the percocet. In June when it was obvious my pain was still so great he prescribed a higher quantity a month because he understood that it wasn't just for migraines now, but for the muscle pain as well. But since I couodn't get in to see him (they actually gave me an appt & when I called two days before to second check the time - they said it was for that day at 8:30. His office doesn't even open til 9am & sometimes he doesnt finish rounds til 10am) so here its going to be the 31st before my appt. But he was angry because I wasn't seeing him to get my refills & he said Ive asked twice now for refills too soon. My question was why when I did see him he's give me 2-3 written scripts & they were always able to be refilled before the month was over. I explained to him that when it was just migraines I almost never went thru a fiull script in a month, but reminded him that it's not just the migraines now. But he said since the univ. wouldn't help me there was obviously no need to continue on the meds. Even tho my mother interfered. He was angry when it happened, but I know my mother & my step-dad have talked to him recently.
Hi! Hope you're having a good day! I admire your strength in having to deal with the "wacko" medical community & finding your way to real care & help & now helping others!
I went by the gps office & filled out the release form for my records - asked for only the current file as the others are somewhere in storage & theyve decided to charge me 50 cents a paper!! I told her it was highway robbery & asked if I could just bring in a package of paper from wal-mart! My daughter laughed when I asked that - made me smile! I think I'll remind my doc about the one time his previous office manager (with whom he was having an affair) illegally faxed over my ENTIRE file to another doc -w/out my permission & let him know I didn't file charges then so I think that merits a copy of my file!! If they wanna play dirty - I'm in. After all I learned from the best! LOL!
I've been talking to a Laser Spine place that does a less envasive treatment for my impingement - they're looking over everything to see if they can help me.
Because don't get me wrong, I want treatment, help, relief. But if I can put off any surgical fusions for a few more years I'll try the laser deal. But it's only a thought, an idea at this point. Stil trying to find another gp - I WILL prevail! It's getting harder to do things since i don't have any pain relief. But what doesn't kill ya makes you stronger, right?? I'll talk to you soon - hoping to get my labwork report today - but wait, it's after 12 so it'll be Monday & I'm sure it'll take me going in there & throwing a fit to find out whats going on! I keep telling myself "no more pity pot", but then I get angry which isn't good either. I try to think of the positive & the things I can do. but then I try to do it & my body says aarrrrr....NOT! It's a vicious cycle! How do you stay sane?? have you ever tried anything like mediataion, yoga, accupuncture - anything like that??
My kids & I had a "falling out" w/our church (it was 1 family dominated) & while I still really like the pastor, his daughter & wife are mean un-christian women!So I'm trying to find a new one we could attend. I think it wouod be good for us because I know it afects the girls so much too & they're having a hard time coping as well.
Anyway, talk to you soon. Hope your day is going ok. I think we all worry about eachother!! Just know I'm here for you too - if you need to vent or talk (like ur mess with the "crazies" LOL!) I just feel bad monopolizing all the time!! But have a good day!
Hugs, HJeather
hi heather,and yes i AM dealing with some seriously screwed up crap in what is simply 'so wrong" in my c spine down to the cord level and NEEDING surgery but even one of the tops around here in NS will not touch my messed up c spine rightn now with a ten foot pole. things just have been so screwed up from the inital hardware placement in like 02? i have screws migrating UP and INTO my floor/endplate of C 5 FROM where they are "supposed to be" anchored in C 6 and also C 7.they had to remove the backs of c 6 7 and T 1 just to even GET to the area where my cavernous hemangioma was before it bled agin. so there is really nothing to even 'hold' my screws in place inside the verts anymore(they had to pretty much 'clear' everything inside my verts to see the cord, which IS all the flippin bone).

