Symptom/Treatment questions

[WarmweatherGirl]

I'm still in my quest 4 a true diagnosis of cm. I have 5-6mm herniation and unrelenting neck and right arm pain. I suspect I may also have EDS, hyper mobility type. What specific doctor should I c 4 an evaluation or diagnosis? Rheumatologist? Geneticist?

So far, I've received steroid epidural injections in my cervical region with little relief (I also have herniated discs and major arthritic bone formation). My neurologist is not my favorite person as he makes me feel like a whiner. He is happy with himself 4 diagnosing me with migraine and small fiber neuropathy.

Do any of u also suffer from SFN?

My next order of business is collecting all of my MRI's and reports to take 2 the Cleveland clinic where they have chiari specialists(i live in ohio). My ability 2 cope right now is nil and I cry at the drop of a hat from the pain and frustration. I'm only 36 and feel like my body has turned on me.

Anyone have any other suggestions or words of encouragement? It's been almost a year since I started this quest and I'm losing my mind.

[MicheleTxRN]

I'd just like to say that I've done extensive research on cine MRI's ...there are as many NS's that believe in them as an indicator for PFD as there are NS's that do NOT believe they are relevant..ALSO...two different NS's can read the same cine FLOW mri completely differently...I'm fortunate to have access to a medical database for research...however, I'm unfortunate that my case isn't clear cut either

[Deulley87]

So your about 3-4 hours from here. I have seen Dr.Ramuthulla (sp?) and Kambiz at Cleveland clinic....not nice, plus they aren't doing anything, they want to repeat test in 1 year...I feel that's way to long.

Dr.Goel with St John West Shore (west lake)....very nice, wants to answer all YOUR questions, staff is sooo kind. He said he has performed decompression's before, but is not a specialist.

Since I might need 2 surgeries, he is passing me off to his mentor Dr.Bamakidis (Cleveland), who can perform both if needed. I have not meet with him yet (Dec 31st)

Good luck with everything, keep us all updated :)

[WarmweatherGirl]

I'm in Columbus. Dr. Daniel Prevedello performs decompression surgery at Ohio State med Ctr. I have heard many good things about him. He's on the fence w me since my cine MRI was "normal" but he's a good listener and won't operate unless he's sure u cld benefit from it. My current issue is finding a good neurologist here that will really listen and not jst write me off after a few different dx's. I think they and my other sx's r all part of a bigger picture.

[Deulley87]

I'm willing to travel, but don't have the means, along with 2 children, but thank you very much :)

[Mousey2008]

Hey not sure if your willing to travel to Duke its in NC. If the NS Dr Sampson, I just started going to decides to help me out I will let you know so you can try them not sure how they are about out of state ins. He works at the Duke Cancer center. Hope you can find one.

[Deulley87]

You said you live in Ohio? May I ask which area, I am also from here. I'm about 30 mins from Cleveland, but am on that same quest to find a good doctor.

Long story short for the last 5 years I've been going back and forth with my family doctor about not feeling right and back pain. Finally in Aug of this year he ordered an MRI, which reveled CM and SM.

So that had lead to needing a NS, 3 later I'm still looking. Most of them I have seen are in NE Ohio here, but I did find one in Cincinnati( haven't explored that one yet) Also I'm finding there really aren't any specialist in my area, and the institute in NY wont take out of state insurance.

But I would be more than happy to exchange NS names, numbers and overall experiences with you. And maybe, just maybe we'll find what we need :)

[Mousey2008]

Hello I also have a 5mm herniation. I experience all symptoms that a major CM patient does. my neurologists acts like he has no honest explanation. I finally did my own research found a doctor that knows a little about cm. Told my doctor to refer me to him that I wanted another opinion. The neurosurgeon I have picked has ordered my first cine MRI. He also explained that if it shows a CSF blockage he will do the surgery for me but if it doesnt then he will not do such an invasive surgery as it could cause more problems. Meds do not work for me at all so to me without taking the chance with the surgery I will have to live with it the rest of my life. I have been told I had MS it is a misdiagnoses, Fibromyalgia (docs way of saying chronis pain not sure where it comes from its a misdiagnoses, skeletal pain misdiagnoses, migraines.... needles and pins in extremites maybe a pinched nerve none found,etc one thing that never made since was my blindspells that was how I knew to keep searching. Favorite line my old doc would say on the ringing in the ears your too young to be having that(I wanted to hit him) Find a doctor you believe listens to you. good luck n yeh head positions make symptoms worse I have to lay with two thick pillows propping me up and one of those body pillows for my back to be against it might help for you too.

[Viva001]

I never heard of CFN, but it would not surprise me one bit if it were related to Chiari.  I mean, why just a small skull?  I also had a severe cervical compression, and there is narrowing in the vertebral foramina (which is inoperable).
And of course many here have comorbid conditions.

Be careful with head positions!

[WarmweatherGirl]

SFN- small fiber neuropathy. I was dx'd by a QSART test (acetylcholine induced sweat test on arms and legs). It causes numbness, tingling and nerve pain in arms and legs, so wld be hard 2 differentiate b/t cm and SFN.

Don't have official cm dx because cine MRI was normal (but read by regular radiologist, not cm specialist). R there any cine MRI's that r done in different body positions? My issues get worse w leaning over or tilting head back.

[selmaS]

  HI ,...not sure I know what u r referring to with the SFN....

My Chiari specialist had a NL do an exam and they do the Beighton scale testing for EDS and it was done with them...so some NL's should know this, some rhuematoid drs....

The only time I am told u go to a geneticist is if they think u may have  vascular EDS....so wait to see what they think u have.

Not sure y if u have a herniation u do not have a dx?

Have u had a CINE MRI?
Have u ruled out all related conditions?

This can be a slow process, but this is one u do not want to rush, those that do can end up with issues post op...take ur time research the Drs and find the best one for u...it was a little more then a yr from dx until I found my Dr and then a few months more till I had surgery...take ur time.