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Old 12-26-2010, 10:52 PM   #1
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Exclamation Chiari Malformation diagnosed on one MRI and not on another?

iI am hoping someone will be able to help me figure this out. I am 36 years old, mom of 3 daughters and a military spouse. I have been diagnosed with Fibromyalgia at the age of 14. I have had migraines, neck pain, numbness, dizziness, constant nausea, decreasing vision/tunnel vision and the list goes on. I 'accidentally' found an old MRI result (from 2004) in some of my miltary records when were were PCS'ing that stated they found a Chiari I Malformation and recommended further treatment. No one has ever told me anything. I requested to be referred from our Base to a civilian neurologist office. They sent me to one who was a total a** and told me there was nothing he could do & proceeded to walk out of the room. I requested a new referral to a physician from the hospital I work at (I'm a secretary in the ICU) and he saw me on 12/1 and ordered MRI's of my head with and without contrast and my neck with & without contrast. When I showed him the copies of the last MRI result he said it was congenitial and they don't 'treat' a Chiari and the only thing he could do was medicate me for the migraines. I left the office feeling REALLY disappointed, let down, upset, etc. You can get the general idea. I had the MRI done and I just literally got a copy of the head & neck MRI's tonight when I requested copies from medical records. Both the head exams (with & without contrast) state they are within normal limits and the MRI says "right paramedian disc herniation at the C5-C6 level". No mention of the Chiari at all. i'm scheduled to see my neurologist on 1/3. Does this new MRI mean there is no Chiari. On a side note & I don't know if it will make a difference is the original MRI (2004) I got was done & read in a Center for Neurological Sciences office and read by a neurologist. The exams I just had done were done in a 'typical' hospital and read by a radiologist. I don't know if that will make a difference.

In the meantime, I'm positive something is really wrong with me. The dizzy spells and feeling like my head is just foggy and out of it is getting worse and worse each day. It's hard to work, function and I feel like I can't even speak normally anymore. I'm being sent home from work because the pain in my head is totally unbearable. I'm taking Ultram, lyrica and elavil. I also am seeing a pain management doctor who stated he really thinks I need to be referred to a neurosurgeon but I don't believe my neurologist is going to be willing to give me a referral. I've called & left a message trying to get an appointment sooner because things are getting progressively worse but due to the holidays still haven't heard from anyone. I feel totally helpless and don't know where to turn. I think my husband is at his wits end because he doesn't know what else to do to help me. The medicine controls my pain from the fibromyalgia but doesn't come close to touching the head & neck pain that is ALWAYS present. On top of it all I tore my patella tendon in my knee but the orthopedic doctor won't even consider surgery to fix it until my "head issues" (his words) are fixed.

I guess I just don't know where else to turn for help. I found a neurosurgeon at Washington University Hospital in St. Louis (about 20 minutes from where I live) Dr. Chicoine who has an "area of interest" in his profile of Chiari. There is an email address listed and I'm at the point where I am thinking of emailing him for help.

I am just desperate for help and just looking for any advice on what I should do. I've been looking for information all over the internet & now feel like an idiot since the latest MRI shows nothing at all.

Thanks for your help. Kelly

 
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Sunshine223 (01-17-2011)
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Old 12-27-2010, 12:28 PM   #2
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Re: Chiari Malformation diagnosed on one MRI and not on another?

Your message is very long, and I may have missed part of it, but let me give some suggestions that may help:

1) Chiari type I: although this can cause medical problems, in most people it is some that is incidentally found on MRI. It is mentioned by the radiologists because if they don't mention it, they could be liable if it is something.

2) The disc herniation: most people have some degree of disc herniation. Do most people need surgery? No, but like in #1, it needs to be mentioned by the radiologist.

3) Your various symptoms are VERY common in migraines. Dizziness is often seen. Memory problems/fogginess is also common. It is like trying to paint with a broken arm; it is doable, but if you are stressed, something has to give. My suspicion is that if your headaches are adequately treated, your other symptoms will be treated as well.

4) Why are you having headaches every day? You may be having rebound headaches from your pain medicine, i.e. ultram.

5) Migraines very often co-exist in patients with fibromyalgia.

6) What about the neck pain? This is likely a symptom of the migraine. Nearly 2/3 of migraine sufferers have neck pain at some point in their migraine.

7) The doctor you should see is a headache neurologist. I'm sure there is a good one at Washington University.

8) I would strongly urge you to NOT get surgery, or at least wait. If what I'm saying is wrong, then you get surgery eventually and all you've lost is some time, albeit with some unpleasant symptoms. On the other hand, if what I'm saying is correct, if you get surgery now you will have had unnecessary surgery, which will not help you symptoms, and in fact may make them worse.

Good luck.

 
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Old 12-27-2010, 08:19 PM   #3
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Re: Chiari Malformation diagnosed on one MRI and not on another?

I read your story ,i"ve been where you are, i know the frustration..I was diagonosed with a chairi malformation in Oct. of 2005..And i was told i had fibromalgia too for years...Until my vision got worse and nausea started happening..The malformation was never seen in my mri's i had done..And i had lots of mri"s done,and went to lots of neurologist..The last neurologist i had finally referred me to a neurosurgeon,and he is the one who looked at my mri"s and seen the chairi malformation..And i also had vertebre"s in my neck bulging too. I was 35 when i was diagnosed and ,had been having problems for years,but when i went to the neurosurgeon,it's like all the pieces of the puzzle started coming together..And i'm now 41,I"ve had a neck fusion,and then the chairi surgery,where they take pressure off your brain..And my systems of the dizziness ,nausea,headaches are gone..I do have one more surgery to do on my neck..But i'm much better now..Not everyone has to have the chair surgery,but mine was getting unbearable...Don"t give up ,and be persistent ,A neurosurgeon is someone you diffently need to see..There used to seeing things like this,and can give you better advise..I"ll keep you in my prayers..And i know you may feel frustrated right now,and like no one understands,but trust me this to shall pass..You can get better ,im living proof..Just don't give up,keep telling doctor"s till someone listens..And i'll be praying you get sent to the right doctor..Hope my info. helps in some way..Take care MIRACLEGURL

