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..