Lori, when you 1st had syrinx surgury, was it because of pain? I am having new things go on with my body that really scares me... My spinal cord rehab doctor took Mri's and said it looks like a few things could be going on........BUT the syrinx is definity growing he said and for me to go to a neuro soon. When i get up in my chair the pain begins to get worse after 3 or 4 hours and my back muscles seem to be pulling or contracting- and start having body spasms. i take pain meds and it helps stop the spasms but don't really stop the pain, just helps me deal with it a bit easier. Some days it comes on way worse than others--it feels like someone is pushing a broom handle or something into my mid back area and it does not let up, also pain seems to get intense going thru my abdomen and down thru my legs. it's hard to explain and to get much relief , i have to go to bed then after a while the severe pain gets better. It's hard to explain. I'm trying to get my neuro appointment set up to see if they may have any idea on what's going on or if anything can be done.( the episodes are becoming more frequent and more intense for me. ( Danny H. ) --- On Fri, 8/14/09, Lori Michaelson <[email protected]> wrote:
From: Lori Michaelson <[email protected]> Subject: [QUAD-L] syrinx To: [email protected] Date: Friday, August 14, 2009, 1:34 PM My e-mail below was sitting in my drafts folder so I did not really know if it actually got to the list or not. I think it did but in case it did not here it is again: Dan H., Ron & others, Like I have said here probably 50 times or more - my syringomyelia makes quadriplegia look easy. However, unless I start to lose more movement or feeling - no one is going to fiddle around with my spinal cord again. Not even Dr. Falci at Craig Hospital. As far as going further and "untethering" - even Craig Hospital admits that the end result of the surgery has a 50% chance of helping. Good luck with whatever you decide to do! I am just hanging in there with the pain and the body hypersensitiveness. Lori Michaelson Age - 45 C4/5 complete quad, 29 years post Tucson, AZ On Wed, Aug 12, 2009 at 5:26 AM, Danny Hearn <[email protected]> wrote: I'll let you know Ron, We are trying to decide if I should see Picker at St.Johns or Wright, who you told us about. I saw picker after first being diagnossed with a syrinx in about 1999 or 2000. But my daughter works for Washington University as a medical Assistant and seems to think I should see Wright, thinking he may have more experience. I think both may be pretty good. Dr. Wice said it seems there may be 2 things going on and that the Sirinx is definitly growing also, and said go see a neuro to see what they think. It will be about a month to get in to see them. All the serious back pain and problems have started getting real bad this year--- It is real scary , I feel pain in area's of my back that used to have no feeling.I hope I don't loose function or ability to be transfered or load myself in our van. For years my thinking was---being paralyzed sucks, it can't get much worse than this ! ( But believe me I wish I could go back to prior this year--those were the good ole days, lol ) I take pain meds every day now and even driving around my neighborhood in my wheelchair I need to go slow over bumps and cracks or it makes the pains worse. ANYWAY-- I'll let you all know when I see the neuro surgeon. Dan H. --- On Wed, 8/12/09, RONALD L PRACHT <[email protected]> wrote: From: RONALD L PRACHT <[email protected]> Subject: [QUAD-L] syrinx To: [email protected] Date: Wednesday, August 12, 2009, 1:22 AM Hey Dan H, please let me know what you find out concerning your syrinx. Im going down the same road as you.......will be going to wice to find out if mine has grown. Im interested in what the surgeons tell you in regards to what to do at this point. I truely wish the best results for you. ron c7 -Slate -- Lori C4/5 complete quad, 27 years post Tucson, AZ
