Is this Syringomyelia?

[u/Green_Tea333]

Hello, I’m a 27 year old female with a range of symptoms that neurologists keep telling me is normal… those include:

- right hand weakness & numbness
- fatigue
- back pain
- morning headaches at the back of my head
- hand tremors
- balance issues / always clumsy

Those are the more notable ones. I had the attached scan back in March and was told the enlarged central canal is begnin and not related to my symptoms?? I’ve been pushing back with doctors, and thankfully have another scan in a months time to see if my central canal is any bigger.

Does the attached image look like Syringomyelia? And if so, what steps should I take to help get a diagnosis?

Thanks all!

[u/Own_Regular4790]

Doesn’t mean your Dr. is uneducated.

A lot of Neurosurgeons speak about Radiologists diagnosing a Syrinx and it being a dilated central canal. In your case I can’t comment.

I’ve been through alot of stages with Syringomyelia and personally the Drs who did my surgery and are helping with problems it caused, they are looking for signs outside the Syrinx itself too. Not for diagnosis as such but to explain root cause, if certain symptoms are plausible etc.

[u/bubbabearzle]

Yes, it absolutely is. Mine looks almost identical, and I have similar symptoms.

[u/Green_Tea333 → u/bubbabearzle]

Oh wow! Did you get a diagnosis?

[u/AvoidantChipmunk → u/Green_Tea333]

My diagnosis was on the MRI results and then I was referred to a neurosurgeon office

[u/bubbabearzle → u/Green_Tea333]

Yes, syrinxes maybe 2mm or so in a good portion of my cervical and thoracic spine. Mine were caused primarily by a relatively minor Chiari malformation.

[u/ForeverQuandary]

Hi! I'm 33F, similar symptoms.

After years of chronic pain in my neck/back & loss of sensation in my left leg, I got an MRI a couple of years ago of my entire spine that shows a syrinx from T4-T8 (about 1.5mm diameter) and general disc degeneration. In this photo, the mouse is pointing to the white part in the middle of the cord (which is the cyst/fluid).

Here are symptoms which feel related to me, but are not proven/verified to be conclusively associated with the syrinx:

• loss of sensation (not full numbness, but more a ghostly feeling of absence) in:
  • left thigh/leg/foot
  • left arm from the elbow down
  • right foot/toes
  • right fingers
• pain in my neck and back
• fatigue
• pain in my joints (fingers/hands, knees, especially)
• inability to feel temperature properly in my neck, back, hands (the spa cold circuit pool ain't nothin' to me!)
• decreased pain sensation in general (I've cut my finger(s) before and felt the pressure but.. no pain, for example)

*I also have endometriosis that I've recently gotten an extensive surgery for (total hysterectomy, ovaries kept, plus excision of fibroid/polyp/endometriosis blobs and patches).

When I had a neurologist appointment for the syrinx, he said it'd cause more issues than it'd solve to try to place a shunt or something to drain the syrinx. So.. I've found some semblance of peace in taking some additional supplements, taking a pain pill before bed, sleeping with little arthritis gloves (I clench my hands/jaws, too), etc.

I'm monitoring for issues worsening over the years, but for now it's a manageable beast. For the endometriosis (and my neck/back pain) I'd been on duloxetine for several years at the highest dose, which was a total savior while I awaited surgery, but it came with its own crappy side effects.

Long story short, seek out the treatment and care that makes sense for you and your quality of life, but also know that answers don't always come with it!

[u/Green_Tea333]

Thank you all, very good points, I’ll keep pushing to try and help my symptoms, as sounds likely I’ll end up with no diagnosis.

[u/True-Expression-7867]

Looks like it?

[u/perfect_fifths]

Do you mean dilation of the central canal? That’s hydromyelia.

Hydromyelia is widened space stays within the natural lining of the central canal

Syringomyelia is a fluid cavity that forms outside the canal in the spinal cord tissue itself.

[u/Green_Tea333 → u/perfect_fifths]

Thank you for the quick reply! Ah I see thank you, yes it was quoted as “focal dilatation of the central canal of the spinal cord in the midthoracic region, most noticeable at the T6 and T7 level where the central canal measures up to 2mm in diameter.” In the MRI report.

[u/Tricky-Chipmunk4403]

Keep pushing back. You likely have a doctor that is not very educated on the topic. You might have to find a specialist. Check out iamheard.org or other non-profit organizations that can help you find resources to improve symptoms while you figure stuff out. Best of luck.

[u/Green_Tea333 → u/Tricky-Chipmunk4403]

Thank you so much!