NS???

How do i find a Neurosurgen that speacializes In Chiari Malformations In my area . I just found today my neuroligist dosnt know about them at all . And the surgen seems to know what he is talking about > what kind of questions should i be asking to make sure they are good at what they do and know what they are doing . I have been falling , lost feeling in my left side ,and im weak and always so tired . The headachs are every day now . The neurosurgen is the one that diognosed me . And since my symptomes have progressed over the last seven yrs he is worried they are going toget worse and wants me to have surgery . He is not being pushy he has explained in detail what he is going to do if i decide to go through with it. Im just scared that the next time i go compltly weak and lose control of my body i will be driving my kids. Please give me any help you can .

[selmaS]

Hi and welcome to the Chiari forum.

There may not be a true chiari specialist in ur immediate area, so u may need to travel...I have added the link to a list of drs that the members here have used and liked...Please research to find a dr u r comfortable with.

We also have a thread of questions to ask the dr.....here is a copy and paste from  one of the  threads....Well.....until he gives u his dx and suggestions it can be diff to have all the questions ready u will want to ask....so,

I suggest u have someone go along to take notes...bcuz we can bcome deer in headlights and forget to write things down....

Ask how to contact the dr afterward in regards to questions u thinks of after u get home.

U wan to know how they do surgery if it is suggested....endoscopy.... bony decompression or PFD...w/ duraplasty...and what kind of patch.

Will he check u for tethered cord...Ehlers Danlos....and other related conditions.

What % of benefits does he feel this will offer.

If no surgery then what treatment options r available..... pain management.....will he monitor u...how often.....

After surgery...how often will he monitor u.....

Is everyone in the OR covered by ur insurance and do they get all the info when u sign up w/ the drs office.....how much do u need to do extra?

How long after surgery do u need to remain in the area?

I am sure someone else will give a few more ideas.....

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

Since u r falling u may be having drop attacks, and should refrain from driving......
Did u have a CINE MRI to see if u have a CSF blockage?
DId he mention overcrowding?

We r happy to have u join our little family here, so sorry for the reason u had to seek us out.
"selma"

[CorBrenSky]

I cant rember I forget alot of stuf latly . Yes i have overcowding ... He said there is now fluid movment because it is such a tight fit in my skull . the herniation is between 6 and 9 mm he meauserd it whil i was watching from one side it mesured the 9.2 and on the other it meausered 6.1 .... I looked up my surgen after i asked my question and he is the top surgen In San Diego so i am already driving 1 and half lol once a week . And thank you for the question i should ask its very helpful cause i am scared . I will be writing every quetion down so i can ask him . Thank you so much i am so glad i found this forum

[selmaS]

U r welcome and if I can help with nething else let me know : )

"selma"

[redkim]

I have Chiari and had surgery about 15 months ago, I too live in San Diego.  What Dr are you seeing?  If you don't mind me asking.

[CorBrenSky]

Well i dont live in San Diego I live in riverside county . But my NS and Neuroligist are in La Jolla at Scripts . The neuroligist is Dr. De La Vega ....he already admitted he dosnt know much about ACM but my NS is Dr. Coufal . I made a crap load of phone calls today and didnt find one neuroligisit in In La Jolla knows much about it but i need find another NS in La Jolla that knows about it . Just dont know her name yet i got the number from one of the  neuroligist i called today . Who are your docs if you dont mind me asking LOL ?

[redkim]

I have Kaiser, Dr. Won in Fontana is my DR.  I found his name from the list posted here.  I really like him, Devin on here also had her surgery done by him. I don't have an NL and I doubt my primary doctor know about Chiari.  

[CorBrenSky]

Ya i dont have Kaiser i was thinking of switching but then i might have to start all over again .So i am atleast going to stay with my insurance for now .So were in San Diego do you live ?

[CorBrenSky]

how are you doing since your surgery ? if you dont mind me asking im kinda scared it wont help

[redkim]

I am doing okay, I don't regret it.  But not everyone reacts the same so I am relucant to say weather or not anyone should get it.  The reason I had the surgery was to stop or slow the progression of getting worse.  The surgery isn't a cure for anything.  I was just hoping to slow my symptoms.  CM can cause permanent damage and can lead to SM, which is what I wanted to avoid.  There is no gurantee with the surgery, you can get worse, get better, stay the same.  It was a leap of faith.  You will get different answers to that questions, sorry I couldn't help more :)

[CorBrenSky]

Ya that is what i have come to understand from all my research and talking to the people on here . That is why i want to do it cause i get so weak that i fall and have no strenghth to get up again with out help. the head aches are so bad latly and i have three kids i take care of . And i am thinking the same thing taking the leap of faith and hoping i dont get worse i have already started losing the feeling in my left side . What is SM? no you are helping so much you really are because i dont have anyone that knows what im going through and they dont know how to answers my quetion even a little . I just glad to know i am not alone and you do live kinda close ya know . So i see you have tats and love your art it is awesome i my self love my ink LOL .

[redkim]

SM is syringromyelia (sp) which is a cyst in your spinal canal.  You will want to get an MRI of your entire spine.  CM can lead to this because it blocks the spinal fluid and can "re-route" it into your spinal cord.   I don't have that, but others on here can explain it better.

When I went and saw my NS he said I was a candidate for surgery and it was my choice to have it now, or wait.  I decided to have it now.  For some people Chiari won't get worse and for others it can get worse very quickly.  I think doing as much research as possible is the best thing, and see more then one NS, especially one that specializes in CM.  I saw two, one that did and one that didn't.  It was night and day talking with them both.


I would also check out  a s a p . org (no spaces) it's a good source of info and has a forum also.  When I first joined Medhelp there were too many members on this forum, but it's grown quite a bit and sometimes I see more activity here now then on the other site...but I think having your eggs in more then one basket is a good idea :)