Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 << 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 << 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 Quote Link to comment Share on other sites More sharing options...
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