BASILAR INVAGINATION

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BASILAR INVAGINATION

Postby gncrzy3 » Mon Jun 25, 2007 11:31 pm

I was diagnosed With SM 5 years ago,, it runs from my c3-c4 ( LOL they argue),, to my L5 and they had no idea why. I was sent to a specialist ( well a bunch),, but one is washington d.c.. who FINALLY could tell me why.
( they had NO CLUE). He diagnosed me with basilar invagination..( atypical) but I was excited to finally get an answer. I am now scheduled for surgery on the 14th of Ausgust. Does any one else have a dual diagnosis of SM and basilar invagination? OR has any had this surgery?
They are taking the bone from one of my ribs,, and fusing it with a metal plate and screws into my neck. there is a chance ( not a guarantee),, that it could possibly help shrink my syrinx. I would like to know what to expect. thank you!!
gncrzy3
 
Posts: 70
Joined: Mon Jun 25, 2007 11:23 pm
Location: western PA

Postby mac » Sat Jun 30, 2007 11:50 pm

Hi gncrazy3, I don't have any answers for you, but wanted to bump this up for others. Usually on this board, I have read people with Chiari having the dual dx of BI. I can't remember anyone with SM and BI but no CM, but then my memory is not all that good. I only say this to let you know why you perhaps did not get any replies on this all week! I'm sorry you did not.

I hope you do really well with your surgery. BI is such a debilitating disorder and I'm glad that you have found someone who can help you and wouldn't that be so wonderful if it also caused your syrinx to shrink?! I pray that will happen for you.

I think Keesha could perhaps have more info on this than I do. I know Bryan also has a dx of BI. I looked into it a lot at one time because of my own cranial settling and the slight pressing of my odontoid on the brainstem. however, I am told that that will be relieved when I have the extraction/fusion at TCI late this year. Having the congenital condition of BI is much different!! So, I'm very pleased you have found a doctor who has found what is going on with you and you have a surgical plan. And I hope others here will see your post now that I'm bumping it back up to the top.

Pls keep us posted on how your surgery goes, okay?? I'm really interested in hearing how you do.

mac
mac
 

Postby gncrzy3 » Tue Jul 03, 2007 1:54 am

thank you both soooooo much for the responses!! Ok,, I have had my lower back fused,,, and had screws put in it,, and ,, well lets just say I NEVER want it done again,, and I am just trying to prepare myself,,, if the pain in going to be similar?? Also is there anything that you can not do after the fusion?? Did you get to go home.. or were you sent to a rehab center? I just thought about this the other day,,but I constantly have mri's to make sure that the syrinx has not gone into my brain ( then they will shunt immediately),, but can they do that with metal plates and screws? My head is spinning and I am getting scared.. but OMG... if it actually helps with my pain and decreases my symptoms,,, it will be worth it!! Any help is much appreciated!!!
gncrzy3
 
Posts: 70
Joined: Mon Jun 25, 2007 11:23 pm
Location: western PA

Postby gncrzy3 » Tue Jul 03, 2007 10:46 pm

LOL I don't know?? I was sent to a specialist in washington D.C. ...
he said that I have an Atypical basilar invagination,,, ( no chiari)...
from what he said I must have been born with it,, and the SM developed as a result. but my symptoms were so vague and seemed so unrelated It took the Years to dx me. they had me thinking I was a hypochondriac... until I was rushed to pittsburgh hospital because of severe pain and weakness to the point I could not stand. then for 5 years they told me that they knew something else had to be going on,, but had no idea what..
tried to dx me with ms, lupus,,ect,, It took the 5 years and increased pain and problems to get me to him!!!!
He said he was going to take out one of my ribs,, and fuse it into my neck with a metal plate and screws to make my skull sit properly on my spine??? sorry that is all I know
gncrzy3
 
Posts: 70
Joined: Mon Jun 25, 2007 11:23 pm
Location: western PA


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