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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.........

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tifany | @tifany | Nov 12, 2024

Hello
A diagnosis of syringomyelia was made. It was said that physical therapy could progress this disease. Is there such a thing?

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2 replies
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gilkesl | @gilkesl | Nov 13, 2024
In reply to @tifany "Hello A diagnosis of syringomyelia was made. It was said that physical therapy could progress this..." + (show)
Profile picture for tifany @tifany

Hello
A diagnosis of syringomyelia was made. It was said that physical therapy could progress this disease. Is there such a thing?

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Have you seen a neurologist?

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tifany | @tifany | Nov 13, 2024
In reply to @tifany "Hello A diagnosis of syringomyelia was made. It was said that physical therapy could progress this..." + (show)
Profile picture for tifany @tifany

Hello
A diagnosis of syringomyelia was made. It was said that physical therapy could progress this disease. Is there such a thing?

Jump to this post

Yes. But he stated that physiotherapy can improve syringomyelia fluid.

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1 reply
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nancy82415 | @nancy82415 | Nov 17, 2024
In reply to @tifany "Yes. But he stated that physiotherapy can improve syringomyelia fluid." + (show)
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Yes. But he stated that physiotherapy can improve syringomyelia fluid.

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@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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leahbwilliams92 | @leahbwilliams92 | Jan 21, 2025

I was just diagnosed with Chiari 1 malformation with 0.7cm herniation and a syrinx. I have so many symptoms to even list.
They seem to be getting more frequent. I am waiting to hear from a neurosurgeon, but I am def nervous about decompression surgery. I am hoping to be put at ease.

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1 reply
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fridaygirl78 | @fridaygirl78 | Jan 27, 2025
In reply to @rob39 "To @Jennifer Hunter Further to my original post I wish to add my profile. I am..." + (show)
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To @Jennifer Hunter
Further to my original post I wish to add my profile. I am 83
Years old and live in Australia.
I have Poly Neuropathy and recently with a syrinx from T4 to T10, spondylosis with central canal stenosis. The neuropathy started in my toes about 15 years ago and progressed to below my knees.
For the last three years i have managed that ok. Since September 2022 it progressed rapidly to the tops of my thighs (prickling pain and itching) the pain in my feet increased to the stage that I consulted a Neurologist. I am now on 600 mg Neurontin a day. This has settled the nerve pain a little but makes me drowsy. Im slowly losing the use of my legs. The Neurologist said that the symptoms were moving too fast to be Neuropathy, so reffered my for a full spinal MRI. There is Spondylosis all down my spine with multiple nerves compressed, and a syrinx in my spinal cord from T4 to T10. I felt the syrinx explained allthe upper body pain that I have had for years that no GP could give me an answer to. The Neurologist referred me to a Surgeon for an opinion on the stenosis in the lumber area and the syrinx. The Surgeon was not interested in discussing either of these problems, he only wanted to talk about the neuropathy. I asked him about the syrinx and he waved his arm around and said " They're nothing I see them all the time" That advice cost $260 for ten minutes. I wish I had read his patient reviews beforehand I am yet to go back to the Neurologist, the Surgeons report will make interesting reading. Regards rob39

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Hello Rob39,
I am a fellow Aussie, 47 and recently diagnosed with Syringomyelia T11 - L1 6cm long and 3cm wide. I'm a public patient so haven't seen a neurosurgeon got an appointment in two weeks. I already predict they will refer me back to neurology. I have pain on lifting, housework & standing. Ive had pins and needles for years blamed on everything from my Psoriatic Arthritis, Fibromyalgia and Chronic Fatigue. How have you progressed in your diagnosis & treatment?
Thank You
FridayGirl78

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2 replies
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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jan 28, 2025
In reply to @fridaygirl78 "Hello Rob39, I am a fellow Aussie, 47 and recently diagnosed with Syringomyelia T11 - L1..." + (show)
Profile picture for fridaygirl78 @fridaygirl78

Hello Rob39,
I am a fellow Aussie, 47 and recently diagnosed with Syringomyelia T11 - L1 6cm long and 3cm wide. I'm a public patient so haven't seen a neurosurgeon got an appointment in two weeks. I already predict they will refer me back to neurology. I have pain on lifting, housework & standing. Ive had pins and needles for years blamed on everything from my Psoriatic Arthritis, Fibromyalgia and Chronic Fatigue. How have you progressed in your diagnosis & treatment?
Thank You
FridayGirl78

Jump to this post

@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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1 reply
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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jan 28, 2025
In reply to @leahbwilliams92 "I was just diagnosed with Chiari 1 malformation with 0.7cm herniation and a syrinx. I have..." + (show)
Profile picture for leahbwilliams92 @leahbwilliams92

I was just diagnosed with Chiari 1 malformation with 0.7cm herniation and a syrinx. I have so many symptoms to even list.
They seem to be getting more frequent. I am waiting to hear from a neurosurgeon, but I am def nervous about decompression surgery. I am hoping to be put at ease.

Jump to this post

@leahbwilliams92 Welcome to Connect. I can understand being nervous about any type of spine surgery. I was too before my C5/C6 fusion that was 8 years ago. I had spinal cord compression. Surgery can be different for everyone. I did not think my ACDF surgery was that bad. It didn't hurt as much as I had feared. Definitely, when I broke my ankle 4 years ago, that pain was a lot worse than my spine surgery.

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rob39 | @rob39 | Feb 2, 2025
In reply to @fridaygirl78 "Hello Rob39, I am a fellow Aussie, 47 and recently diagnosed with Syringomyelia T11 - L1..." + (show)
Profile picture for fridaygirl78 @fridaygirl78

Hello Rob39,
I am a fellow Aussie, 47 and recently diagnosed with Syringomyelia T11 - L1 6cm long and 3cm wide. I'm a public patient so haven't seen a neurosurgeon got an appointment in two weeks. I already predict they will refer me back to neurology. I have pain on lifting, housework & standing. Ive had pins and needles for years blamed on everything from my Psoriatic Arthritis, Fibromyalgia and Chronic Fatigue. How have you progressed in your diagnosis & treatment?
Thank You
FridayGirl78

Jump to this post

Hello Friday Girl78.
Since I submitted my post about my syringomyelia I have had some other health issues develop, my polyneuropathy developed quite rapidly to CIDP (please google) this has been time consuming with diagnosis procedures and now treatment, IVIG now for 9 months. Heart issues are also involved. So the syringomyelia is something that I will have to live with. Hoping you will get the help you need and wishing you all the best.. Rob39

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1 reply
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fridaygirl78 | @fridaygirl78 | Feb 2, 2025
In reply to @rob39 "Hello Friday Girl78. Since I submitted my post about my syringomyelia I have had some other..." + (show)
Profile picture for rob39 @rob39

Hello Friday Girl78.
Since I submitted my post about my syringomyelia I have had some other health issues develop, my polyneuropathy developed quite rapidly to CIDP (please google) this has been time consuming with diagnosis procedures and now treatment, IVIG now for 9 months. Heart issues are also involved. So the syringomyelia is something that I will have to live with. Hoping you will get the help you need and wishing you all the best.. Rob39

Jump to this post

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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