sorry i have not been able to anser sooner. we had a new garage built(hubbys mancave) and of course today he is having all kinds of people over, so i have been 'trying' to actually just get my dang house 'clean enough' for any real company for the past week. so do not take things personally that i have not yet been back hon. i AM reading everything, it just takes me way too long to respond and i simply do not have that luxery of time right now. but hopefully by mon, i will get back to you heather,K? its one thing having my family over and sooo totally different when 'others' pop in, ya know what i mean? my housekeeping has been pretty low on my list of major prioritys since all my crap happened so there IS a TON to do here. just wanted to touch base with you hon. we have someone who will be staying in this room where i keep the PC so i have no clue as to if i will even be able to get online tomorrow morning(my only time i can usually even GET onto my PC) so monday may have to be 'it'. i just wanted you to know this so you did not think i was not answering on purpose or ignoring your posts heather,K? just wayyy overwhelming here right now,and on top of ever increasing pain and other bs. but i WILL be back soon . i DO hope you understand my predicament. marcia
ya know, it really just kills me everytime i hear that anyone actually HAS TO pay to simply have their own copies of anything contained in their medical files. it is just kind of 'owed" to us as patients at whatever facility we are seeing someone at,at least the initial copies anyways. if you should 'lose' something in your file you already had copied, THEN i could see charging someone, otherwise, pretty crappy. here in mn, i have never ever had to pay a penny for any of mine/my sons TONS of medical files or test results either. its just placing an 'extra' burden ON the patient when they DO have every right to just have this stuff at all? and most docs offices, esp the specialists DO have the ability to absorb THAT type of cost for gods sake. but honestly heather, even if you do have to pay, it IS worth just having your very own medical records from anyone who has seen you, and more importantly, ANY actual testing/scan reports. but with any like MRI or MRA or anything that is even done in another facility, you can usually obtain 'their' record of your scan and not always have to pay them for it. just something i always do when i fill out my paper work 'pre scan"? there is a document(just a basic release of info form, then you also write your adress on it too so they know where to send it) you can ask for in most radiology facilitys where you fill this out, then about two weeks post scan, they will release it and send it directly to you at your home address too. my 'regular' facility always does this for me. it takes the two weeks or so cuz they do not want to send out ANY report to any patient BEFORE their doc has spoken to the patient about any results contained in the reports. some people just find out particular scarey stuff upon MRI that they do not want to risk the patient reading from a report vs hearing it from their own doc? the "timeframe for hearing results from the docs are pretty much 'assumed' by them. when in many cases, you cannot even get IN to see your doc or the doc, who DOES have that responsibility to TELL you what did or did not show up over the phone at least, does not bother to do so. iot just really 'ups' that need to always obtain your own results from the facility that did the actual scan.

and you most definitely DO NEED a new primary. i seriously cannot believe that someones basic primary doc does not routinely just call their patients back when they really need to? whenever i NEED to speak to mine, i will usually just call the office, they send a messege back to him, then around 7:00 in the evening(this is when he does the refill calls or faxes to pharms and checks messeges after all patients are gone for the that day), he will call me back. or if its a monday, at least BY tuesday at the very least. this is just what any given primary 'should be doing' for their patients. specialists thoarte a totally different story. you just NEED someone who is going to advocate for you to get you to the "appropriate' places and be there when you need them too. our primarys just ARE our main medical advocates heather,and you unfortuently have the toxic mom who has managed to completely sabatoge and obliterate ALL of your ongoing medical care here. that truely makes me sick that any mom just would not want what is BEST done for their child, and not DO TO THEM what she has manged to do to you. its really sick.

for the life of me i have been trying like heck to even begin to figure out just how a basic PA could even begin to so totally manipulate and change the minds of actual neurosurgeons with only being a mere PA and NOT at all an actual much more highly experienced flippin NS or even neurologist for gods sake(these specialists simply already KNOW what risks you just have in spinal and brain and blew them off?) she must be one HECK of a major manipulator, which considering her overall personality here, would simply 'fit' with everything she has manged to do to you and others. but to take any opinion FROM a PA over what NSs just KNOW has the tendencies and major real risks to happen when any patient presents with the level of a blockage like you just have in that particular major artery is seriously sick. i would THINK someone of THAT level would simply use their own basic common sense, ya know?

