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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

Hi Dawn, My problem was first caused by a car accident in which I ended up with severe whiplash. I went first to a chiro, then a neuro, then physical therapy. Even though I was slowly getting better at first, I had a whole range of terrible symptoms where I thought I was losing it mentally. I felt out of it half the time, forgot words, felt like I was floating, had numbness on one side of my face, the symptoms were numerous. PT was the only thing that helped me and I continued to get better after going for about a year? I can't remember the length of time but I was in bad shape. I have never been to massage therapy, I believe it is not as aggressive as PT? PT was 3 times a week and my problem was deep within the muscles so I needed intense muscle massage, it didn't feel great but helped me immensely. Then, months later, I started having horrible dizzy spells out of the blue. They would almost knock me over. I also had light headedness. It didn't occur to me that I had the same problem because i was no longer in pain. This was when I went to my regular doc and he thought I had a virus. Prescribed me meds and well you know the story from there. 6 months later I was no better and recognized my symptoms on my own and went back to PT. I found out if a person doesn't get it completely treated, similar to an illness, it hangs around and can come back, that's what mine did. I was almost done with PT and got tired of going so I just decided I was done because I felt good. I wasn't done though and ended up paying for it! Anyway, I do know that if you do have a what they call a " soft tissue problem " which can be knots in muscles that are very deep, these put pressure on the blood vessels affecting the blood flow and oxygen going to the brain, which naturally can cause light headedness, numbness, tingling, pain, dizziness etc. And in order to fix this " if this is the problem " you must find out first if this is the cause. A neuro can check, and a good physical therapist can find these trigger points also, mine did. The treatment for this is aggressive and mine was painfull because my muscles were so bad, but the guy I helped before on here actually had no pain or symptoms except for the dizziness and light headedness, so he was naturally hesitant to think this could be his problem. I wish you luck and hope this helps you a bit. I know what it is like to live with all of these symptoms. I will be on here almost daily now and keep an eye on how you are doing. And I am going to read up on chiari before i can try to help you with those questions.
hey dawn,glad you found the brain borads. i am just wondering and you may have already mentioned this previously in that pm,but just EXACTLY where is your cav located in your cord,at what level and if you have that MRI, what does that rad report state about the exact location in reference to inside the cord location? it does matter as far as symptoms.

one huge symptom i had that we now know was strictly cav related that i had was this hidious prying anD pressure sensation right underNEATH my right shoulder blade. it was this constant "gnawing,prying/torqueing" sensation that just never ever went away, no matter what i took or tried since it was from just that cav even existing in my cord. it DID go away finally after the cav was removed at 90%. believe me, when your cord is being affected directly by just about anything it can create some very off the wall types of "perceptionary" pain and bizzarre sensations. if you have that exacting location of the cav(for example, mine was left lateral in my cord), where it is sitting inside your cord, it would really help me to help you better defining your symptoms.

by the way,whether you are actually aware of this or not, that doc you sent your stuff to is one of the very tops in dealing with cavs and AVMs too, the veinous fed cavs arterial counterpart. you ARE in some very great hands with him. that should be a huge relief for you,really. marcia
Hi Scout,

Yes I have some of those symptoms

Shortness of breath absolutely drives me crazy. Plus makes me panic a bit and then breathting gets worse

tongue numbness
decreased appetite
taste impairment
I think these three go together

dizziness maybe contributed to shortness of breath due to hyperventalation
as well as fast heart rate

blurry vision mostly right eye
I also experiance lots of muscle pain. Muscle spasm which really don't hurt but are very annoying they happen everywhere even in my hands very strange.

How long did it take for your symptoms to go away after you started getting your B-12?
Did all of these resolve?

Can you tell me about your Chiari? Did you have a csf study done and did it show it was good? Were your dr's telling you that it shouldn't be causing symptoms? I don't get the usual "Chiari" headaches however when I really strain to move a piece of furniture or lift something heavy, or really do physical things I do tend to get what has been described as a chiari headache. For as long as I remember I would have someone rub the back of my skull to relieve it so I suppose I have always struggled with that. But it is not an everyday issue and is something I can deal with.

