It double posted. Please respond to the first post and maybe the moderator can delete this post?
Hi and welcome to the Chiari forum
The other post was deleted.....so this post is the one we can use.....the MODS tend to look if there are any replies and may have noticed there was one, but may not have read it was you......no worries.
How to research your NS...well....the best way is not only have they done this procedure b4 but what precautions do they take for ALL related conditions? That means those in addition to Syringomyelia?
All NS's can perform this decompression.....but that does not mean they have enuff experience and knowledge as a true Chiari specialist.
You should be tested for related and non related conditions....non related are MS, Lymes, and Lupus as they have the same if not similar symptoms....then the related conditions.....you had Syringomyelia DX'd...what area of your spine is your syrinx? Did they do MRIs of your complete spine? A syrinx can form in any area so thoracic, and lumbar as well as cervical should be checked and it can also help detect disk issues, scoliosis and tethered cord.....
Then we have sleep apnea to rule out as well as POTS, ICP. CCI ...and Ehlers- Danlos.......kinking of the brain stem and retroflexed odontoid.
If your NS knows nothing about these issues....then I would suggest looking into a few others....it tends to be these unDX'd issues/conditions that can affect recovery.
Have you had a CINE MRI?....when was your last MRI?
Thank you for responding. I had to wait to respond because I was away for the weekend and didn't have a copy of my records.
So my diagnosis is right cerebral tonsil is 1.02 cm descended and my left is .36cm. I have a central cord cyst C5 to T1.
So far I have had a cervical spine MRI, done about a month ago. Tomorrow I am having a head MRI (to check for hydrocephalus) and a MRI of my lumbar spine. My GP is the one who ordered the MRI of my lumbar spine, after I came to her in tears with pain in my lower spine that radiated to my legs. My GP also tested me for MS, Lymes, Lupus, Rheumatoid Arthritis, about 4 months ago. That is before my diagnosis of the syrinogmeylia. I just told her that I hurt all over. My dad and aunt both have decently debilitating fibromylgia, so I assumed it was that. Then I stopped being able to raise my arm. Went to a muscle doctor who referred me to a peripheral nerve specialist, who found my syrinx and refered to the the NS.
I am almost certain I have sleep apnea, but I am just curious how that affects the surgery? I read on a facebook page that it is the silent killer of charians.
So I believe ICP will be able to be diagnosed with the cerebral MRI? Same with CCI? As far as POTS and Ehlers Danlos, I don't have any of the symptoms at all.
I think I might try to go get images of my MRI tomm and get them posted on here to see what people think? I see people do that on FB all the time on the support groups.
And no I never had a CINE MRI. If I am having the decompression, which is supposed to aleviate the syrinx, shouldn't that fix them problem even if I am having flow issues now?
I know these are a lot of questions. Thank you again.
Let me tell you I also did not think I had any symptoms of EDS....and I was wrong....do not make an assumption....have yourself tested and rule it out as with sleep apnea....
It depends on which type of sleep apnea you have obstructive or Central sleep apnea...obstructive is just that something is in the way....with Central it is the brain not sending proper signals....post op they will need to keep you on oxygen and check your blood oxygen levels as it can get dangerously low due to surgery.
A syrinx can be due to an obstruction of CSF flow...it can also be due to an injury....
Surgery is done to help restore CSF flow...and a CINE MRI will show just where the flow issue is....and the hopes is a syrinx will shrink post op....
Sometimes ICP may require a LP to DX.
CCI they tend to do a flextion and extention Xray.....
Have ALL the testing regardless if you feel you have it or not...as these conditions can affect recovery if/when you have surgery.
Not to make you worry but I've had NS quote the number of surgeries they have done,aswell as how may if their patients have Chiari.
When 1 particular NS told me he had 400 Chiari patients,well the statistics of Chiari acurance made his statement impossible,he flat out lied to me, obviously this man would need roughly 40,000 surgical patients for his statement to be true.
To my knowledge, there's no way to check their surgical history, reguarding statistics of their surgery success rate for any 1 procedure,IMHO there should be.