Questions/Concerns about Decompression Surgery

[hak7]

I'm 29 years old and have Chiari Malformation and a medium-sized syrinx (cyst) in my spine (C5-T1).  I have severe pain/discomfort in my upper back that totally consumes my life.  I've tried every non-surgical therapy you can think of to ease my back pain, but nothing has worked.  I'm convinced that the cyst/Chiari is causing my back pain; however, I saw 3 neurosurgeons who didn't think so and didn't recommend surgery.  They all recommended that we monitor the cyst via MRIs to see if it grows before considering surgery.

I live in the Atlanta area and was fortunate to get an appt with Dr. Daniel Barrow, who is an expert in Chiari Malformation and has done hundreds of decompression surgeries.  He disagreed with the other neurosurgeons and recommended surgery.  His reasoning was that this is a progressive condition, and the cyst will most likely grow and could cause irreversible damage to my spine.  Since I'm young, he recommended I take care of this now to prevent any further damage.  He couldn't guarantee that the cyst was causing my back pain and that surgery would ease the pain, but he thinks there could definitely be a linkage and surgery would help.

I've never had surgery before, and I'm very scared about the decompression surgery.  For those who have had the surgery, can you provide any insight into the recovery process, if the surgery helped with your symptoms (was it a success?), and based on your knowledge/research, do you agree that surgery is the best decision for me?

Thanks so much for any help...I really appreciate any information.

[selmaS]

HI and welcome to the CHIARI forum.

I just wanted to welcome u to the forum...u had 2 zipperheads share their experiences and info.

I have not had the surgery and wanted to say I understand your fears. I am scheduled for tethered cord release on May 26th, it is a related chiari condition.

SO I am there with u, but as sissy said, if u r comfortable with ur dr, then u should be able to make the decesion.

I hope u continue to post ur questions, concerns and that u share ur experiences with us.

"selma"

[sissy114]

I just wanted to chime in and say that I had surgery Dec'08 and like Shane, I would do it again. I seem to be improving every day. My experience was much better than Shane's.
I wasn't in too much pain and seem to bounce back a little faster but Shane's Chiari
progessed very quickly where my symptoms had been going on for over 16 yrs. I would
listen to my NS, if you really feel comfortable with him, as long as he has done many,
many of these. I was very lucky to find this site and very grateful to Shane, because he
led me to the right NS.

Good luck!!
Sissy

[Shane99]

Hello Hak7. Welcome to the forums.

I had the operation just a little over a year ago. I was diagnosed with Chiari (20mm herniation) and Syringomyelia. By the time it was discovered some damage had already occurred to my spinal cord. I still have some paralysis in my right arm and hand.

I know it's very scary to consider, but it's important to understand that this will not go away on its own. While no one but you know how you feel, you need to realize that this may continue to get worse.

Dr. Barrow is right. He can't guarantee the success of the surgery, but if he's concerned and recommending it, it's probably reaching a level where it needs to be addressed. This is a decision that you'll need to make with input from your Neurologist and Neurosurgeon, but if it's any help, even with the problems I still have, I would have my surgery again if necessary.

As for recovery; everyone is different of course, and I'm not going to sugar coat it for you - generally the first few days are bad. You should be in the hospital for around 4 days - a couple in ICU, then another couple in a regular room.

When you go home you should feel pretty bad for a few days - you'll be able to get up and go to the bathroom or set on the couch some, but mostly the first couple or so days you'll be in bed and need someone to watch over you.

After a couple of days you should be okay for a few hours by yourself - able to make a sandwich or microwave food, etc.

You will probably be out of work/school/etc for around 6 weeks. You'll need to ease back into things. And it can take a year or more for you to be "all better". Primarily it'll take a while for your immune system to be 100%.