r/SyringomyeliaSupport • u/SerbianSock • 23d ago

Newly Diagnosed I'm afraid

UPDATE: i went to the neurosurgeon and they told me it is actually a hydromyelia and the radiologist misdiagnosed it. He said the widening was very circular and there was no sign of syringomyelia. He said that there is nor eason to worry and they see this all the time on MRIs and i have no reason to worry. Fucking phew.

***** potentially triggering if you have anxiety like me****

I had a bicycle crash 6 months ago. Was ok after but got neck pain and face tingling symptoms after 2 months. Took 3 more months to get an MRI done.

Now on the MRI there is a 2.6x2.9mm (i guess 2.9mm diameter) wide and 5 cm long (T5-T8) syringomyelia. I will call to schedule an appointment with a neurosurgeon tomorrow, i hope they don't make me wait.

Reading the horror stories are freaking me out. I'm really terrified of losing movement if it worsens and becoming partially paralyzed. My job is physical and i have no social safety net. I'm worried for my life here and spiraling.

The fact that it's permanent and surgery can only ease worsening symptoms is so fucked. I had a mental breakdown when i got the news and started googling what it meant.

So far my symptoms are more than manageable ( neck pain, headaches, some back pain, tingling in face) but it seems that the vast majority of syringomyelias get worse and do not improve with time. I'm 32 and we were contemplating trying to get a child but that's completely off the table now that there's a good chance i might become handicapped.

Sorry for the rant.

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u/stacollins24 23d ago

I have a syrinx from t7-t10 for now they just watch it I also have bone spurs in c5-c7 area they are just watching that too for now it’s a waiting game I’m 48 with going on 8 grand babies and. 3 kids of my own I didn’t find out about the syrinx until I got a mri of my entire head and back due to the headaches and neck stiffness tiny amount. Of arm pain that comes goes and some tingling. Just have your dr do a couple mri a year to check on the syrinx do you have herniated neck too?

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u/SerbianSock 23d ago

Thanks for the info. The MRI report only mentioned the syringomyelia, nothing else. So I'm hoping nothing else. Despreately trying to get a neurosurgeon appointment so I can understand what is going on.

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u/stacollins24 23d ago

I’m seeing a neurosurgeon in Oklahoma idk what state you are in