Bethsheba to answer your question and I am not a Chiari expert I only know what i have been told and what I have read. A Chiari malformation is something that you are born with. Some people claim that they got a malformation from a car accident but I believe that dr's have said they probably had the chiari and after the accident it was discovered as the accident caused the symptoms to appear. i know that there are cases out there of people that have a very small chiari and as the years go by they have gotten worse although I don't know what the causes were to make them get bigger.

I don't know if I have had this all my life although I did have symptoms about 5 years ago and was sent for an mri of the brain. No chiari was mentioned but reviewing this mri years later it is there plain as day and radiologist missed it or didn't know about it. There are probably many people that have one but not a lot of docs are knowledgable about it. What is your take on this Scout? Is that what you have been told?

I am anxious to see my neuro and get some testing done to if nothing else at least rule some things out. I actually would be relieved to find something to explain why I feel like this.

Oh I forgot to mention the sinus issue....I have for the past several months been getting swollen sinuses. It is worse on the right side and that also makes breathing difficult. A nurse told me that being 47 and possible pre menapausel could contribute to this. It has been a big issue as well
hey Dawn

Your sx to me sound like perimenopause-related.....but that's when health problems seem to arise for a lot of women.Our body chemistry is upset by the fluctuation of hormones.Many women get the same the shortness of breath,glossitis,dizziness,panic-feeling....if your right sinus is swollen that could account for the blurriness in your right eye due to sinus pressure...I have experienced that too.

The muscle spasms are so strange,aren't they though?I hated them...especially when trying to fall asllep it would drive me up the wall,but I did find that certain foods made them dairy products and ketchup,mustard, weird!!!!Some other ladies on the menopause boards here had the same findings.Try to keep a log of everything you drink/eat and see if anything triggers the muscle spasms or makes them worse.

It took about 8 shots(one shot per month)to get me feeling semi-normal and get the sx under control,but it took over a year and a half for the twitching to stop.Yes the B12 alleviated most of my sx.I still get occasional muscle weakness(but only when I'm having hot flashes,but not all the strange.......)

I had an MRI in 1999 that showed No Chiari then...only the slight cerebellar atrophy(from lack of enough B12)....then I had an MRI in Dec.'06 and it showed No brain atrophy(thankful for that!),but it showed mild thickening of the sinuses and a 6mm herniation not consistent with chiari and no other characteristics of chiari.....Strange!

So I went to university to see special neurologists...they said 1 in every 4 persons has this type of cerebellar tonsillar ectopia and that some neurosurgeons are saying that chiari causes the sx when it doesn't.They said the only time decompression surgery is advisable is if you have a constant headache that never lets up.Yep that's what I was told.They said drs.need to do tests for the sx and not blame it on the CSF blockage,no constant headache,no syrinx=sx not from's still feels like a mystery to me....which drs. to believe....which drs. to trust????????All I do know is my menopause caused me to have numerous neurological sx and I'm hoping it really wasn't chiari-related,but who knows????

As far as surgery for it...some people get better,some get worse and some stay the that is not good enough for me....the odds are not in favor of sx being alleviated....they need to research chiari further that is for sure.At TCI they are doing lots of chiari researching and my friend Cindy went there and had surgery for a tethered cord then surgery recently for a neck hopefully she will not have to have decompression surgery...she is still having a lot of pain.

The other thing about surgery for chiari is that I know a couple people who had it and after a few years they have to have the surgery again,because the brain slopes down again and they are on tons of medicine for pain,anxiety and other stuff caused by the surgery.....not for me~~~no thank you~

I didn't have a CSF study as the radiologist said my herniation was not typical of chiari malformation I.......well that was just one opinion.....

Now my new GP dr. says that the studies are showing that it is normal to have a cerebellam that sits lower,because so many peiople have it and so many people don't have any sx....

