Syringomyelia Support Group

Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.

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Tom.w 01/09/2018

Hi,

Im a 33yr old male. Just over a year ago I felt like I was coming down with an illness and felt run down like my body was trying to fight something which progressed to symptoms of vertigo which my doctor gave to tablets for. This was followed by a feeling of being detached and my mental clarity hindered and just not feeling my self at all. This was all happened along with a neck ache and pressure feeling around my head and tingling in my left had and arm and left side of my face and left side headache which feels like it's nerve/muscular. I also noticed 1 pupil bigger that the other but doc says this may have been from birth!? Any how I was sent to see a neurologist for an MRI of the brain and cervical spine. 4 weeks later i was told i have a syrinx at point of C6-C7 of my spine so this could be the reason for the tingling in my hand but not the cause for any of my other symptoms.

8 months later I still suffer from all of the above symptoms plus now a twitch of my left eye lid which comes and goes along with waking in the night with pins and needles in both hands. I also feel spaced out alot and find it hard to engage with people which was never a problem a year ago and drives me crazy. Only info was i was Told to reduced lifting Heavy weights but having 2 young boys (2 & 4 ) who wants daddy to carry them is tough to turn down.

Does anyone else suffer similar symptoms? If the neurologist doesn't think the syrinx is the cause then what is!?

JulianneM 01/09/2018

Hi Tom I have the same as you and was diagnosed. My neurologist confirms all the symptoms are to do with my syrinx . I was being monitored but went on Monday as my daily pain and management mentally are affected every day. I will be having an op in the next 3 months after my daughter's wedding. Can I ask how long and how do you manage and how often do you get MRI and meetings with your Neuro

Tom.w 01/10/2018

Hi Julianne, sorry to hear that you are going through the same as me. Goes to show how little is known about this condition as many neurologists have different opinions. I hope that your operation is a success and you make a speedy recovery. I have had 2 meetings with my Neuro over the year period and 1 MRI so far which was around 8 months ago but have another MRI this Sunday coming. I also have an appointment to see a neurosurgeon in may to discuss options and hopefully will be able to shed light on all these symptoms I have been having as he specialises in syringomyelia, where as i think the Neurologist I have been seeing doesnt have a clue about this cronic illness as it's a rare thing to have.

JulianneM 01/17/2018

Hi Tom thank you for your reply. But late replying with a lot going on. I hope you are ok and how did you get on when you went on Sunday. I have had a good couple of days this week and always try to be positive. I am 49 and have two grand children which I do pick up and it is difficult when your aware that the lifting is a problem. You feel like a time bomb and have all these emotions some times. I gave up my flying career because I was scared of pulling the heavy doors and trolleys. I also try not to overload my husband but you feel like your a burden with the symptoms. I hide a lot of it and try and get on daily. I do work as an admin officer and keeps me busy. I know with this horrible disease it is silent and rare and it is hard for people to understand how you feel emotionally and physically but I did feel a lot better this time that I saw my Neuro. I do hope you get some better understanding and information. Let me know how you go tom
Thanks julieanne

Tom.w 01/21/2018

Hi Julianne, Sunday went well but won't get the results until I see my neurosurgeon in May to see if it has got any worse. I also keep slot back from my wife because I don't want to worry her. We have a young family and hate having this hanging over our heads and worry what the future holds especially when I comes to work. Apart from all this like yourself I do try and stay positive and try to put it to the back of my mind which can be difficult when suffering symptoms. I update if and when I get any useful information. Thanks for your support and hope you have plenty of worry and painfree days.

Vesves 02/03/2018

I feel so sorry for all of us. I just posted what's going on with me. C5 to T11 is how big mine is. I know what you both have is what I'm going through. My pain clinic dr. Did research and there are only 2 dr. In mi. That will deal with this. call around ookir look and find a neurosurgeon that does deal with this. I'll know more on mine at the end of Feb. And will keep updates on what he says.

JulianneM 05/12/2018

HI Tom. How are you. Any news this month from your Neuro. I am just back home from hospital after having a magnum foreman decompression. I had this done on Tuesday. Resting up now and staying positive. Follow up in 10 weeks with MRI and Neuro. Let me know how you are going. I didn't realise you had replied to my last post till I checked. Julie anne

AdrienneMC 11/21/2020

Hi there, looking up this stuff cuz I'm facing
Love to hear how each of you are doing, along with any insight and recommendations~
Blessings

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