Living with Syringomyelia

Hello @laniek and welcome to Mayo Clinic Connect. You mentioned that you would like your daughter to be seen at Mayo Clinic in Rochester so I wanted to offer you the following link should you be interested in requesting an appointment for her: http://mayocl.in/1mtmR63

Based on her health history, having her seen as a multidisciplinary, teaching hospital that specializes in complex care sounds like a really good fit and plan.

Are you in state in MN or would you travel far?

We are MN - twin cities. I am hoping that she requests an appointment. I will forward the link to her. She is an amazing, amazing young woman. This latest is scary stuff. I'd love to see her have co-ordinated multi-disciplinary approch to care. Thanks for the link.

Hi there, I live near Longview and am curious if you are located nearby. I was recently diagnosed with Syringomyelia. No Chiara has been mentioned or found. Thanks!

Hi, I'm male and 29 from Missouri. And I was diagnosed with Syringomyelia at the age of 14 when I was having a routine eye exam and the eye doctor detected hydrocephalus and told me to go see a neurologist, and I got my diagnoses from there. I've had 5 surgeries but my current shunt has lasted the longest. Doctors don't think that I have Chiari malformation but I have all of the symptoms of type I and I believe that I have it, I just need to find a neurosurgeon that has experience with it. I recently did a fresh round of MRIs and I was rediagnosed with Syringomyelia and scoliosis.

I have chronic pain all day every day and very rarely does it ease up for a short time, I get back pain, neck pain, migraines and a lot of times all three at the same time. I'm on Tramadol 50mg x5 a day and that allows me to function, I have tried morphine and other pain meds so far Tramadol works the best. I have an excellent PCP doctor that doesn't want his patients in pain and even my neurosurgeon sent my doctor a letter recommending that I continue with it since he considers my condition inoperable.

So it looks like theirs a few people here that have it. What pain medication are you on? What else you do to help get your mind off of pain? Hobbies?

Hi and yes I have Syringomyelia but I allegedly don't have Chiari according to my doctor. I posted a little about myself on the previous page.

Hello,
I am a caregiver for a client who has been diagnosed with syringomyelia. He is age 66 now and was diagnosed at age 20. He once told me that when he was first diagnosed the doctor said that he would be wheelchair bound by age 25 yet he has defied those odds. Up until about 3 years ago he was living on his own, still able to drive and walked with only the use of a cane. However as his condition worsened he lost control of his legs while driving and ran into a pole and suffered some injuries. During his hospital stay and recovery he had regular physical therapy and learned to walk with a walker. Before he was released to go home the company I work for referred me as a home caregiver for him. I met him during his recovery and his physical therapists trained me on ways I could be of assistance for him. Once he was released he moved in with his mother and in the beginning I and his physical therapists and occupational therapists would meet with him there. His life changed drastically from being a functioning man living on his own to living with his mother and dependent on his sister for daily tasks such as grocery shopping, doctors appointments and the like. When I first started coming I helped him with some personal care and encouraged him to take a walk and do his stretches that were suggested by his PT's. Since I first started working with him we developed a pattern of coffee and conversation, shower and dress, stretching and walking and lunch. He functioned very well with the walker. However as time passed I noticed that his right leg became increasingly more difficult to move and his foot will drag. The PT's suggested stretches that would help him to lift from the hip to follow through with his foot so it would drag. Sometimes he is able to lift from the hip and sometimes not but I encourage him to keep moving. However the last few times we've attempted our routine walk I noticed it's becoming more difficult for him. I now have to follow with the wheelchair in case he needs to sit and regain his strength. The last couple of times I noticed that his gate is completely different and he struggles to move both of his legs. While using the walker he uses more arm strength to hold his body up. Now I notice that his arms are becoming sore and weak from holding up his body weight. I am frustrated and maybe also fearful. I am very new to the struggles of syringomyelia and so I am reaching out to this community for any help that you may offer that I can share or pass on to my client. Please forgive my very wordy post. But I would be appreciative on any incite that would help my client who also my friend.

Hello avalon11
I am a caregiver for a man who has been diagnosed with syringomyelia. Thank you for sharing your story. I've heard of Tramadol but don't know much about it. However I'm glad to hear that you've found something that helps you function.
I had a client who also suffered from chronic pain. He was several pain meds including morphine. However he was also a music lover so his sister and I put a playlist together of all his favorite songs and it seemed to help. Plus, I would also sing to him and really liked my voice. I think music was a great distraction from his pain.

I have peripheral neuropathy and am dealing with it reasonably ok. I also have syringomyelia which is causing me more discomfort, is there a support group for syringomyelia?
rob39
,

@rob39 I found this existing support discussion that has some active members where you may be able to share experiences with others with this condition.

Spine Health- "Living with Syringomyelia"
https://connect.mayoclinic.org/discussion/living-with-syringomyelia/
Jennifer

Hello Jennifer I wish to thank you again for your help. I have opened the site and I will enter a post and hopefully get some answers. rob39