 
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Old 01-02-2011, 09:04 AM   #4
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Re: Chiari Malformation diagnosed on one MRI and not on another?

honestly? just given YOUR presenting symptoms along with the MRIs that showed varying issues, i would definitely seek out a good neurosurgeon for at least an eval of YOU and a consult too, just to see what an NS may feel? just for that level of real hands on expertise and knowledge alone is usually worth that much. depending pretty much upon the actual knowledge AND more importantly the overall experience of ANY real type of specialist just has will pretty much dictate what 'their' overall impressions simply are. neurologists just do NOT have that (esp in your case much needed) "inner deeper working knowledge" that someone who actually goes into these areas does and actually 'sees" the "inside part of patients presentations" you will have with most NSs?

with my insane spinal cord nightmare i had going on, i actually saw a end total of three seperate neurosurgeons who, the first two gave me two totally differering 'views/impressions' of what was a glob of blood vessels that i had been born with inside of my spinal cord in my c spine level just even 'ment' for me? it took a third and much much more huighly knowledgable NS who simply had delt MANY many times with what "I" happened to have inside my cord to truely tell me what i was dealing with. that totally came down to the actual hands on experience in even seeing patients with what i had type of knowledge that got ME to the best possible NS for what MY insane problem just was. this was the head of NS at the U of MN, and i thank god i was finally able to be sent there at all since i did require a very major surgery that resected this lil sucker out of my actual spinal cord before it would have its next bleed that would completely close off the rest of my remaining cord space and paralyze me too. but this WAS HIS overall experience and seeing well over hundreds of patients over his thirty plus years of just doing his job that gave ME the best possible eval/consult and defining/tracking back all my insane symptoms to mostly that cavernous hemangioma for me to get the best overall treatment/eval and then the freaky surgeryand bizarre recovery.

what any 'good' NS would do for you here is do a much more in depth type of stimulated/evoked response neuro eval(just hands on testing looking for particular reactions in your responses) and look at all of your ongoing symptoms along with the MRIs you bring in too. they do NOT put much stock into what any given rad report states but DO usually do their very own interpretation of your films. this IS ten times better than any mere rad would or could do, so that is the best read you could probably obtain actually.

i have simply had to see many a neurologist and neurosurgeon among other specialists over the mostly past ten years(six surgeries and an aneurysm), and NSs are almost always the best way to go when you just have the particular findings that you have had so far. this IS where i would go if this were me, trust me.

your overall neck pain could very easily be stemming from that herniated disc which would also be shooting out possible inflammatory signals to muscle/fascia? that little "chain reaction' creates what is the 'guarding posistion' to kick in surrounding the neck, upper back muslces which becasue of the way the 'gropups' of muscle just sit,can also overly tighten way fuirther up at more often the base of our skulls? i am dealing with this right now too.

since your PM doc stated you should see a NS, i would seek out the needed referral from that doc, or your basic primary doc. it depends more upon what your ins requires as to 'who' in most cases even CAN do your referrals. you do NOT have to obtain any referals from another 'specialist to see another specialist" in almost every case. that responsibility in most cases, usually relies more upon YOUR primary doc who just IS who is supposed to be in charge of the overall co ordination of any patients care. this is how my ins works with certain referrals.

but one other thing here that you seriously just NEED to know? mere 'scans' of any given area are just THAT, only scans and not a full on "picture" of an area, so alot of things may not even actually show up on even the best and clearest types of scans. even with contrast, which does help. but you would be amazed at what what i have seen down in esp the spinal boards here with what a persons actual MRI looked like and what the surgeons actually find/found once they got inside of a person? in some cases, very critical findings that can only BE seen upon going in, will simply NOT show on the scan films at all, no matter just what the type of actual scan has been done. it just truely is only "scanning" an area, not a kodak moment. so also keep that in mind too. i found out THAT reality from the NS who told me this very thing before my cord surgery when he phrased a sentence with "depending upon what we find when we get in there"? and i was like you HAVE my MRI? and he explained to me exactly what i just told you. but becasue you had a previous MRI before this one that showed what appeared to be something that is NOT showing on this particular scan, i would definitely bring THAT along too to any NS consult/eval you get set up. just so that NS can see what was showing? it could have been shadowing or an odd angle too that made things 'look/appear' like you did indeed have the chiari? you just never truely know for certain til it really shows itself with IDing symptoms, gets seen with actual visual during any given surgery or your neuro symptoms simply track back to very specific 'only' areas of involvement.

but DO make that NS appt after you obtain the needed referral. i seriously DO feel that knowing what i went thru and how my symptoms were and still are but different from my damge that your symptoms ARE showing whats going on, you simply DO need that all interpretted with the specific neuro evals and descriptions of your symptoms. the good thing about the hands on neuro eval is that how your own body parts respond/do not respond when certain types of testing is simply done is what will show how involved certain areas are. your responses just DO tell any good NS alot more than any scan or what you try and describe to them too. sorry for the length here. but i would get thee to a good NS here since you are not going to get anywhere with this "ologist" who sounds like he is a pretty lazy lil dude to me as well as not that knowledgable? you simply DO need definition and reason that he cannot give you. i do wish you luck with this and hope you can get to a good and experienced NS for the best possible care. please do keep us posted kelly, marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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