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.
Hey there, I am new to this group. I am a 26 year old single mom of a 3 year and a 1 year old. I am in Alberta, Canada. In September 2011 I was in a serious car accident that I should have died in. I have been in extreme pain in my mid andlower back ever since. In October 2016 my pain got even worse and I was getting numbness and tingling in my legs. My doctor diagnosed me with sciatica. She said if things didnt get any better over thespan of a few months we would consider an MRI. I begged for the MRI since my initial accident. On December 1, 2016 I was tboned on the driver side and lost all feeling in my left leg temporarily. Feeling still hasn't returned to normal. But after that accident my doctor finally agreed it was time for an MRIso she put me on the waiting list. I had the MRI of my lumbar spine on April 26th. The day after the radiologist called me and said there were some concerns with my scan and they needed me to come back in to do my cervical and thoracic spine as well a contrast scan to check blood flow to my spinal cord. The second I got that phone call I went into panic mode. The next scan was scheduled for May 2. On May 5 my doctors office called and said they needed me to come in cause they found something. I couldnt get in until May 15th. 10 days to panic. So this past Monday I went in and was told I have 3 small syrinxes. First one is 2mm wide and is at my T5. Second is 2.5mm wide and is from T8-T10. The third is also 2.5mm wide and starts halfway through T11and goes to the bottom of T12. My doctor informed me she wanted a brain MRI which I'm still waiting to find out when it will be and that I would have to see a neurosurgeon. I was scared beyond belief but so happy that they finally found out the cause of this extreme pain I've been in for damn near 6 years now. Today my doctor calls and tells me she has good news. She says she spoke to the neurosurgeon and he doesn't believe that the syringomyelia is the cause of my problems and he believes that I've had it since birth. from all the research I've done since I got that phone call it seems like its a pretty common thing for neurosurgeons to brush small syrinxes off like they are nothing. I am only 26, I shouldn't have to be in this much pain all the time. My kids suffer because I can't do all the things I wish I could. Is there anyway to make a neurosurgeon actually sit down and talk to me. This guy won't even give me the time of day and I don't know where to start. I just know that I want this taken care of instead of not being able to move. I have had a headache every day since the accident, back pain, can't even get out of bed without crying. In the last 6 weeks I've begin to experience extreme pain and pressure in my neck, shoulders and the middle of my back, numbness in my left leg, constant tingling in my hands. It can't be a coincidence. :(
I can't believe they waited so long to give you an MRI! Are you on any medications? I'm waiting to see my neurologist again to discuss my worsening symptoms. If you read my story, my symptoms were pretty minimal until two months ago. I don't know what caused mine. I do know I hurt my back sleeping in a weird position shortly before my symptoms started 4 1/2 years ago, but can you imagine dealing with this all because of sleeping?? What a cruel joke.
The hardest part is having young kids, hey? I try to tell myself people are diagnosed with horrible diseases all the time, but it's hard when you have little kids who need you around. I tell myself so long as I can last till they're adults without being too disabled by this... but truely I just wish I wasn't dealing with it ever. I've read some people who have it 30 years without it impacting their life much. I had hoped I would be one of those lucky people.
I would like to find out if there is a doctor in Canada up on the current research and surgery options about this.
When I go to the neurologist next, I am printing a ton of research from scientific journals, highlighting and asking questions, and making him read them! My family doctor told me if he doesn't listen she will refer me to a different neurologist or I will demand a referral to the neurosurgeon and make HIM READ my scientific research.
Unfortunately this isn't the type of disease we can just take the doctors at face value. We are going to have to fight. Which exhausts me just thinking about. It shouldn't be necessary. I'm a quiet introvert and it is not in my nature.
I hope you have family to support you?