Surgery? Is it Worth It?

[brooklynmarrie]

Hi! So I got diagnosed with a type 1 Chiari Malformation is mid-may of this year. I had an MRI saying my malformation was 18mm long, the neurosurgeon said my symptoms were not severe enough to have surgery. So I went to neurologist who gave me medicine for my headaches and thats pretty much it. Lately I am really noticing all of my symptoms like; extreme dizziness, tingling limbs, stuttering, low balance control, twitching and of course my everlasting headache. I am just wondering if anyone else would think surgery would be worth it..
Thanks!

[selmaS]

---Hi-and-welcome-to-the-Chiari-forum.

--To-answer-your-question-for-me-surgery-was-worth-it-But-not-everyone-with-Chiari-is-a-surgical-candidate.

--Size-of-the-herniation-is-not-as-important-as-if-you-have-a-CSF-obstruction-surgery-is-done-to-restore-flow-so-if-it-is-not-blocked-surgery-will-not-help.

There-are-related-conditions-that-can-cause-many-of-the-same-symptoms-so-ruling-them-out-is-very-important-too.

-Some-of-the-related-conditions-can-affect-surgical-outcome.
The-above-poster-has-covered-most-of-what-I-typically-would-say-so-just-know-you-are-not-alone.

[baccalynnwv]

Hi. The statistics I have read show that if you have a symptomatic Chiari, there is about an 85% change you will feel better and have relief, especially with the headaches. My neurosurgeon stated that my headaches should definitely improve - the other symptoms will probably improve. He said what is playing in my favor is that most of the more severe symptoms are recent - within the last couple of years. I am also not on a bunch of pain medications that I would have to detox from. He said that was a big plus.

Excuse me, but 18mm is huge. I have a 4 to 5mm herniation and am scheduled for surgery January 22. Its not about the size of the herniation, but about the blockage of CSF flow and your symptoms really. Have you had a CINE MRI?

I would suggest going to a different neurosurgeon. You really need to see one who focuses on Chiari as a main part of his practice. You also need to ask about craniocervical instability and be screened for Ehlers-Danlos syndrome. That is very important. I would look these topics up on google and do some research. Check out CSFinfo.org. there is a wealth of information there with lots of video lectures from leading doctors who specialize in the study of Chiari and related disorders.

Surgery is not a cure. If you have Chiari you are really treating the symptoms. Hopefully surgery improves symptoms greatly and people can return to the quality of life - or close to it - that they want. But it is a life long condition. It is really up to each person as to whether they feel risking surgery to possibly improve their quality of life. So important to find a doctor who doesn't just say he/she "treats" Chiari. There is a list of doctors on this site to help you find a doctor that other members have seen and felt they had a good experience with. Its not a recommendation, just a helpful tool in your search for someone who knows what the heck they are talking about. :) Most physicians and doctors do not know enough about Chiari to be worth even talking to about it.

To answer you questions specifically, most people I talked to, even the ones who are still dealing with some symptoms after surgery, say they would do it again. Most of the people I talk to that are still having symptoms, it is related to other conditions that are common with Chiari and were not treated because they didn't go to an actually specialist. They all say they wish they would have done more research and found a neurosurgeon who treated Chiari as a main focus of their study.