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Looking for Ohio Chiari Specialist

Hi all!  First timer here.  I recently found out that I'm a candidate for surgery based on diminished to-and-fro CSF flow and 2 micro syrinx.  My herniation is 16 mm (I know this doesn't matter as much as symptoms).  My symptoms started Oct 2020 with stabbing left rear head pain with cough (virus), bending over and exertion.  The severe pain went away after the virus but many, mostly mild, symptoms that come and go remain.
The neurosurgeon talked about identifying other conditions (several symptoms that he didn't think were related to Chiari) but never really seemed to go anywhere with that.  
I am considering getting a second opinion.  As of right now we are waiting 6 months to have another 3 MRI's of the spine to see if the syrinxes get larger or if symptoms get worse.  I would like to know all the things that are wrong so that I can know what symptoms go with what condition as to have an idea of what has the potential of getting better with surgery.  I think it's key to making an informed decision as it is a major surgery not to be taken lightly.  He spoke of this the first visit but once he got the MRI results seemed to not care about that anymore.  Thanks for your input!
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620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

I am glad you are looking for a second opinion....keeping in mind  a NS gets paid if they do surgery....so, they will offer it....and many should not since they are not well informed or experienced with Chiari and ALL the related conditions.

Having the right Dr is key...and reveling ALL related conditions you have is also KEY!!

From what you wrote I know you have Chiari and Syringomyelia....any other conditions?

As for Drs in Ohio....we do have a list, the list however is NOT a referral or endorsement for those listed....our list was compiled by members here of Drs they have been to, treated by and liked....it is here for you to use to research the Drs to find the right Dr for you.
Many of us have to travel to get to the right Dr...even out of state.

OHIO

Dr. Lisa Lystad-Opthalmologist
Cleveland Clinic
9500 Euclid Ave
Cleveland OH 44195

Dr. John M. Tew, Jr.
Mayfield Clinic
Unv Medical Arts Bldg.
222 Piedmont Ave, Suite 3100
Cincinnati, OH 45219
(513)221-1100

If you have more questions, post them here and we will try to answer as best we can....just know you are not alone.
Helpful - 1
2 Comments
My 6 month follow-up MRI of spine shows no syrinx by radiologist.  (I had 2 micro syrinx.  NS has yet to review and discuss.)  The herniation changed from a 16mm to 11mm.  I didn't have a second opinion because I wanted to have those newer MRI results to have a more info and a clearer picture of things.  I still have daily Chiari pain in the rear left head/neck that comes and goes.  It's not severe.  I used to have strange instant pains pop up all over my body but those seem to have disappeared-maybe syringomyelia related.   Less fatigue and brain fog.

I still have pain in my left neck, flesh near left collar bone, sometimes left upper chest and left shoulder/upper arm but not everyday.  Recent testing (that PCP didn't really want to do) has revealed that I have a .7mm upper left lung nodule (non smoker) and 1.1cm left thyroid nodule that is mildly suspicious.   No one seems to think these are concerning since they are small.  It's weird that I have not had any of these pains before my Chiari diagnosis.  

Also diagnosed with Carpel Tunnel Syndrome from nerve test that NS ordered.
My NS never mentioned other related conditions that have been mentioned on this site...POTS, EDS  other than wanting to know what the front neck pain was caused by.  My niece has POTS.  I'm not that flexible.

Questions:
Is it possible that Chiari and Syringomyelia get better/disappear without surgery or intervention?
Does anyone have front neck, collarbone, upper chest, shoulder/upper arms pain?
Should I have a second opinion now that it seems to be getting better?
Any words of advice?
Hi, by spine MRI, what area of the spine? Cervical, thoracic or lumbar?  Just as a FYI -- All three areas should be checked....a syrinx can form in all areas of the spine....

I also said I am not flexible, but there is a reason for that.....since the  connective tissue are so lax, our muscle's make up for it by tightening up and we do not feel flexible but during testing my ROM was beyond the normal range...making me flexible, even though I couldn't do some things considered  typical of someone that is flexible....(hope this makes sense)
'
Chiari symptoms cycle....so you can have periods of time and be symptom free, it can go, days, weeks, months....and then all of a sudden it returns.

Another thing I wanted to touch on is many of us have  thyroid issues , with Chiari can come other auto immune conditions, such as Hashimoto's thyroiditis, and it can cause nodules to form......I was getting ultra sounds every six months to keep tabs on the nodules.

Everyone with Chiari will have differing symptoms and issues....so you may not find someone on here with the same neck, collarbone pains that you experience.

Research Drs to find one that is a true Chiari specialist....unless that is ALL they treat then you do not want that Dr....they should know ALL related conditions....

I took my time learning as much as I could about Chiari and the Drs that treat it....and I am so glad I did as I know quite a few that had surgery before they did research and they had a lot of post op issues and some have had to have multiple surgeries....some is due to other conditions, while some can be traced to the Dr that did the surgery not really being a specialist for Chiari....

I would slow down and breathe....know that  stress can cause these symptoms to flare, so take things slowly and learn the best way to destress and relax.


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