I have to give your dr. a big thank you,because he said you should wait and see how you are doing in a year from now......but if you called a neuro surgeon and said you have chiari they'd be quick to say you need surgery....remember drs. aren't above anyone>they're just humanin big bucks......sad but true.

Well that's my story on chiari.......I don't want to push my opinions on anyone...but I've seen and heard enough to say I stick to what the university dr. told me.....and my sx were alleviated with B12 that is proof enough for me.

honestly bill,and i DO mean this most sincerly,if you do get that ins, please get thee to your doc and ask to have that MRI done from the brain on down to the sacral. seriously, one of the main reasons i responded to your very first post was i did very much feel that alot of your symptoms really sounded like spinal or the brain issue within that cerebellum where the alcohol actually hits when we drink? you just have so many different widely spaced symptoms that having something going on either in the brain itself or the spinal cord area could easily explain. you just need this one contrasted MRI in order to either rule certain things in or out,ya know? i really DO, as well as the other people who have posted to you over all these months most likely want, is for you to finally have some Dx of what is really going on in there.

having alot of anxiety at this point bill when you consider the length of time this has had to drag out because of your ins situation,well that is probably normal for anyone in your posistion. its finally getting any real answers here for you that will truely help with that and probably a level of depression that just comes along for the ride when anyone is in the same situation you are,ya know what i mean? i really DO hope that your possible ins omes thru for you,really. hang in there bill, marcia

dawn. considering just where your angioma is located AND combined with the bleeds you have had along the way, what you are actually feeling in your legs at this point,and alot of other symptoms as well, could VERY easily be from your cav. i had just really off the wall insane 'perceptions' of sensations that felt like they were actually happening but were not kind of thing? along with alot of pain gnawing pressure and prying underneath my right shoulder blade that nearly drove me insane 24/7 it was ALWAYS there. you also,like what i had have whats called an 'active cavernoma' or active bleeder. you do appear from what you have stated about things actually have probably had more than one real bleed in it(thus,that hemo staining in your report,still cannot believe the rad did not look for that source of the bleeds,duh?). luckily these are NOT arterial but veinous so they tend to just 'ooze' at bizzarre times with no prediction, they just decide to do it. every bleed can change things that we feel. depedning upon the very exact location of yours in that cord,that would dictate any real symptoms you may have. mine sat in whats called the spinothalmic tract which governs and carries all pain signals to and from the brain(i now, since my removal have 'deranged pain'),your ability to feel hot or cold and and a few other things. but there are like 20 some actual tracts that run like little bundles of cable thru the cord, to the brain. any tract that is or becomes affected(can also happen with just a simple bleed in some cases) would show itself in your symptoms. its just how this actually plays out.

i would take a good look at your MRI films but only at the slice pics where your cav is located? you will see it in subsequent pics as a black area within the normal looking cord tissue? you may have to actually look at alot of those slice pics to find the affected level,but you will know it when you see it? once you find those pics,just research spinal tracts til you hit upon one page that i also found that actually displays the tracts all laid out in that same slice pic pattern that the MRI shows, then compare the areas of black in your pics with what you see as a corresponding tract. this is actually how i Dxed my own tract damage, and i was dead on according to my NS when i showed him what i did. i actually have dmage to three seperate tracts. alot of what your true symptoms are is what you look for in that tract that governs it. it also lists what is governed there too. but between your MRI and the tracts pic and most importantly your ongoing or newer symptoms, will kind of give you a rough idea of just what areas of your cord are really involved here.

this is just something i did to try and understand what this cav was doing both pre op and post op too. one thing i wanted to ask about that leg? do you have "hyper reflexes' in it? if you take the end of a butter knife and tap the heavy end under that knee cap like you have already had done many times, see how "brisk' or quickened your reflexes are. if they seem much more quick, in most cases, this IS the result of your cord cav and not something else. espescially if you did NOT actually have this prior to the leg crap appearing. it could simply be the course or another bleed has taken place again. that would have to be defined with another MRI unfortuently.

just some stuff i felt you should know hon. marcia

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