Chiari Online Support Group

Having possible trouble with cranial cervical fusion

Hi I’ve had 2 decompressions, a detethering of the spinal cord and a cranial cervical fusion to C5 with a revision. I’ve now had pain for over the past 2 months and my dr thinks there could possibly be something wrong with the fusion. Has anyone else had this issue?

My question to you is did they ever figure out why you needed 2 Chiari decompression surgeries? That is very rare- only about 5%… it happened to my 13yo son. After the 2nd decompression last year my son did not get any better.
We recently found out he has intracranial hypertension- diagnosed by Lumbar Puncture. High pressure will push the brain down. Low pressure will pull the brain down. Either of the 2 conditions will cause continual headaches & a multitude of symptoms. Good luck to you in finding an answer:)

blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Can I ask you another question? What did they end up doing for your son to help him? And is he better now? Thank you for any response and help

blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Hi,Thank you so much for your response. My first decompression failed in less than a year and I had already reherniated plus was told a lot of other things needed to be corrected from first decompression. Since then I’ve just had one surgery after another. I’m so sorry to hear about your son. My daughter also has Chiari and has had one decompression but is doing pretty well since her surgery. It is so difficult to watch your own child go through so much pain. I hope your son is doing better now. I will keep you and your son in my prayers. Thank you for the info it was helpful. It’s so hard to find good doctors though. I’m willing to travel anywhere for the best care! There doesn’t seem to be any here in Az. Do you know where the best doctors are for chiari and possibly the condition your son has? Thank you again for your help.
Thank you so much, Sheryl Shipp

I don’t think there is a more difficult ortho surgery than a spinal fusion of any kind. There have been some recent advances that make it possible to tweak it if they get it off a bit. but all that aside no fusion will work without a lot of muscle work and strengthening. Have you done any PT?

Hi Sheryl,
We actually had to go out of state for treatment. We are in Illinois & traveled to Duke Hospital in Durham, NC. My son had his surgery about 10months ago & was not getting any better. He developed POTS about a year ago & we found a neurologist specializing in autonomic nervous system dysfunction… that led to many MRIs and then a CT myelogram. They did a lumbar puncture & were told his pressure was at 1, indicating a spinal fluid leak. At the time of his 2nd decompression an LP was done to get baseline- it was “zero”. This was never explained to us. … I kept pursuing this. The NS said there was nothing more he could do. We had a blood patch attempted, but anesthesiologist wasn’t able to draw enough blood. My sons headaches are constant- NEVER go away- go up & down from 2-10… he has constant tinnitus, sensitivity to sound, leaking fluid from left ear… decided enough was enough & researched this. Dr. Gray at Duke is expert in this field. Also Cedars Sinai in California.
She said most NS don’t know how to properly perform an LP. My son was misdiagnosed… My sons CSF pressure was actually 25.8… indicating intracranial hypertension. This accounted for all his symptoms.
I wish my son had been tested by LP when he was first diagnosed with Chiari. I believe his pressure has been high for the last 5 years. ANYONE diagnosed with Chiari should in my opinion have LP done to make sure there is not a CSF problem wreaking havoc with the nervous system. Both conditions are rare & that is why I think they don’t test for them?
My son has been on diamox for about 2 weeks now… no relief yet. But praying with time & med adjustment he gets better. Sorry to hear your daughter has condition too:(
If her symptoms persist I would definitely pursue LP. It’s all up to us as parents. We have to advocate for ourselves. Best wishes:)

Thank you so much for your help. I certainly pray your son gets better soon!
Sheryl

Hi,
I’ve tried lots and lots of PT