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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.........

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lhunter7 | @lhunter7 | Sep 2 7:12pm

I have syringomyelia. It affects t7 - T11. I have horrible pain in my neck and shoulders, and lower back. If I do nothing all day I'm ok but just doing anything will exacerbate it. I'm doing PT but I really don't think that will help. The neurosurgeon said surgery. How is your pain?

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rob39 | @rob39 | Sep 7 10:54pm
In reply to @lhunter7 "I have syringomyelia. It affects t7 - T11. I have horrible pain in my neck and..." + (show)
Profile picture for lhunter7 @lhunter7

I have syringomyelia. It affects t7 - T11. I have horrible pain in my neck and shoulders, and lower back. If I do nothing all day I'm ok but just doing anything will exacerbate it. I'm doing PT but I really don't think that will help. The neurosurgeon said surgery. How is your pain?

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I have had the syringomyelia pain for 40 years and have had several diagnosis and treatments . It was about 2 years ago after a full spinal MRI that syrinx from t4 to t10 showed up. I am 86 years old and I have CIDP and a progressive heart problem, since I am not as active as I used to be the syrinx pain is not a problem. The CIDP pain can only be described as "cruel" and by far eclipses the syringomyelia. I hope that you can get some answers and relief soon . Best wishes Rob 39.

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lhunter7 | @lhunter7 | Sep 10 12:20pm
In reply to @rob39 "I have had the syringomyelia pain for 40 years and have had several diagnosis and treatments..." + (show)
Profile picture for rob39 @rob39

I have had the syringomyelia pain for 40 years and have had several diagnosis and treatments . It was about 2 years ago after a full spinal MRI that syrinx from t4 to t10 showed up. I am 86 years old and I have CIDP and a progressive heart problem, since I am not as active as I used to be the syrinx pain is not a problem. The CIDP pain can only be described as "cruel" and by far eclipses the syringomyelia. I hope that you can get some answers and relief soon . Best wishes Rob 39.

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Thank you.

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lhunter7 | @lhunter7 | Sep 10 12:34pm

I'm sorry about your pain, do you take something ?

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