Chiari Specialists

[tdaniel770]

I have a question for everyone.  I recently seen a Chiari specialists.  I told him my symptoms, dizziness, falling, severe headaches in the back of my head and confusion.  I was able to talk to him about other things I thought the chiari was causing.  He said he looked at my MRI, which shows 5mm, and that it was impossible for that to cause my symptoms.  He also said at my age, surgery would do more harm than good. I am 42.  One of the things that concerns me is he looked at my MRI that I brought with me, tested my reflexes in my legs and was done.  Is this the normal procedure when checking out a chiari patient?  He was a neurosurgeon.  He is sending me to a neurologist for pain management for my migraines.  He said that is what I am having.

[Sexybare]

May I ask who this dr is? True chiari specialists do more in depth testing

[tdaniel770]

His name is Dr Mapstone in Oklahoma City.  He is supposed to be a chiari specialist, known all of the United States.  He mainly just looked at me from his chair with his arms crossed.  I was a little put out with him.

[selmaS]

  Hi and welcome to the Chiari forum.

Are u sure this was a chiari specialist or a NS that treats it?I do not know what all u told the Dr as to what symptoms u had in addition to what u posted above, but NS's that r not true Chiari specialists may do this type of  consultation.

Do u have copies of ur MRI? and the report? U may have chiari related issues causing some of ur symptoms....

U also need to know if u have a CSF obstruction.....

Try again, and this time be prepared as some Drs will give u the brush off...we call this the Royal Chiari run around.

[selmaS]

  Hi we were all posting at the same time.....I never heard of this Dr if he is supposed to be known all over the states.....may be some self promotion .

Again I would suggest u look at ur MRI's and  report to see what that has to say and what ur MRI's show.....

[tdaniel770]

He did really let me expand on my symptoms other than the above.  I think after looking at my MRI he had already made his mind up.  I could be wrong.  I did list my symptoms on the questionnaire I filled out.  I know what my report says, but I don't know what it means.  When I searched him out on the web, several articles referred to him as a specialist.  Is there an absolute list of specialists somewhere?  I just thought there would be more of an evaluation.

[tdaniel770]

That should have read, He "didn't" really let me expand on my symptoms.

[selmaS]

  We do have a list of Drs here, but not all Drs on it are true Chiari specialists....u have to educate ur self and research them....the list is also not  a referral. A true Chiari specialist is a NS that does research on chiari and related issues....and that is all they treat....

  I do not know of ne absolute lists.....there r top names in Chiari and I know a few of them, but in the 4  yrs I am researching I never came across the name of the Dr u mentioned...and I am sure there r many Drs  that treat Chiari I am not familiar with...but since u said this one was well known across the states I have my doubts.

[tdaniel770]

Since I am new to this community, can you tell me where to find this list?  Also, what is a normal evaluation with a true specialist involve?  

[selmaS]

  If u r using a phone to access this site u will not be able to see all the info it has to offer or the whole page, but here on the first page of the chiari forums of threads is the list, u can also access it from the Health Pages....http://www.medhelp.org/health_pages/list?cid=186

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

Well u should have a MRI of the cervical spine the brain w;/wo contrast, thoracic, and lumbar MRI,they should look for a syrinx in all areas of the spine, disk issues, tethered cord, ehlers-danlos, ICP, POTS,they should do a Beighton scale eval for EDS< and they should have u walk to see if there is a gait or balance issue, they do pin pricks....

I also had a CINE MRI, and multiple blood labs....

[tdaniel770]

Wow!!  Thank you!  I didn't realize what all they would do. I went in with a MRI of my head only, but nothing else you said was done.  Thank you!!!

[cturner41]

Did you ever find a neurologist to treat you in oklahoma? I had my surgery in Febraury 2012and loved my surgeon, but I need to find a doctor that can treat me.

[selmaS]

HI and welcome to the Chiari forum.

It is a yr since the member u addressed ur reply to, has posted. If u want to contact them u can send a PM (private message) and that will generate a e-mail so they know someone is trying to make contact.

As for a Dr to follow up post op, u can contact ur NS and ask for a referral as they know who will know how to help u and who knows Chiari and related conditions....

I found my PCP was the best choice for me, and he was willing to learn about Chiari along with me....so it worked well for me.

[tdaniel770]

I found a neurologist that I see in Lawton, Ok. She is not a "Chiari Specialist", but seems very versed in Chiari.  She has ran several test sense my surgery, to ensure she knows what is going on.