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Living with Syringomyelia. Share your experiences.

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.........

Interested in more discussions like this? Go to the Spine Health Support Group.

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fridaygirl78 | @fridaygirl78 | Feb 2, 2025
In reply to @jenniferhunter "@fridaygirl78 I wanted to welcome you to Connect. I don't have experience with your condition, but..." + (show)
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@fridaygirl78 I wanted to welcome you to Connect. I don't have experience with your condition, but here is Mayo's information if you want to learn more. I hope your doctors can offer help for your pain.
https://www.mayoclinic.org/diseases-conditions/syringomyelia/symptoms-causes/syc-20354771

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Thank You Jennifer for the welcome.

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rob39 | @rob39 | Feb 2, 2025
In reply to @fridaygirl78 "Thank you for replying rob39, Sorry to hear your health has taken more hits. I googled..." + (show)
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Thank you for replying rob39,
Sorry to hear your health has taken more hits. I googled CIDP, Ive never heard of it, sounds very invasive to diagnose. Diagnoses are always a bittersweet time you feel relief that you have answers but then the reality of the illness kicks in. Chronic illness is a never ending battle. Wishing you all the best too.

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Just a short reply thanking you for the good wishes. I will try to follow your posts to see how you get on. Take care, Regards Rob 39.

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stonaus | @stonaus | Feb 16, 2025

I have similar symptoms as agee3003, I have idiopathic cervical syringomyelia c2-5, which is now about 5mm with nerve compression on MRI. I have known about it for 6yrs while it was about 4.5mm, so the growth is very slow, but in the past 2 years my symptoms have been rapidly worsening. I also have trouble holding on to anything. My hands go numb or feel weak and sometimes the muscle or nerves hurt. I can not reproduce the symptoms, it just happens and goes away soon. I have headaches, eye pain, chest pain and have started snoring too. Yet, I have good and bad days. I am kind of used a certain pain and numbness, but some days I can't get up or move. Is this all the syrinx? Other than the syrinx i have no other medical issues

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kritter19 | @kritter19 | Feb 19, 2025

I have a syrinx and diagnosed with so many things. It's been 3 years and I'm still looking for answers or a solution to my chronic neck pain:(

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kritter19 | @kritter19 | Feb 19, 2025
In reply to @nancy82415 "@tifany here is the definition of physiotherapy… therapy that is used to preserve, enhance, or restore..." + (show)
Profile picture for nancy82415 @nancy82415

@tifany here is the definition of physiotherapy… therapy that is used to preserve, enhance, or restore movement and physical function impaired or threatened by disease, injury, or disability and that utilizes therapeutic exercise, physical modalities (such as massage and electrotherapy).

I was diagnosed with Syringomyelia and Chiari Malformation in 2015. Both the syrinx and herniation were very large. I did have surgery, which was successful in that it did stop the progression, three weeks later. I have been doing massage therapy both prior to diagnosis and all the years since. I have found it very helpful.

Speak with your doctor for recommendations for someone to see.

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Did u have chronic neck pain before surgery?

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lhunter7 | @lhunter7 | Sep 2, 2025

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, 2025
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, 2025
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, 2025

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

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helendances | @helendances | Jun 5 11:07pm

I was just diagnosed with a thoracic syringomelia (T4-T10) yesterday. I remember feeling the deep, dull, pervasive ache as a kid and having my pediatrician saying "just sit in firm back chairs." This was probably around 1980. It has come and gone over the years, leading me to lean on heating pads.

The pain resurfaced after left knee meniscectomy surgery last December. I also have RA, OA, T2, HBP. I've been referred to a neurosurgeon so getting that process underway. I have pain that persists despite diclofenac and tylenol. The best pain relief was with fentanyl that I got post knee surgery. One of the challenges is that there are questions about symptoms but I feel like its been around so long that the relatedness of somatic and autonomic symptoms are hard to differentiate.

I wish there was a more differentiated group - maybe under neurology.

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