Thank you to all. Its kinda weird living with these issues for so long and finally its stumbled on about cm1, which I have never heard of until 31 of Dec and now I’ve learned alot about it and heck there is even a support group. That’s awesome I still have 3 MRI on super bowl sun l, to make sure everything else is ok. I’ve got a ? For those who had surgery. How long did it take to recover and how is the outcome
Scott, I returned to work after 2.5 months, but I was still extremely tired and not myself til about month 7. It truly is different for every person though.
Jenn
Thank u. Are your symptoms gone? Is it true that it is not a cure and what does that mean that it will come back or??? My doc told me 2-3 days in icu then 5-7 in hospital and that it is one of his roughest surgeries to recover from that’s scary right there! Also I work nights at Simmons chicken so sorry for the weird hours
Scott, some of my symptoms are better, but I still have a headache. I have hypermobility (Ehlers Danlos Syndrome) and I believe that has caused a cranial cervical instability (a common thing with Chiari patients). CCI symptoms mimic Chiari symptoms, so in many ways I feel the same as I did before. But so glad I had the decompression surgery- there was so much CSF hypertension from the crowding in the base of my skull it caused some nerve tumors and arachnoid webbing. I’m waiting to see another surgeon about the CCI.
It is true that decompression is not considered a cure. Although some people say they are symptom free after surgery, there are many people who still have symptoms of varying degrees. It’s important to understand the other health problems that can tag along with Chiari because they can continue to cause symtoms after surgery.
Hypermobility syndrome/ Elhers Danlos Syndrome- can cause cranio cervical instability. You NEED to know if you have this before surgery. Google the Brighton test and the Beighton test. Google CCI, there are several types of CCI.
Dysautonomia- partial deregulation of the autonomic nervous system. Can cause heart palpitations, anxiety, sweating, syncope, nausea, fatigue and many other sympts.
The hospital stay the surgeon mentioned sounds about right, and the full recovery can up to a year or more.
Jenn 