Syringobulbia/ Brain Stem cyst

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Syringobulbia/ Brain Stem cyst

Postby whiteangel » Mon Feb 13, 2012 8:50 pm

hi, I was wondering if any one here has syringobulbia/brian stem cyst caused by a tumour in the spinal cord....what are your symptoms and if you had a shunt and if it worked?.....how big is or was your cyst....I've been having right flank pain and wondering if this might have something to do with it.........i'm have my MRI scan on the 28th...last time it grow 0.4 cm....I haven't had a shunt cos the risk is too great, trying to drain it for now could cause the very same damage that I'm trying to avoid... interested to see if anyone else may know or be in the same situation...read my story for more info...
WhiteAngel, Low Grade Astrocytoma Spinal Cord Tumour @ C-1 - T-6 surgery back'n 1970 @ age 4-1/2 Brain Stem Cyst, Kyphosis, Scoliosis, Heading down the quadriplegia road, unfortunately. http://whiteangel0.blogspot.com.au/p/my-story_06.html
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Re: Syringobulbia/ Brain Stem cyst

Postby Catrine » Fri Mar 16, 2012 4:24 pm

Hi WA,

I was diagnosed with syringobulbia back in 1996 - although I'm sure I've had it longer. Mine was caused by a combo of my spina bifida (which ironically dr's referred to as a tumour in the 70's) and CM2.

I'm sorry to hear your story and completely relate to the fear of becoming a quad. It's one of the reasons I recently underwent shunt surgery, to avoid that happening. It still might and there are no easy solutions but you are not alone.

Are you seeing the best specialists in Oz? Could your dr. pass along your case to others in the US (like Batzdorf) for professional comment?

Take care
Catrine
Catrine
 

Re: Syringobulbia/ Brain Stem cyst

Postby whiteangel » Sun Mar 18, 2012 5:51 pm

hi Catrine

thanks for your reply...I am seeing the best specialist...we were going to put in a shunt but as you know they are not always reliable and at some stage it needs to be done again..........it's very risky....also in my case my cord is to far gone because of the radiation...

Did you have any improvements after the shunt...did it shrink?....do you have any pictures of your cyst?...if you go my blog you can see some of mine...
WhiteAngel, Low Grade Astrocytoma Spinal Cord Tumour @ C-1 - T-6 surgery back'n 1970 @ age 4-1/2 Brain Stem Cyst, Kyphosis, Scoliosis, Heading down the quadriplegia road, unfortunately. http://whiteangel0.blogspot.com.au/p/my-story_06.html
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