Thanks Lori! I assume I’ll be doing a lot of testing!
Nicki From: Lori Michaelson [mailto:[email protected]] Sent: Thursday, May 12, 2016 1:44 PM To: nichole rohling Subject: Re: [QUAD-L] Bowel Problems / Syrinx Hi Nicki, It took me 4 1/2 years to get diagnosed with syringomyelia and a lengthy syrinx between 1989 and 1994. My symptoms were so misleading. I thought I had some sort of an abdominal issue because my primary symptoms were severe abdominal discomfort and pain as well as a huge increase in spasticity. I had every test done possible thinking I had to be something to do with my abdomen (but I was not having any irregular bowel problems). I had x-rays, CT scans, sonograms, etc. of my abdomen and colon. I even had an upper and lower G.I. series and EVERYTHING was negative. It was not until my ex common-law husband lifted me into his truck in the passenger seat and we drove up to my sister's house. I sat in the passenger seat and my sister came out to see me because I did not bring my wheelchair. She asked me if I felt okay and I said yes and "why?" She said "Because you're right pupil is dilated." This was approximately 1993/April 1994 or so and I had had it. I KNEW SOMETHING WAS WRONG. It made going to work terrible. I was in pain all the time and my spasticity was out of control. That is when I called Greg hospital and a neurosurgeon told me to have an MRI [after I told him about my pupil dilation that stayed fixed for an entire week] to check for syringomyelia. Back then I had NEVER heard of syringomyelia and I was scared to death. I had a shot live-in and it failed and I almost died for two weeks in Brooklyn New York. I chose the wrong neurosurgeon but did not know it at the time. After that one failed I had a syringo-plural shunt put in and I had it there ever since. I had many follow-up MRIs and they have all said that shunt is still working but I have not had an MRI done since 1998/1999. Since I almost died I am not letting anybody touch my spine again unless I am on my deathbed. Bottom line - my syrinx never caused any problems with my bowels. BUT it caused all kinds of abdominal pain and discomfort. I even thought it was/might be bladder stones and I had a bunch of tiny ones removed but that was not the problem. For me, syringomyelia is more disabling then quadriplegia by far. I did not begin to have pain in the area where my shunt is until 2 years later but it is caused by the muscle/nerve area that the shunt is woven through. The pain medication I am on keeps the pain at bay unless I get hurt by getting moved wrong by a caregiver or overuse that particular muscle. That's my story. For you I would suggest thinking back over everything that has occurred over the last numerous months and by process of elimination... something might occur to you. Otherwise... I would also suggest having your stool checked for bacteria also. ~Lori C4/5 complete quad, 36 1/2 years post On Thu, May 12, 2016 at 11:13 AM, nichole rohling <[email protected]> wrote: I was having issues last fall with having to call my caregiver to come and get me on my shower chair about 2 hrs after I would get in bed. I would have diarrhea or very loose stools. Dr. started me on a probiotic and it did help. Only had to call caregiver once from November to last Thursday. I had to call Thursday night, Sat, Sun and last night (I took lomotil Monday and didn’t have to call Mon or Tues) I called Craig’s nurse hotline and she gave me several possibilities as to what we need to check. Syrinx was 1 of them ad I have been having a very odd excruciating pain in my shoulder joints. Anyone with a syrinx experience bowel issues? Or anyone experience bowel issues like I am. We’ll be checking a number of other things too but just asking for others’ thoughts, experiences. Nicki -- "Petting, scratching and cuddling a dog could be soothing to the mind and heart and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