but right now you just DO NEED to find anothwer primary and at that very first visit, explain her impact on YOUR medical care, her way too many HIPPA violations(along with all the interactive HIPPA violations of actual NSs and anyone else you saw whoeven MENTIONED one word to your mother as well who KNOW better) and get to someone who can simply help you with your pain management but thru THAT new doc. god only knows where your current one is sending you. paitients who ARE suffering, esp when it is very plainly visable as to the real reasons for that pain to even be there are ON FILM and just by doing the very basic neuro exam/evel on your body too which your BODY will simply react in very specific ways to the outside stimulation done IN a neuro eval that simply confirms whats on that film and what real honest to god pain it has the capability to even generate, it NEEDS, and by law, 'appropriate' treatment. you also need to let this new doc know that at some point during your actual consult with that NS, THEY were actually even PLANNING on bringing your own mother into that room where they already KNOW that by law, she cannot even BE THERE without YOUR permission too. she cannot even touch or access your file or speak to or esp ASK to any of that staff anything about you without YOUR say so. that whole thing was sooo violating of not just your HIPPA rights, but by law, family simply can NEVER consiult on or treat family either.

sooo, i would find that new primary and then see about getting that needed MRA done asap that honestly i still cannot believe they simply did NOTHING for or even tell you the risks here with that level of real blockage in the brain. that WAS up to whatever doc simply ordered that MRI to even be done in the first place. if this was only a basic primary, than that primary needed to refer you to someone who just COULD explain this IN FULL to you. you realistically should have been referred off FROM the finding or anything arterial thats not suupposed to be there, to that interventional neuroradiologist who simply KNOWS tons more about any vascular crappy stuff we just can have within the vessels, ESP when in our brains and in THAT particular artery.

whatever primary you can find that seems like an actual caring doc needs to know about EVERYTHING you have had to go thru from your so called 'mom' to the sick office staff at your current primarys and no matter what, if he or she knows your mom or not, i would REALLY tell the new doc that no matter what i need help in just protecting my privacy and someone who is going to protect MY HIPPA rights as well(tell him you also are 'thisclose' to filing violations and also calling the AMA to report since you have been soo violated, and even bigger here, no one has bothered to even 'try' and help you as everything is progressing and getting worse). then tell him the 'whys' in why you are even bringing THAT up to him. the more overall info the new doc has about the sick people who WERE supposed to be properly treating you, the better for you in the long run. and also let him know that no one has even 'bothered' to simply even DO the appropriate things for me given what i have going on inside my basilar and in my c spine. then simply ask him after all that, 'can you please just help me" and just help advocate FOR me?

