Living with Syringomyelia

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

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

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.

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

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

@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

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.