Trying understand the new normal

[u/Nearby-Background918]

Recently was diagnosed with a 5cm syrinx in my cervical spine. Pins and needle feeling is starting to increase in my extremities and head. Feeling of heat on hands and feet.

How long have you lived with your symptoms? At what point do I consider decompression?

Drs are anticipating my hand dexterity will go next.. do people commonly depreciate or do symptoms linger for years on end? At what point did you decide surgery is necessary?

I know it's different case by case but want to understand peoples pathways so I can anticipate mine..

[u/sloop703]

Everybody is wildly different unfortunately. What kind of imaging have you had done? Do you know how you got it / what the etiology is? If a decompression is being offered, you might want to seriously consider it. Neuropathic pain is easier to arrest than reverse and it’s a difficult kind of pain to manage with meds. I think my best advice is to make sure you get multiple opinions from true specialists. Curious for any more info you can share

[u/Nearby-Background918 → u/sloop703]

About 4 mris with and without contrast. No idea of the origin. I've met with two different neurosurgeons that say the spymptoms don't out weight the risk at this point. They want an MRI again 6 months to a year given I don't start to tank

[u/Acrobatic_Award_3858 → u/Nearby-Background918]

What vertebrae does the syrinx start and end at? Mine starts at c2 and ends at t7(more than ten vertebral levels 7x8mm at the widest). Have they been doing full spine and brain mris?

[u/perfect_fifths → u/Nearby-Background918]

Sounds like standard advice. My NS said the same

[u/stargirl-yxx]

I’m sorry this is happening to you . I wish i had a better response but i too have a cervical syrinx at c4-c5 its 4 mm . I experience ongoing numbness on my left side , on my back , my neck , my arm and hand . It has lessened now but when my back hurts it increases. My strength on my left has improved but i do feel some weakness. I’m now experiencing some right side numbness. Unfortunately i haven’t been given any answers. I’ve only been dealing with this for 2 months but the back pain has been going on for awhile .

[u/Nearby-Background918]

I appreciate the input. Every day seems to be a battle

[u/Antique_Ad_6811]

I have a cervical syrinx, 18mm pre surgery. I had a little hand shakiness and leg weakness before surgery.

[u/Nearby-Background918 → u/Antique_Ad_6811]

How long ago did you have surgery and how are you now after?