Living with Syringomyelia

Posted by nancy82415 @nancy82415, Nov 2, 2019

I have been a member of Connect for a couple of years. I am hoping to connect with others that are living with Syringomyelia. Hoping to share experiences. I was diagnosed with both Chiari Malformation and Syringomyelia. I follow the Brain and Nervous System page for Chiari, but would really like to connect with individuals living with Syringomyelia. I haven’t found a discussion on Connect regarding this. So lets start the discussion………

@lillyfam

I have been Diagnosed with Syringomyelia and I’m wondering if anyone can share of any Neurologist at Mayo you may have seen with the same DX. We are a Military family and have been told that we may move to ANY place we choose and we must choose this week. I’ve been going to Kosairs in Louisville Ky since diagnosed and feel they have me running in circles with no relief. My pain level is always a 7-10 acupuncture 2 times a week as well as physical therapy, not helping and Doctors seem to not be familiar enough to help me. Searching for help in a desperate way. God bless

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Hello. I am so sorry to hear of your pain and your troubles. I have a cousin who was diagnosed with Syringomyelia. She was advised to go to a major metropolitan teaching Hospital that sees this condition more often. She had surgery in a Chicago Hospital and the surgery truly saved and changed her life. She went from having terrible pain like you have, migraine headaches, balance troubles to after surgery and physical therapy… to being back to who she was prior to being diagnosed. She went back to college, graduated, worked full time, married and has lived a very productive and happy life. I wish I knew a MD at Mayo Clinic who does this special surgery but I believe with a few phone calls to the Main Mayo Clinic phone number…they will connect you with the right MDs and Surgeons who specialize in treating Syringomyelia. I am pulling for you to be able to regain your health and life back.

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@tbaxter33

Anyone familiar with Syringomyelia ?

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Hello @tbaxter33, I did my own research and am I understanding correctly that syringomyelia is the development of fluid-filled sacs within the spinal cord? https://www.mayoclinic.org/diseases-conditions/syringomyelia/symptoms-causes/syc-20354771. If you don't mind and are comfortable sharing, is this something you have been diagnosed with?

I'd like to invite @fitchizumi, @sallymagint, @jujubbb, @luckygirl, who have recently discussed having syringomyelia on Connect and may be able to share their experiences with you. I would also live to invite back some members who have not be active in awhile in hopes they will return to Connect to share their experiences: @obrien, @christinemullen, @diane63, @deemath.

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@tbaxter33

Anyone familiar with Syringomyelia ?

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Hi Justin. Yes, that is the diagnosis. I am just looking to learn if others are symptomatic and what the symptoms are. I have lots of chronic back pain as well as shoulders, arms, neck, etc. In my case, there are two different "syrinx" noted — one in the cervical area and one in the thorasic area.

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@tbaxter33

Anyone familiar with Syringomyelia ?

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Hi Justin, I understand that people are born with these in their system. Mine is in my cervical spine C2 to 7, I Belong to an organization in Texas you can read the newsletter ASAP.org Been a member since 1992. My pain started after a Trauma when I was 24. 1964 .I found out the problem in 1992. And MRI showed what I had. I have been on Neurontin since then. I Live with nerve pain my right trunk And extremity. The Neurontin help somewhat but, I can’t take too much of it ,makes me very tired and dizzy. There are groups around the countryhaving meetings. I am never without nerve pain . As I tell my doctor it runs from “stem to sternum.” Get yourself a very good neurologist who has knowledge of Syringomyelia. Years ago before 92 I was told it was in my head! Some neurologist have limited knowledge of Syringomyelia you don’t want them. Do you have Chiari malformation also? Syringomyelia & Chiari Project po box1586. Longview TX 75606-1586 Phone 903-236-7079 Get in touch with these folks also they can be a great help.

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@tbaxter33

Anyone familiar with Syringomyelia ?

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As for me, no Chari. Yes, I can relate to the pain. The belief is that mine started with a trauma about 10 years ago after being thrown from a horse. I am finding that most providers don't really know what to do with the condition, and really do not know how to deal with the pain. I have been seen by a very knowledgable physician on the condition in another city. I plan to follow the progression of the growths with regular visits to see him (probably semi-annually). I don't think most understand the intensity of the pain. I am unable to take NSAID medicines (which previously helped a lot) due to kidney issues, so Tylenol is about all that is left and really does nothing for me. I am involved in some trial procedures to help relieve lower back pain and will address the cervical and trunk area next. Maybe it will help, though it provides only relatively short-term relief involving some localized injections. I have had 4 MRI studies in the past 6 months dealing with it. Thank you "fitchizumi" for the informatoin on the project in your area as well as the contact information. Perhaps they have some information on options in my area. Again, thank you.

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Hello @nancy82415. I see you have met many members in the chiari malformation discussion (https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-20782d/) but would like to discuss syringomyelia with Connect members. I'd like to invite @resawaller, @tbaxter33, @fitchizumi
@adam782002, and @luckygirl to this discussion as they have all discussed syringomyelia on Connect in the past. @nancy82415, if you don't mind starting the conversation off, what aspects of living with syringomelia would you like to discuss?

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@JustinMcClanahan

Hello @nancy82415. I see you have met many members in the chiari malformation discussion (https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-20782d/) but would like to discuss syringomyelia with Connect members. I'd like to invite @resawaller, @tbaxter33, @fitchizumi
@adam782002, and @luckygirl to this discussion as they have all discussed syringomyelia on Connect in the past. @nancy82415, if you don't mind starting the conversation off, what aspects of living with syringomelia would you like to discuss?

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I was diagnosed back in August 2015. Had surgery September 2015. Syrinx was at least 11mm starting from my foramen magnum to my T6. It decreased in size, but it has gotten longer. Recently have noticed after doing physical labor (yard work) I am finding that my legs feel tired. They also feel stiff after sitting for awhile. This starts right away and continues for a few days after. I am documenting this in my journal to bring up at my next neurology appt this summer. I will then be getting a full spine MRI. This will then show how long the syrinx is. Last full I was at T9. So I guess I was wondering if others are experiencing this.

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Anyone familiar with Syringomyelia ?

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I have been Diagnosed with Syringomyelia and I’m wondering if anyone can share of any Neurologist at Mayo you may have seen with the same DX. We are a Military family and have been told that we may move to ANY place we choose and we must choose this week. I’ve been going to Kosairs in Louisville Ky since diagnosed and feel they have me running in circles with no relief. My pain level is always a 7-10 acupuncture 2 times a week as well as physical therapy, not helping and Doctors seem to not be familiar enough to help me. Searching for help in a desperate way. God bless

Liked by nancy82415

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I am seen by a neurologist at the Minnesota campus. The neurology and neurosurgery departments absolutely rock!!!!! I was diagnosed with both Syringomyelia and Chiari at Mayo. Surgery was performed there as well. Check out the Mayo Clinic for a list of all the neurologists, their specialities and which campus they provide outstanding care.

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@tbaxter33

Anyone familiar with Syringomyelia ?

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What did you want to know?

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@lillyfam

I have been Diagnosed with Syringomyelia and I’m wondering if anyone can share of any Neurologist at Mayo you may have seen with the same DX. We are a Military family and have been told that we may move to ANY place we choose and we must choose this week. I’ve been going to Kosairs in Louisville Ky since diagnosed and feel they have me running in circles with no relief. My pain level is always a 7-10 acupuncture 2 times a week as well as physical therapy, not helping and Doctors seem to not be familiar enough to help me. Searching for help in a desperate way. God bless

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See note below. I somehow messed up when replying. 🙂

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