I was recently diagnosed with a syrinx that goes from my c-4 to c-7 vertebrae. My orthopedic dr found it while looking for the cause of my pain and numbness. He referred me to a neurosurgeon and when he looked at the mri he said that I had a chiari malformation and that is what caused the syrinx. My question is does the surgery work most of the time and when you have it what is the general recovery time. Any feedback would be greatly appreciated!
Hi there,
My understanding is that when one has a syrinx and a Chiari 1 Malformation, decompression surgery is the treatment course.
The goal of the surgery is …the syrinx will shrink in time…cerebral spinal fluid flow will be restored.
Everyone recovers differently…I can share my recover, however…
I had my surgery in 2008…I did not have a syrinx…
I was in the hospital , 7-8 days…the reason I was in so long was because I had a lot of nausea and once that was resolved …I went home.
I would say the first few weeks were quite painful… But my NS was wonderful with managing the pain.
I am so grateful that my NS told me that it is normal to experience new symptoms after surgery…but they would go away in time…I had such vertigo after the surgery…scary…I would have flipped my lid if he hadn’t told me this was normal!!
He explain the rationale …since my brain/body had been use to diminished CSF flow…the brain was going to have to adjust to the new flow…causes new symptoms.
I had no infection or complications from the surgery…it took a 6 mths before I felt ok with driving…I think if I had to drive , I could have…but…I wanted to make sure I was comfortable with driving .
Today, I feel as though I am better than before surgery…still have issues…but, I am still glad I had it done.
Take care…keep us posted on how things are going.
Lori
I did not have syrinx but I did have surgery. I was in the hospital one night only. The usual stay is around 3 days but I had my pain well controlled and was able to pass the various tests given by PT and OT. Pain wasn't too terrible for me. Some headaches, neck pain, and mostly extreme fatigue. I was out of work for 8 weeks. No driving for 6 weeks. Also no bending over or lifting more than 5 lbs. I am much improved since surgery and was fortunately to have a fairly easy recovery.
Brenden, I was in the hospital for 5 days, home and not working for 10 weeks, not feeling like myself till about 7 months. Statistically, from what I have read (and each surgeons stats will be different depending on their skill level) that most people improve after surgery (around 70%), some stay the same, some get worse. Finding a surgeon who specializes in Chiari is important because not all surgeons do this procedure the same, and their outcomes are not the same. I’m not suggesting that you will have to travel to get to a specialist, but many of us have travelled to another state.
Please also look into these other conditions that tag along with Chiari.
Ehlers Danlos Syndrome/hypermobility Syndrome- can cause cranio cervical instability that can cause decompression to fail if not fixed at the same time.
Dysautonomia (common type with Chiari is POTS
Tethered cord
Sleep apnea
Vitamin d deficiency
So glad you are here.
Jenn