Re: [QUAD-L] Ileostomy

[Gail Holmes]

I accompanied the quad for whom I worked for surgery on his syrinx at Craig Hospital near Denver about  10 years ago. Sadly he passed in 2020 unrelated to his surgery. His  symptoms were increasing pain and excessively low blood pressure but everyone is different.  If at all possible I would go to Craig’s hospital  to be evaluated. You may have to be referred. I know that’s not an easy feat!   There is a free phone line where a SCI nurse at Craig hospital  can answer questions or find the answers on all things related to SCI. You might need to call more than once to get the answers. If I recall correctly the surgeon said there was a high rate of shunt failure for syrinx  and that shunt surgery was considered old school but my memory is a little foggy. Don’t take my word 100% but check other resources. Maybe  there are better shunt surgery techniques now. This was 10 years ago.  The neurosurgeon was Dr Scott Falci and his incredible nurse was Charlotte. She is the one who could tell you more about shunts and syrinx surgery.  If you call have all your questions lined up. She is very busy and not easy to reach but is accessible or was back then.   His surgery was in 2 stages. Gosh I can’t believe I’m forgetting the details.i was only with him for the first simpler surgery and I think this first surgery was to decompress the syrinx and the second surgery was  to put a graft in place.  Craigs is a world class spinal cord and head injury hospital. There were folks there of meager means so maybe you don’t have to have great insurance which he fortunately did.  I do recall Charlotte saying that even with the best of surgical outcomes a syrinx can return in as little as 3 years. His pain was  less as a result of the surgery and maybe blood pressure only slightly better.  In the end I wondered if the results were  worth those 2 surgeries  but he did say it  definitely  was.   try to get a good second opinion before ileostomy surgery. best of wishes to you Gail  Sent from my iPhone On Dec 8, 2023, at 1:03 PM, Danny Hearn <ddh...@sbcglobal.net> wrote:  Hi, Val....i'm a c-6  level.....and I have had a syrinx for years, it has caused me increased pain more each year but have no eating or bowel problems, we use magic bullet suppositories for bowel routines every 3 days. Hope things work out for you !   Dan H. 26 years post injury.--car accident. On Friday, December 8, 2023 at 11:43:46 AM CST, Val Cleroux <vcler...@rogers.com> wrote: Hi everyone: I met with a neurosurgeon at St. Michael's Hospital in Toronto and he says that I have too much steel in my neck to be able to put a shunt.  I got 3 inches of steel down both sides holding my spine between C2-C7 straight.  They don't do steel surgeries anymore as that was 23 years ago.   I researched the syrinx and it says the first thing to deteriorate is my digestive system, and then after time, the other organs will be affected.  I'm down to eating only liquid foods, they still hurt but not as bad as chunky food. Thank you everyone for replying to me! Val Cleroux www.whyped.ca "Communication is the key to success"   On Thursday, December 7, 2023 at 07:29:43 p.m. EST, Edward Tessier <e...@artecopartners.com> wrote: Wow, what a journey Dana So glad you are still with us From: Dana <wraydan...@gmail.com> Sent: Wednesday, December 6, 2023 10:39 PM To: Eric Olson <whee...@wi.rr.com> Cc: Quad List <quad-list@eskimo.com>; Val Cleroux <vcler...@rogers.com> Subject: Re: [QUAD-L] Ileostomy   I had my first Ileo-conduit in 1986 from bladder cancer. Then In 2014 I kept having UTIs all the time. The kidney doctor didn’t know how to do the surgery that was needed to make another ileo-conduit. She wanted to put me on hospice. We started calling every kidney doctor and that was able to do the surgery. he got me on the table within two weeks. we had to have a long talk and explain to me 2.out 3 die during the surgery. So I was a blessed to survive. it took six months to get over the surgery. I was in the hospital three weeks. I continue to have UTIs and kidney stones. This allows you to get more bacteria causing kidney stones. I really liked the information I read on the  On Wed, Oct 11, 2023 at 12:09 PM Eric Olson <whee...@wi.rr.com> wrote: There was a person on the list that had a syrinx, but sadly, she passed away.  She had a shunt put in that let the fluid in the syrinx drain continuously into her stomach.  Since you're doing research anyway, perhaps do some research on a shunt.  Neither is a no joke surgery.  Are you sure your digestive issues are from the syrinx and not something more common like IBS? On Mon, Oct 9, 2023 at 1:08 PM Val Cleroux <vcler...@rogers.com> wrote: Hi everyone: I am a C3/4 quad from a motor vehicle accident in 2000. I have a syrinx which is a cyst that fills up with cerebral fluid and stretches down the spine. This cyst affects how the messages are sent from the brain to the organs in order to make them work properly. So far it has affected my digestive system and I am very limited as to what I can eat. My surgeon is suggesting an ileostomy and I am now researching to see if this would be beneficial or not? Is there anyone out there that has an ileostomy that I could speak with? Thanks in advance for anyone that can help me with information so that I can make my decision which a yes of a no? Val Cleroux www.whyped.ca "Communication is the key to success"