Newly Diagnosed - going for surgery right away????

[bearzy18]

Hello!
I was just diagnosed at the end of May, at 15mm, with my only symptom being the head pain that comes in and out throughout my day.  It doesn't alter my lifestyle, I just deal with it as I take care of my 1 & 3 yr old.  Since my diagnosis I have seen two NS I my area and they immediately recommend surgery.  Yet when I read some forums etc I hear of people suffering far more than I who are not recommended to have surgery.  What gives?

I don't want to have surgery.  I don't feel like my problem is worth the risk and recovery.  I feel decent and am living my life 99% normally.  This whole thing makes me so, so angry.  I'm down right rude to the doctors because I am so angry.  I know that there are so many worse positions to be in, and I have no right to be angry.  Which just makes me more angry, that I'm angry and ungrateful, its a downward spiral.

I rarely read anything good about the surgery, recovery, this condition.  I know that is in part the nature of the internet etc.  But I just want some hope.  Should I do the surgery?

Erin

[selmaS]

  If this Dr is not a true Chiari specialist they again are assuming bcuz of the length of the herniation....just bcuz it is long does not mean u have an obstruction....

Imagine the base of our skull where the herniation occurs like a funnel....now the herniation like a piece of shoe string licorice...passing thru the funnel the shoestring licorice will not obstruct CSF....but if it was more like a twizzler piece of licorice it may very well as it is wider...even a shorter herniation that is more like a upside down gumdrop will obstruct more CSF then the shoestring licorice and bcuz this herniation is smaller many times Drs say it is an incidental finding....

So find a true Chiari specialist one that will do more testing , check ur spine for disk issues, syrinx's and tethered cord, and ALL related conditions.

IF ur Dr does check u next for ALL related conditions and feels ur herniation is wide and u r comfortable, then u have to go with what the Dr is suggesting, otherwise go get another opinion.

[bearzy18]

I asked in my appointment yesterday about testing the CSF flow.  I was told that by just viewing my MRI, its "not even a question that the flow is insufficient."  I have had no other tests beyond the initial MRI.  It was not even of my full spine....

[czpdx]

I'm with Selma here -- finding out (via Cine MRI) whether or not you have a CSF obstruction is crucial!

[selmaS]

  Hi and welcome to the Chiari forum.

First, have u been tested for ALL related conditions? Do u have a CSF obstruction? Many times NS's that are not true Chiari specialists only look to the length of the herniation and suggest surgery....but it is not how long it is but how it is affect CSF flow and how it is affect u and ur over all health that should indicate surgery.

U may want to consult another Dr, one that is a true Chiari specialist and get more testing to rule out the related conditions.

No one here can tell u to have surgery, and I would suggest another consult and more testing b4 u consider it.