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Spinal Cord Disorders Message Board


Spinal Cord Disorders Board Index


Jenny,
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
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





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