My 1st Nuerosurgeon visit.

[SkitzoSuzy]

I was just curious if I should seek out the advice of different NS. I was diagnosed back in January with CM1 with 8 mm herniation. No syrinx or any other visible complications. My NL said that anything more than 5 she would like to have the surgery done. I suffer from seizures (my NL DOES think it is connected to my CM), chronic pain (headaches, neck pain &back pain), vision disturbances, fainting, & numbness. My NL has been giving me nerve blocks in my neck & head which don't reallt help, just causes more pain & my regular dr has me on Lortab for my pain (which I've been on for almost 3 years now & I'm sick of taking).

Well, today I went to see the NS & his opinion was the exact opposit of my NL. He doesn't think the surgery needs to be done right now. He said he don't like to do the surgery mainly off the basis of pain (and that is the symptom I struggle the most with) because there is only a 50% chance that the surgery would improve it & if I can just suck it up, live with the pain & continue my medication. He didn't order any tests, new MRIs or anything. Should I seek out a new dr or go off of his advice? I'm fairly new to this whole deal...

[sandy629]

  there r alot of dr's that just tell u to suck it up, and like the ladies say keep getting opions till you feel comfortable. i also was told 50/50 but its that way with alot of surgeries.  

[actressmouse]

Get a 2nd opinion.  Go with your gut...it's RARELY wrong.  Many of us are told to "just suck it up" and go on our way.  Do what you think is right for you.

[selmaS]

  Well then u may want to see a few other NS's and do a little research b4 u do...and go with ur gut.

There is a list here with names of Drs to help u with ur research but it is not meant as a referral.-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

  I know there is a NS in Nashville...and u may have to travel out of state, just remember to check with ur insurance to see what they will cover b4 u go.

   Good luck and keep us posted
      "selma"

[SkitzoSuzy]

The NS went over my images with me he said there was some overcrowding. And I faint (because I can feel it coming on before it happens) but he said those symptoms doesn't seem to be severe enough. The way he put it he wants to wait until it HAS progressed and worsened where as my NL says she'd like to stop the progression in it's tracks.

As far as him being a specialist, I don't think he is. His office did tell me that he has treated a couple of Chiari patients and performed the surgery before.

[selmaS]

  Hi...do u know if the NS was a true chiari specialist?
Some NS's do not feel surgery is necessary bcuz they feel the herniation is a aging process and will have no symptoms.

Finding the right NS can be a frustrating  time.....very much like a roller coaster....ups and downs and twists u do not expect...but that is chiari too!

Surgery may not relieve all of ur issues...and u may have them buc of the chiari ...but having surgery does not always make symptoms go away.

Benefits must out weight the risks....

Do u know if u have a CSF obstruction?...overcrowding?

And do u faint or do u have drop attacks? There is a difference, fainting u can feel coming on u...a drop attack u can not.

  Hang in there  

  "selma"