hopefully you can find a good primary to take over your care heather. you have just been sooo incredibly screwed over here by people you should have been able to fully place trust in. good luck with all of this hon. just keep pushing and making noise til someone FINALLY hears you. unfortuently, sometimes we have to DO this for ourselves in the medical world just to get our very real needs met. i had to do this for my son many times and myself in certain situations too all since 1999. its just the reality of this 'world'. marcia
I'm fraking scared at this point. I seriously feel like I'm losing my mind.
Saw my gp this a.m & he was very cold & stand-offish. They made me sign a paper acknowledging that he was "firing" me as a patient. In sitting in the room I read on (should have 1st but they demanded a sig.) & saw the reasoning was that I am misusung my meds - 1st by not taking as prescribed (which I told him he had been writing them for the old dosage since July) & for calling in for a refill w/out a visit (I again explained that I'd been TRYING to get in to see him since end of June - last visit being early june). So apparantly I am unwilling to work w/their "program". I told him that I did not agree with what was on the paper & wanted to state that on there - he REFUSED! I explained all the calls I've made w/no return calls or messages - that his nurse is interceepting & screening his calls & doleing out health related yeses & nos (NOTHING an LPN shoud be doing) Even reminded him of the "note" he told me himself after paging him that he did not write. His reply??? What are we doing here today?? Because attacking my staff does not explain MY (yes, MY) behavior. He then said that he knew I had called the univ. to see the reason in my file as to not being treated there anymore & they told him that she couldn't find a reason. But then Nuero. denied an appt. He said I shouldn't want to go back there "if I feel I didn't get an un-biased opinion"!!!! HE told me that back when this all started - HE said I wasn't treated properly. But now denies it all. He most certainly was not the man that birthed my babies or came to my wedding & "partied" at my mothers house. He was an ass!! Pardon my french! He gave me 2 names of NS to try that I hadnt tried yet & booted me out the door. But I did ask my file - wasn't allowed to see it & they hadn't even STARTED copying it yet!!!
So it was a strikeout on the 2 NS - I have pages of lists of names in a notebook I've called in the last 2 weeks & its either - "we aren't seeing new patients" or "we don't except your insurance". I feel so defeated!! And heres this man - this doctor - I've entrusted my LIFE to since I was a teenager - lieing to me, covering for his staff (my dad thinks he's sleeping w/the LPN - he's married & has numerous affairs - usually w/his staff) & telling me to leave & don't come back.
My blood work had a few discrepincies - but of course he's not worried! 2 liver enzymes are elevated (couldnt tell me if it was my EBV) & my glucose was elevated & here's the funny one - my folate serum(??) says >24.0 with a reference of :
Low: <3.4
Borderline: 3.4-5.4
Normal: >5.4
So how the heck is mine >24.0???? seems off to me!!
To top it ALL off, my boyfriend says he "can't deal" anymore. I think theres someone else - for a few weeks now anyway. Like mom sais - "I"'m broken, damaged goods". Almost 8 yrs of my life down the toilet because I'm sick. And to make it even better - my girls want to go live with either their dad or - get this - MY MOTHER (whom they refer to as G-ma Hitler) because my helth overshadows so much. And I try so damn hard to not let it. So I push the pain like mom says to do - I stomp down my depression like John says to do. And I end up here today - in so much pain it hurts to breathe. And I just keep thinking - all the meds this quck has me on - 1 bottle would end it all. I think about it so much it scares me. I have lost EVERYTHING & theres nothing at the end of the line.
Even if by some miracle I find a new primary - this is Missouri - home of the good ole boys. And they'd want to see my file & they'd read his letters & I'd end up sounding like a paranoid druggie.
My mother did ALL this. She is THE & I mean THE MASTER MANIPULATOR!!! To the outside world - she's freaking June Cleaver. At home - she's physco!! She's bi=polar but won't the meds for it. She caould talk God into giving her a snowball from Hell. It unreal to watch her - like a movie. Everyone of us kids' friends & my girls friends all think "OH, she's so sweet & nice" When they've stuck around long enough - they see the real her come out & it literally scares them away. My friends would never stay at my house - she made them chore lists too & crap like that if they tried to stay. She actually managed to talk her bishop into giving her an annullment from my daddy so she could marry my step-dad in church. Her reasons? He was a drunk & He beat me & her!! I was so apalled by those accusations!! We got all our bruises & bloddy noses from HER!! And my step-dad! My daddy has NEVER laid a had on me - EVER!! She had DCF called on her too many times to count (wich I was always punished for) But she's a manipulator on that grand a scale.. It's sad - to think that she thinks she's God & all- knowing because she's a PA!
Anyway, I'm lost & scared @ alone & at the end of my rope. I need good news soon!!
Hope you are doing alright?! Sorry I went on so much - it was just too much for one day!
We'll talk soon,
sorry i have not yet gotten back toyou heather. way too much going on in my really insane life. things have finally somewhat calmed down for now anyways. but i DID want to get back to you with at least 'some" form of help here in your nightmare.

