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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Brain & Nervous System
/ Syringomyelia Support Group

11 year old son newly diagnosed with Syringomyelia

Irish6425
Irish6425

My son recently had a thoracic & lumbar MRI done by his rheumatologist looking for the cause of ongoing back & leg pain. We are waiting to hear from our doctor, but imagine we will be referred to a neurosurgeon. They have marked it as hydrosyringomelia, is this the same thing as syringomyelia? All information I have found points to them being the same thing. Below is what the MRI said: Any advice, or thoughts, would be greatly appreciated. All we know at this point is what we have Googled, and that is scary. 


Hydrosyringomyelia is present throughout the thoracic cord and extending
into the partially visualized cervical cord, measuring up to 4 mm in
greatest AP at the level of T7. No Chiari I malformation is noted on the
T2 sagittal counting sequence. A contrast-enhanced study is recommended to
exclude a causative underlying lesion.


A linear, fusiform fluid bright T2 signal is noted centrally within the
thoracic spinal cord extending from at least the T1 level superiorly
through T11. There appears to also be involvement of the cervical cord as
noted on sagittal T2 counting sequence. The collection is most prominent
at the T6-T9 levels and measures up to 4 mm in greatest AP diameter at the
level of T7. No additional abnormal cord signal. No Chiari I malformation
is noted on the T2 sagittal counting sequence.

Note significant disc degeneration. No significant spinal canal stenosis
or neural foraminal narrowing at any level.


 

ash619
ash619
I think that is the same thing as syringomyelia. Prayers to your son. Make sure to write all sorts of questions you have for the neurosurgeon. I went into the neurosurgeons office by myself and was too scared at what he had to tell me to even think of what questions I had. It is a rare disease so not a whole lot of helpful information is out there. I was just diagnosed after what I thought was a minor car accident due to someone's negligence! I haven't had a whole lot of symptoms but my arms are starting the pain and weakness portion of it all and I do get the headaches which turn into debilitating migraines. It is a scary disease because there is such a variety of symptoms and they usually come and go day to day. Keep notes of what pains he has and if anything alleviates the pain or makes it any worse. This is all helpful for the doctor and you can even call the nurse and let her know if any new symptoms come about. The best advice I was given is to keep active like running and walking and not to lift anything heavy. Mine is in my cervical and top of my thoracic so it could be a little different than your son's diagnosis. Keep strong for him and although this is a rare disease, we are all in this together!
Page90
Page90
What ash said above about writing down questions is excellent advice, I wish I had written down my questions for the neurosurgeon about syringomyelia. I also found an app that helps track pain, you answer questions like where it's located, the type of pain how long it's been going on, what helps it and what doesnt. And it gives you options to select so it makes it super easy. It's called manage my pain life. After you have a few days recorded it gives you charts, reports and summaries about the pain that make it easy to show the doctor. I'm definitely going to take it to my next doctors appointment so that I'm not struggling to remember where/when/why my leg and arm hurt. It could be helpful for you with your son so you don't have to write down what he's feeling to relay to the neurologist.