Living with Syringomyelia

I am trying to find support for my husband- he is 65 and has syringomyelia- he had his first shunt placed at age 28, it latest till he was about 51- then failed. At the same time he started falling and his gait was affected- the second shunt was done at UW Madison- he only latest a year and failed- the last shunt was placed in Mayo in MN.
He had a great team of doctors-by the time this third shunt was placed he was walking with a cane and/or crutches, had terrible pain in legs(spasms), was losing the feeling in both legs and some of the feeling in his arms and hands. His third shunt was done about 10 years ago. He is a large guy who is struggling to get his weight down, was told they couldn't do any more surgeries (to risky with his weight). He is in constant pain, terrible leg spasms, went from a cane, to crutches, to using a wheelchair and scooter. He fell last week and was on the floor for 5 hrs, the swelling in his legs is horrible - he is now in the hospital with sepsis, and a terrible bladder infection. In the last year has lost most bowel/bladder function (depend on the day). We are fighting now to get him into a good rehab center he needs to rebuild some leg muscle and learn how to use a slide board etc... his insurance is currently denying the rehab the hospital wants for him... another fight. I am trying to find a group he can talk to about this condition. I also am looking for someone I can talk to as his main caregiver..

Hello @woundedbear64. It is nice of you to come back and share an update on your health. I noticed you had previously shared about your symptoms so you will notice I have moved your post back into that existing discussion so that members can more easily see your update. You can find your post here now:
- Living with Syringomyelia: https://connect.mayoclinic.org/discussion/living-with-syringomyelia/

I see that @pkh3381 has joined you already. I am happy that you have an appointment at Mayo Clinic in Rochester. Were you originally seen in Rochester or will this be your first time?

I just joined Connect. I really know nothing how it works. Was reading some posts & suddenly there was an empty block to "comment" in so here I am. I am 72 years old. Had tingling & aching down right arm for about 6 months when I was 48y/o. The did cardiac workup and numerous other testing with no diagnosis. Finally sent me to a Physical Therapist who after 2 weeks called the ortho who was seeing mee & told him I need an MRI & that something was wrong beyond her, in my back. Diagnosed 4 days later with Syringomyelia. While treatment decisions were being made I sneezed & lost most of the feeling in rt arm. I began having episodes of falling & the pain in my back increased. The neurosurgeon removed a benign tumor that was at C4 to C6 inside the cord. Emptied the syringes that were C4 to T2 & lower T into higher Lumber(can't remember exact spot for 2nd syrinx. Too lazy to look in the mounds of medical paper work I have) Hospital X3wks and Sister Kenny Rehab X4wks at Abbott Northwestern Hosp Mpls,Mn. Had to learn to essentially walk again. Have about 70% feeling in my feet now as I do in the rest of my body from breathing line down. What I do have is a neuropathy type feeling in a lot of the rest of the body which I take only a little med for as I have kind of gotten used to it. The other thing I have is pain in my back. Lower area, in the linear muscles that run up & down each side of my spide & then across the width of my back about where my bra strap runs.
I judge the pain high at first & was treated with narcotics
(Now referred to as Opiods) But after 6 months or a year I think between the continuing PT, my own regular swimming 3/wk, trying to walk as much as pain would let me and getting over the shock that I would live with pain for the rest of my life.....I was able to settle to a routine of life with a small amount of narcotics and obtain a pain level of 3 out of 10. Another important thing I learned was to pace myself, use ice everyday & take a nap everyday. This made it all manageable. But I did not make back to work. I had bee the Co-Director RN of a County Public Health Agency working 40 to 50 hours a week. I could not do it . I count my blessings everyday that I am not in a wheel chair, even though part of all this crap is my legs get weak at times & I can't walk very far. The second blessing being that I had a very good disability insurance policy that I wasn't even aware of.
A year after the first surgery they had to put a shunt in the cord to keep the CSF from getting back into the Syrinyxes, even though they had almost completely closed after 1st surgery....it was starting again. But the shunt worked .
Been 24 years & I am sorry to say about 2 years ago I began to slowly decorate. Pain is back to 7-10. Tremors. Walking more than 2 houses down the street is impossible due to weak legs & back pain. My pain meds have been raised. I have some ablasions done. Some trigger point injections. All of which help for a period of time. But not long enough. The raise in meds & procedures only began in the last 18 months when I was persuaded to go to a pain clinic. Thank God.

I detiorated not decorated

I'll definitely keep you in my prayers, I can certainly relate with what you're going through. Unfortunately for us, syringomyelia isn't something many people have heard of, so it doesn't get the attention I think it deserves.

I'm very sorry to hear about your husbands condition, but it's good the Mayo has this support system in place. I've had syringomyelia since 1992 and only knew one other person with this disorder. Now having been on here, I've written to a few people that have or know someone with this disorder, so I don't feel so alone now. You and your husband will be in my daily prayers.

Seems as if no one has heard of it. I am a nurse & had 20+ nurses in my office & not one of us knew about it when I was diagnosed.

Exactly! It was the same with me back in 1992. The neurologist kind of knew about it, but he referred me to a neurosurgeon, and he knew exactly what it was.
To this day, when a doctor has a student with them, they always ask if its okay for the student to ask me questions, because they'd probably never come in contact with someone who has syringomyelia.