2nd Opinion

[Guest guest]

Hi All........

Well I saw Dr. Gains at Vanderbuilt today........He read my 2nd set of MRI's.

He says he saw NO syrinx. Walter 's radiologist said I do have a syrinx.

Who do I believe? He said to come back in a year and we would see if my

symptoms have gotten worse. My Thumbs dont work most of the time now. He

said its probably just carple Tunnel???

DanaZ

[Guest guest]

<< Well I saw Dr. Gains at Vanderbuilt today........He read my 2nd set of

MRI's.

He says he saw NO syrinx. Walter 's radiologist said I do have a syrinx.

Who do I believe? He said to come back in a year and we would see if my

symptoms have gotten worse. My Thumbs dont work most of the time now. He

said its probably just carple Tunnel???

DanaZ >>

Dana ...I wonder if what they saw at Walter was in the center of your

cord and not wide ? It's hard to see on some MRI's to make a distinction but

there is a condition called a dialated central canal that is different than a

syrinx . All baby's are born with the central canal open and it normally

closes by about a year old ...but in about 10 % of folks studied it seems to

stay open throughout their life . It doesn't usually cause any problems .

What's troublesome with this is that you usually won't have SYMPTOMS with a

dialted central canal though ...sorting out carpal tunnel in folks with

chiari can be VERY difficult too ..and unfortunatly some doctors don't

realise that chiari alone can cause carpal tunnel like symtpoms too and do

surgery without it helping at all cause it was chiari all along !!

I don't know of Dr Gains at Vanderbuilt but I do know some members see a

different doctor there that they feel does know chiari pretty well ...I think

his name is spelled Dr Konrad . He is a neurosurgeon that Grammy see's for

example ...you could write her for more details on that .

If you know your " SM " is very narrow and in the center of the cord / you

might want to order the tape from ASAP 2001 confrence in LA on central canal

dialation to learn a bit more about this condition / it usually doesn't need

any treatment . The tape shows MRI examples of what they look for on the

MRI's to try and tell them apart .

What I do remember really clearly though is the doctors ALSO saying if you've

got SM symtpoms despite it looking like that more benign central canal

situation --then they need to take another LOOK at things to sort out where

the symptoms may be comming from too .

I don't know if that's very helpful really ...what would be BEST is if you

can get to a FULL BLOWN CHIARI specialist to help sort this out better and

give you a more informed opinion .

VERY few doctors/ neurosurgeons out there understand SM in lots of debth

....those on the ASAP medical board would all be good choices ..is it possible

you could go farther away for another opinion ?

I'd sugest Dr Bolognese in NY at North Shore hospital if they think you show

any signs of chiari on MRI ...or Dr Barth Green in Miami if you've had a

spinal cord injury that may be linked to your " SM " or you show dammage to

any vertabrae ect that could be linked .

We could help you with transportation through small private plane travel

donated ( or one commercial ticket if you need to go more than 1000 miles )

and PERHAPS with insurance out of state ( thats tricker but some on wacma do

have a pretty good grasp on appeals ect ) OR you could try to arrange to see

Dr Konrad if you can switch doctors at Vanderbuilt ( some centers won't let

you switch without the first neurosurgeon actually agreeing to switch you

over and making a referal ) .

OR you could consider applying for the NIH study of sm which is free with no

insurance needed ...even if your " rejected from the study " because they don't

feel they can help - they may provide a bit more info ..and if they think

they can help with chiari decompresion or other interventions they will fly

you to NIH / and all treatment will be free too . Like Dr Bolognese and Dr

Green the physicians at NIH are really great and knowledable about chiari and

sm .

so ...some thoughts I hope will help somehow ...

in Paradise