Surgery

I know this is a hard question to answer...but when do you know when it's time for surgery???

Here's a little background:  I was diagnosed with Chiari 1 Malformation last year (found by accident) but I was a-symptomatic and nothing was done.  For the past 4 months...I've been having a lot of neck pain and pain in the back of the head. A brain MRI was done and I have a 13mm herniation (correct term?). My PCP sent me to a neurosurgeon who said that my symptoms (including nausea, dizziness, lightheadedness, neck pain, back of the head pain, occasional unsteadiness, sleep apnea) are more than likely caused by the Chiari and he said that once you become symptomatic--it doesn't usually get better and recommended surgery.  Three other doctors (although not neurosurgeons) concur with him and they have all said this neurosurgeon is the best in Grand Rapids area and if he didn't believe surgery would help he wouldn't do it as he is very  conservative and not eager to do surgery.

So...how do I know if it's bad enough to have surgery? Do symptoms go away?  Or do they progressively become worse and/or will additional symptoms occur??  And if I do decide to get surgery...what's the recovery time/process?

I'm so confused and very freaked out about having surgery.  Any advice would be greatly appreciated!  Thanks in advance!

Tracy

[kgrex6440]

Hello I am so sorry that you are having symptoms. Unfortunately symptoms do not usually get better as I have never heard of someone who has gotten better w/o surgery. I for one got worse over time and I know there are several others who have. If your surgeon says surgery is the best option then it probably is. Mine said the same thing, it wasn't mandatory but it was recommended and it helped greatly with my symptoms. One thing I can suggest to you is to find a chiari specialist for another opinion. A specialist will be able to tell you if they think surgery will help in your case, as sometimes it does not and/or makes things worse. I hope this helps a little and that you can find some relief soon.

[selmaS]

Hi Tracy....ask urself...what is my quality of life right now....am I happy with it?

The amount of symptoms, overcrowding, CSF blockage and  the quality of life are all considered when looking at surgery.

Conservative methods unfortunatley do not help....and kgrex is correct as u will not get better without intervention...and even with it u may continue with some if not all the symptoms.....surgery is to lessen the progression of symptoms. Having surgery may help stop the possibility of perm damage.

U should know if u r at the point u can not deal with the issues ne more...if ur dr is against surgery and u do not feel u need it now, u can try pain management, but continue to have frequent MRI's to monitor growth/CSF flow.

"selma"

[Zipperhead0609]

When I first met with a surgeon he said to me...

"You can have surgery in a month, 3 months, 6 months, a year, or never...you won't get better though, probably just worse..."

Just ask yourself how much you can deal with.