ya know, after rereading as much as i could with all your posts here and your situation just being what it is. it all truely comes down to getting YOUR needs met. unfortuently, and i just cannot believe someones own mother could sooo totally and completely mess up their actual healthcare/treatment it makes me ill just thinking about it(this whole situation is WHY HIPPA even came to be), not to mention doing MAJOR damage to YOUR reputation and getting you to 'appear" the way you now do on top of this. i DO think you have only one true and very clear option here hon, and that is to speak with someone from the AMA chapter in your state/area if for nothing else,a lil guidance here as to what to do from here. ypu just seriously DO need somehelp with your situation from outside sources since your mother seems to know like every freaking doc, nurse and medical tech in your entire state. knowing how insanely bad she has simply violated your HIPPA rights on top of speaking to 'her freinds' who happen to ALSO be in some way connected to YOUR healthcare too, she seriously DOES deserve some form of reprocussions for HER own actions, not anything you actually did, but what she is telling people? and if she actually IS bi polar or suffering from ANY mental health disorder and she is doing this to you, it really makes this a much more serious matter.

i just do really feel that contacting the AMA, which is supposed to be a more neutral party in keeping watch over all docs, surgeons and anyone with any certs that give them certain rights as a form of healthcare provider, and simply fully explain your situation and ask THEM, what the heck do i do here NOW, becasue of what your mom has done TO YOU is where you would get the best advice. i have a very sick feeling just given how and what your mom is and has done so far to you, if you do not actually put your foot down in this type of much more drastic way, she IS going to send YOU off the deep end soon. you just DO deserve "appropriate' healthcare and intervention heather that your mom seems to actually think IS even her business. the fact that when you went to that uni, that she was actually set up to come into YOUR lil exam room at some point WITHOUT your own permission is insane when it comes to very specific 'laws' on this very thing as well. i just cannot see you getting those needs met without letting her know in no uncertain terms, that her crap will simply NOT be tolerated anymore. and like i mentioned above, it just will take much mopre spepcific and drastic measures to just get done what HAS NEEDED to be done, esp in that dam artery heather.

i would ask whoever handles doc and "others' connected with thems complaints at the AMA just what YOUR specific rights are after of course explaining as briefly as possible all that your mother has done to PREVENT you from getting what needs to be done. and i most certainly would mention ALL of the many HIPPA violations that took place at that uni when you were there as well. at this point heather, you just have to choose to get all of your health needs met, or stay attatched to an insanely toxic woman,despite this person giving you life, it does not appear to me anyways that she gives a crap what actually happens to you so why should you care about her feelings of what occurs from HER own sick choices? but DO find that number for the AMA and call them to see what you can do to simply protect your self from a woman who cannot stay our of your right to HIPPA/privacy and also knows way too many docs who she manipulates for info ON you and appears to actually also be able to manipulate your non treatment of esp that brain artery blockage that should have been taken care of already. and lets not forget the one 80 your own trusted primary ahs also done to you THAT IS crazy. esp with having any staff member going way over their boundries and NOT relaying NEEDED info to any doc they are working for too? 'something/someone" has completely changed the once more 'normal tone' at his office but that i do think is because of a couple of way too involved people who also love to lie.

honestly heather, i feel sooo badly for you you have no idea. but if someone were doing to me what has been an ongoing nightmare for you, i would be just angry enough at this point to want to make the people who did this to me pay that price for their OWN actions to me. this really IS the only way i can think of hon at this point to at least find out a few things by calling the AMA and finding out how you can remain totally private to your mom so she does NOT find out(and if she finds out ANYTHING about you, they should be able to tell where THAT came from at least) when you get in to see any new doc/NS about what you just need to have looked into and potentially interveined upon as well. i am sure these people have dealt with sick family members type of crap before and can give you much clearer guidance as to how to proceed from here.

