Chiari Malformation with Syringomyelia (human)...

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Chiari Malformation with Syringomyelia (human)... Moderators: luluwhit, gotothewhip, cindyt, crossspur, ForumAdmin Jump to page :	Last activity 2014-04-09 3:26 PM 3 replies, 3068 views View previous thread :: View next thread
General Discussion -> Barrel Talk


cyount2009 Reg. Apr 2012	Posted 2014-04-08 2:37 PM Subject: Chiari Malformation with Syringomyelia (human)...
Expert Posts: 1898	Does anyone have experience with this diagnosis and more importantly the decompression surgery? I am currently waiting on my referral for the surgeon but I was hoping to get some first hand experience if there is anyone with any. How long did you have to stay in the hospital? Obviously everyone's recovery is different but I would really like to know how soon people were able to go back to normal life and most importantly ride again. I know my summer, fall and most likely winter is shot but maybe next spring? Hopefully? I went to the neurologist a few weeks ago due to debilitating ice pick headaches. He did a complete neurological exam and determined I had lost sensitivity to my right hand, arm, shoulder, right side of my head and face, neck and back. I had gone to the doctor for this 13 years ago when it first appeared in my hand and was told it was a pinched nerve. 4 years later I went to a second doctor when the numbness started to migrate up my arm to above my elbow, and I got the same diagnosis, pinched nerve. So when it started to progress up my arm and across my back and neck I just assumed it was that pinched nerve. The neurologist assumed they were primary headaches and the numbness was a complication of them but to be on the safe side he did an MRI before prescribing me any treatment. The MRI results determined I have Chiari Malformation 1 with Syringomyelia. Chiari Malformation 1 is where the Foraman Magnum (the hole your spinal cord runs through to your brain) is to small and the cerebellum herniates through the hole putting pressure on the the cerebellum and spinal cord. Syringomyelia is a cyst that develops in the central canal of the spinal cord restricting the flow of the cerebrospinal fluid and if left untreated can elongate and destroy nerve endings causing at worse quadraparalysis and at best nothing, however my symptoms are worsening so the neurologist feels it would be in my best interest to do surgery.
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Cowgirl Up!_1 Reg. Jun 2013	Posted 2014-04-08 3:57 PM Subject: RE: Chiari Malformation with Syringomyelia (human)...
Regular Posts: 90	I don't know anyone that's dealt with it, but I just read this article a few weeks ago. In the comments, I remember people mentioning their own experiences. http://www.xojane.com/issues/arnold-chiari
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turnnburnkota Reg. Jan 2009	Posted 2014-04-09 2:36 PM Subject: RE: Chiari Malformation with Syringomyelia (human)...
Veteran Posts: 224 Location: So Cal	I don't have info on decompression surgery, but have done research on Chiari since I have a "borderline" MRI... I have a 4.7mm herniation when apparently 5mm is considered Chiari. I have daily headaches and frequent migraines but they aren't typical of Chiari (ie brought on suddenly by a cough, etc) so the doctors don't think that's what it is. There are a lot of good websites and even forums of people telling their experiences with Chiari, the surgery, etc. Good luck!
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Tallarico Reg. Jun 2013	Posted 2014-04-09 3:26 PM Subject: RE: Chiari Malformation with Syringomyelia (human)...
Member Posts: 45	I've been dealing with my Chiari for at least 10 years now. Started out with mild headaches, then progressed on to complete blackouts when i would tilt my head back for any longer than 10 seconds. I don't have the extreme numbness in any extremeties YET. I have severe headaches and can't lay on anything harder than my pillow or sit in a chair that touches the back of my head for a long time without ping pong sized knots welling up under my skull (thats how i describe it to people who don't know what it feels like). My team of neurologists at Baylor College of Medicine wanted to do the decompression on me a few years ago when my herniation was almost 2 centimeters. Being a single mother with no help prevented me from going through with it. At that time, the down time and progression to "normal" life was around 6 months, taking into consideration there were no problems with the surgery (that in itself is a whole different conversation). I've found ways to manage my pain and the weird symptoms it brings on from time to time, but as someone who's suffered severely I honestly and truly feel for you.
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