Living with Syringomyelia

I've been living with syringomyelia since being diagnosed and having my first shunt placed in 1992 in Chicago.
I moved to International Falls, MN. In 2003 and had weight loss surgery, I had lost almost 200 pound in under a year, in doing so my spine sprung like a spring and caused another syrinx to start growing in my thoracic area. I had the Mayo clinic in Rochester, MN. Put a shunt in that area of my spine. Within a short amount of time, that shunt started to clog off and on, but I dealt with it until very recently.
I noticed changes taking place, so I probably need that clogged shunt replaced, and I'm concerned I may need another shunt placed in my lumbar area.
I'm fighting to stay on my feet, I had a person I met online with syringomyelia, she became very special to me, she ended up in a wheel chair, and then passed do to complications of syringomyelia.
Does anyone else have syringomyelia and how are you dealing with it?

Hello @woundedbear64, There is another discussion that you might find helpful here:

--- Living with Syringomyelia: https://connect.mayoclinic.org/discussion/living-with-syringomyelia/

Have you discussed your concerns your doctor to see if they might have some suggestions for you?

Thank you.
Unfortunately where I live, the doctors have know real understanding of what syringomyelia is, but I'm setting up appointments at Mayo with,my neurosurgeon and neurologist this September, hopefully they'll figure something out for me.

@woundedbear64 I was diagnosed at Mayo Clinic in Rochester MN. Their neurology and neurosurgery depts are the best! They are very knowledgeable and skilled. I was diagnosed with Syringomyelia and Chiari Malformation. Both of which were large. I did have surgery performed there to stop the progression of both conditions. Surgery was a success. I continue to be monitored yearly by my Mayo team. I actually have my yearly appointment coming up in the near future. I look forward to going every year.

This was almost eight years ago. I am still employed full time, living alone and still able to do almost everything except a few things. What I am able to do it just takes a bit longer to complete, but I am able to do it. So I would say I am living a full and happy life despite having Chiari Malformation and Syringomyelia.

That's wonderful, I have been living with syringomyelia since 1992, I had my first shunt put in my cervical spine in Chicago.
In 2005 I started going to the Mayo clinic, I had another shunt put in that same year, in my thoracic spine, unfortunately that shunt started clogging right away. That surgery was done by Dr Duddly Davis. I now have Dr Marsh, so if I need another shunt, or need the clogged one replaced, he'll be doing the surgery.
I'm a big guy, 6'5" 260lbs syringomyelia humbled me quite effectively. I lost a friend do to complications of syringomyelia, so I know it effects people differently.
Syringomyelia caused a Charcot joint in my right elbow, and it's twisting my left leg around, among other things, but I refuse to give into this disorder.
But I'm glad that you're doing well.

<p>I have had syringomyelia for over 30 years now, and it seems to effect everything going on with my body,not counting the chronic pain associated with it.<br />I fell last November and must have damaged something inside because they said I was bleeding internally, then they found out I had Covid, which is still effecting me almost a year later.<br />I don't think they fixed the internal bleeding because I'm having trouble walking a few steps then having to stop to catch my breath, if I don't stop, I know I'll pass out and fall again.<br />I might have to go to my local hospital before my October 9th, 10th, and 11th visit with the Mayo clinic in Rochester, MN.<br />I'm so tired of all the health issues, I wish I could catch a break, even for just a little while.</p>

Hello @woundedbear64. You sound rather defeated, and for obvious reasons. When our health is compromised, so is our daily life. You will notice that I moved your post into an existing discussion on Syringomyelia that you can find here:
- Living with Syringomyelia: https://connect.mayoclinic.org/discussion/living-with-syringomyelia/

I see you posted in this discussion a few months back, so I felt the members might like your update.

I am encouraged that you have an upcoming appointment in October, which is just over a month away now! In the meantime, what have you been advised to do with regard to your breathing and falling concerns?

Hi,
I have been living with syringomyelia for over 30 years now, I have 2 shunts, one is in the cervical area and the other is in the thoracic area. and recently, I'd say over the last 2 years, I've experienced a couple of new symptoms I believe are related to the syringomyelia.
My left leg started twisting to the point my left foot is pointing more to the right than straight ahead, my left knee rubs against my right knee, and now I have sores on my left knee.
And the last symptom is, when I have to urinate my left leg starts jumping, and my left foot causes me quite a bit of pain, but as soon as I urinate, my left foot stops hurting and my left leg stops jumping.
I have an appointment for the second week of October at the Mayo clinic in Rochester, I have a feeling the thoracic shunt has clogged, and I may have another syrinx growing in the lumbar area of my spine.
Please keep me in your prayers, I just turned 59 at the end of July, and I'd like to get a few more useful years in before my time is up.
Thank you for your time.
Jeffrey/Woundedbear.

You will truly be in my prayers. I am so sorry for all you have gone through and will pray for a resolve that brings you back to some normalcy so you can live the rest of your life joyfully.
P

Thank you very much, I truly appreciate it!