your mom has destroyed your reputation with many docs, violated your HIPPA in more ways than i can possibly even count, but much worse here is she is preventing you from even obtaining any 'appropriate' treatments for your conditions. not to mention you cannot EVEN get any real pain managed becasue of your moms impact on your own primary(who really knows how much contact she personally also has had with stupid LPN as well?) who unfortuently is also 'her friend"? and thats really sick. you have been and are simply being victimized here with regards to your healthcare in sooo many different ways it IS absolutely crazy and so appalling at how much crappy stuff one single woman can even do here, let alone to their own child.

you just DO need some back up here heather(a place/person who CAN simply help advocate for you) if you are ever going to get things first, straightened out with regards to having a doc you CAN totally trust with everything, and getting certain needed scans along with consults on that basilar blockage too. that blockage would be my very first priority right now. but DO start things moving here heather before depression completely consumes you. this type of situation WILL if it has not already done, will make you not only depressed, but it also takes away YOUR power and control OVER things(feeling totally helpless just soo sucks) that 'someone else' is holding right now. and you HAVE TO get that power back soon. your mom made her own bed here. now she may just have to pay a bit for her choices and actions as well. but DO tell your story/situation to someone who HAS to act on any HIPPA violations and complaints of anyone interveining into YOUR own treatment plans with your docs as well.

i really am sorry i cannot help you more than this heather,seriously. what is going on and has gone on with this whole situation is soo beyond sick to me. but DO start now, by making the phone call to the one place i KNOW by law HAS TO take this/you seriously. you may be able to even find that phone # for the chapter of your state in either the govt listings or state listings in your phone book towards the front? or look up "your state" then "american medical association' in a search. that may help you with at least some initial info too. but you just DO need to start taking some form of action here no matter what, and in a few different ways. you just unfortuently have something inside of your brain that seriously NEEDS much better evaluation NOW along with finding out what your treatment options actually are by a good vasc doc and or neurosurgeon or interventional neuroradiologist. i hope things can get better for you soon heather, i really do. you just DO NOT at all deserve THIS at all. good luck hon, marcia
Hi Marcia,
I haven't been on in a while as well. I am hoping you are doing well? You said it's been insanely busy - hoping it's just good ole regular everyday life! If only that could be true, huh?
I have developed a "new" symptom that's very frightening to me. Migraines are par for the course with me. But now, out of the blue, I will get a shocking, stabbing almost like thunder & lightening striking right behind my eye. It blacks out my vision & crumbles me. I'm still trying to find a new gp, a nuerosurgeon & an ortho. I have a good lead on a doc in jeff City but will have to give him a call on Monday.
I agree with you totally about my mother paying for her actions. It's just unforgivable to me at this point. Thank you for the suggestion of contacting the AMA. That is completely doable for me - much easier than calling the univ instead & not knowing if my complaint would fall on deaf ears or be dealt with. And maybe this AMA can give me some advice as to how to find a new gp or even how to approach a new doc? Thats what has me in knots the most. I'm just so afraid that my explanation will sound like to another doctor. However, at this point with the new pain I have no choice. I'm terrified & feel it needs to be dealt with soon. Kinda like "mothers intuition" - I can feel the need.
Thank you so much for all your time & help. I sincerely do not know what I would have done if I hadn't found this site & you! And trust me - you have helped me so much - more than you could ever know - & you are like an angel to me!!
I hope your doing well - please keep me updated - want to know how you're doing & want to return the goodness you've done for me - even if it's just venting or talking to me - I've realized thru this board that it's not good to hold it in & not say anything. I tried that for so long & it only made feel worse.
I will definitely keep you posted on everything - the AMA, new docs & all.And once again, thank you so much Marcia. You are truly an amazing woman & friend!!
I've been trying to reconcile how God allows good people like yourself suffer so much & totally horrible people live good lives. But as they say - everything happens for a reason.
Lots of hugs,

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