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Chiari Malformation Community
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Avatar universal

Neurologist suggestions at Duke

Is anyone receiving treatment at Duke Medical Center? I am four years post decompression and I need a neurologist. I would prefer Duke because my brother lives in Durham,NC.
12 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

May I ask what symptoms you are having that you need a NL ?

Not sure we have anyone that I can recall going there.....
Avatar universal
Thanks Selma S for welcoming me, I posted a pic of my mri post decompression, if you could look at it
620923 tn?1452915648
COMMUNITY LEADER

Did they rule out ALL related conditions?

I am not sure what may be going on in your MRI....but  I would suggest you try to send copies to a true Chiari specialist and have testing to see what could be going on....

May I ask what symptoms have worsened?
Avatar universal
Reoccurence of symbqptoms before surgery,which never went away, they are worsening really:  blurred vision,diziness, pressure headaches, arm pain, spascity in legs, weakness in legs,weakness in right arm,tingling in face, neck pain. The neurologist that I have now is not knowledgeable of chiaro, he blaming it on migraines and I have returned to my ns he keeps saying his job has been done,and images are normal.My body is telling me different.
Avatar universal
No I have not been tested for any other conditions.What conditions should I be tested for?
620923 tn?1452915648
COMMUNITY LEADER

  There are related and non related conditions that can cause the same symptoms so surgery may have been successful and those unrelated conditions rearing their heads.....??

Have you had a MRI post op? When was it done....how far post op?

Non related conditions- MS, Lymes, Lupus.

Related conditions- Syringomyelia, POTS, ICP, CCI, sleep apnea, ,tethered cord,Ehlers-Danlos*,kinked brain stem, retroflexed odontoid......

It is also possible surgery failed....this can occur if you have unDX'd EDS* and you are rejecting a patch used to cover the dura.....do you know was your dura opened and a patch placed and what type of patch was used?

Another possibility is too much bone was chipped away and is causing cerebral ptosis....also known as brain slump.

Have you gone back to work, if so at what point post op did you go and what are your duties....doing too much too soon can cause set backs.
Avatar universal
I have syringomyelia, I have not been able to return to work.I am currently waiting on disability hearing. I have been in and out the hospital at least 6 times, numerous er and doctors visits, I can't even count due to chiari and syringomyelia issues post decompression, and not getting any answers, but we don't know why you have a reoccurence of symptoms, mri images are normal, but my body and things I am dealing with aren't normal. I just got my insurance back, so I am searching for new providers
620923 tn?1452915648
COMMUNITY LEADER

  Keep a journal of ALL symptoms and how you are doing....and ALWAYS request copies of ALL testing you have even blood labs....this will make getting answers a little easier and possibly faster when you have all the info.

You still should be tested for the other related conditions as it is possible to have several things going on at once.....
Avatar universal
Ok Do you suggest finding another ns that is a chiari specialist?
620923 tn?1452915648
COMMUNITY LEADER

  Yes, another opinion can only help...and a true Chiari specialist is a must.
Avatar universal
I contacted dr. Jeffrey greenfield office today. I am waiting on a call back. I was considering also contacting the TCI also in new york.
620923 tn?1452915648
COMMUNITY LEADER

   I e=went to TCI in NY and was very pleased with the Dr I had....would do it all over if I had to....glad I do not tho....
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