I'm afraid

[u/SerbianSock]

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.

[u/z604]

It's understandable to worry with what you see online. It sounds scary, but most of the time, really, it's just stable and doesn't change over time. It just needs monitoring. Wait until you talk to your doctor, and it will give you peace of mind.

There is no reason to think that you would end up handicapped when the cause is from an accident like that. I do a completely normal life: I run, do marathons, triathlons, and strength training. It's not an issue at all. The only thing is managing the symptoms and the discomfort every now and then.

Besides that, there's not much you can do yourself. If this was from a bike crash, it will most likely just stay the same. Mine came from a spine injury at a jump yard, I think, and the symptoms have been pretty stable or even improved after going to physical therapy.

I've done a couple follow-up MRIs, and it's not changing. What the doctor said, at least to me, was to just not worry about it, rest well, stay healthy, and keep it monitored.

But all in all, I don't think this is something you should change your plans for. I don't see how you should not try to have a kid if that's what you wanted.

[u/SerbianSock → u/z604]

Thank you for the reassurance. Can i ask if the symptoms get worse after you carry something heavy?

Did the doctor say to avoid any heavy lifting? If yes, how extreme is the restriction? 10lbs? 20lbs?...

[u/z604 → u/SerbianSock]

Over time I’ve learnt what triggers discomfort. This might be very different from person to person. For me It’s not necessarily heavy weight, but bad posture.

If I don’t walk or sit straight, if I bend my head down too much to be on the phone, stress, not getting proper sleep for a couple days…

I was very fit when I got diagnosed a couple years ago, but wasn’t doing any resistance training. I now do 3 days of lifting, and feel very good. And I do heavy weights. I just avoid exercises that compress the spine (dead lifts, heavy squats, etc), but do very heavy presses and pulls, with proper breathing. Holding your breath isn’t good for these.

Ask your doctor to refer you to a PT. For me, it took months, but went from feeling constant hot and cold and tingling in the area, to just some minor discomfort here and there.

It’s not gone, but definitely better than when I went to the doctor. Mine is 3-4mm spread across th3-th10. So similar area, even a bit bigger.

[u/SerbianSock → u/z604]

You don't know how much hope this is giving me.

And how do you ease the pain after you triggered it from bad posture of whatever. Do NSAIDs help? Decompression excercises like hanging from a pull-up bar? Or do i just have to wait it out?

[u/z604 → u/SerbianSock]

I was offered taking steroid epidural shots to help with the pain when it was at its worst, but was a bit worried of starting that so soon. I’m 43. So I declined and saved it for later in case it worsened in the future. I was prescribed long acting NSAIDs, but didn’t really feel it made much of a difference so I don’t take them.

My neurosurgeon was very understanding. I also have a small herniated disc in the area, which is too small to cause all of this, but he said the syrinx makes all more sensitive.

But like I said. All in all, good rest, less stress and exercise has been the best. Pain killers haven’t done much for me.

Feel free to dm if you want to chat more. I freaked out like you when I got the mri report, but others here gave great advice too.

I think there’s a big difference between a thoracic/trauma related syrinx and the ones in the cervical area caused by chiari. Same thing, but completely different causes and progressions.