Great information Lori, I too have a syrinx! Silas
From: Lori Michaelson [mailto:[EMAIL PROTECTED] Sent: Wednesday, March 26, 2008 4:05 PM To: RONALD L PRACHT; Quad List Subject: Re: [QUAD-L] quick question to syrinx folks <res://C:\Program%20Files\NaturallySpeaking9\Program\web_ie.dll/QMARK.GIF> <res://C:\Program%20Files\NaturallySpeaking9\Program\web_ie.dll/ARROW.GIF> Hi Ron, I can't recall whether I was told that something would worsen the syrinx. But, in any case, I KNOW what does... exertion of any kind. Having one (even collapsed by draing it like I did) is more paralyzing for me because the smallest little amount of exertion like pushing a button with a knuckle or stretching too far to pull something toward me at my desk or any combination of things like that. My left hand and arm are pretty useless so it is my right arm that I use the most. Unfortunately... my shunt is located in the lung cavity of my right lung. So any exertion with the arm that I can use... the pain gets worse and I can feel my right pupil dilate. Pupil dilation means pressure of the cerebral spinal cord fluid and that is how I originally was finally diagnosed. So I avoid any exertion. That leaves out exercise! No comments from the peanut gallery about sex... LOL! ********** No one told me to seek surgery exactly. I lived in a small town in upstate New York and knew something was wrong with me for 4 1/2 years (abdominal pain and abnormal spasms) but nothing would show up with all my tests. One day when my ex got a new truck... he was lifting me into the front passenger seat to take a drive. I didn't feel anything out of the ordinary and was lifted just like I had been thousands of times before. But we drove up to my sister's house and she came out to the truck to talk to us. She asked me if I felt okay and I said "yes." She said that she asked because she noticed that my RIGHT pupil was dilated. That made me a little nervous but I felt okay so I ignored it. APPRARENTLY ... My spine moved wrongly ENCOURAGING the syrinx (that I did not even know I had) to expand and cause other symptoms. Definite autonomic nervous system symptoms. ********** Problem? The right pupil dilation did not go away. I was working at that time and my office partner noticed it. BIG BLACK PUPIL in a blue eye. After the second day or so I began to tell that it was dilated by feeling a little bit of pressure on that eye ... difficult to explain. A little more blurry too. After it did not go away for a week I decided to go to the emergency room and get a CT scan done of my brain. Since it was the eyeball... doctors and myself thought it had to be something with my occipital lobe area in the brain or something. I HAD NO IDEA WHAT A SYRINK OR SYRINGOMYELIA was back then in 1994. Not surprisingly... The CT scan was negative. But I was fed up by then because I still knew that something was wrong after 4 1/2 years of wacky symptoms -- ongoing. I finally took it upon myself to call Craig Hospital on the other side of the nation and a neurosurgeon actually called me back. They give information away freely over the phone. Something other hospitals won't do. Anyway... after I told him about my pupil dilation and my spinal cord injury... he told me to have an MRI done and that I probably had SM. This scared me because I had no idea what it was. So, in other words, I had to call the other side of the nation to get an answer for a possible diagnosis! Sure enough... the MRI showed a lengthy syrinx. ********** I wasn't told by anyone to do anything so I began researching it by myself. By then it was early 1995 and I had access to the Internet. The first place I found for mounds of information was the American Syringomyelia Alliance Project (ASAP). They sent me mounds of information and several pages of folks who had some form of it AND their names, addresses and phone numbers. Unfortunately, over 99% of those people had CHIARI SYNDROME (a congenital form of syringomyelia that forms at the base of the brain). Although very similar...IT IS NOT Post Traumatic Syringomyelia of what 2% of the spinal cord injury population (US FEW!) gets. Oh how lucky we are! Craig Hospital and most all neurosurgeons will now tell you that if you are not losing movement or feeling... not very wise to have surgery. Or, if you choose to have surgery, they will tell you that there is only a 50% chance that draining it (via a sunt) will help. In 1995 they were not telling me not to have surgery but they weren't encouraging it either. In other words... it was up to me. But I was so desperate for relief of my hellacious spasms that I got three opinions and decided to go ahead with surgery. It was good and bad. It stopped the abdominal discomfort and BAD spasticity but now I have more pain up and down my spine (mostly upper area) and the pain paralyzes me more. As far as I know my shunt (in my lung cavity) is still draining but I have pain where it is. Part of it is muscular and my current doctor thinks that after awhile the shunt will start hurting after being woven in between nerves and muscle tissue/fibera back there. But removing it could make the syrinx expand again and I don't want that! Craig Hospital suggested untethering the spinal cord but, again, they tell you there is only a 50% chance THAT will help. Bottom line... I'm not even comfortable with Craig Hospital docs working on my spine. With my luck... I would come out more paralyzed than I already am. No thank you! I don't think it would help the spinal pain either so I am just living with it with the help of some medications. I have good days and bad days. I didn't know how else to answer your questions without writing all of this. I know I have written here before so I am going to save this copy so I don't have to type it all over again the next time someone needs the information. :-) Lori Michaelson Age - 43 C4/5 complete quad, 28 years post Tucson, AZ -------Original Message------- From: RONALD L PRACHT <mailto:[EMAIL PROTECTED]> Date: 3/24/2008 11:33:02 PM To: [email protected] Subject: [QUAD-L] quick question to syrinx folks What were you guys told will worsen the syrinx? At what point were you told to seek surgery? im dealing with mine still but im hurtin everyday goin on.not really changing anything...just wonderin your thoughts. ron c7
