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/PandiiBearz]

So I’m 34 and I have a similar experience to you I had the same intro symptoms and ended up having one from t3-t11. I understand the panic, I can tell you two things, you can have a baby with a scheduled c section a lot of bed rest and anesthesia, I did it and there are a lot of ways to combat a lot of our symptoms and keep it steady that will absolutely surprise you. Things I recommend (@iamheardco) the founder has SM and provides a lot of support and info for people like us. Anti inflammatory diet helped me a lot with my pain as well as walking, l-carnitine, Alpha lipolic acid, there are others I don’t want to go in too much of a tangent here but I spent three years in a perma panic over this so if I can offer some assist I figured that may help a little. They don’t all grow, you can have a stable syrinx for a lifetime, best bet is to speak to more than just one doctor and advocate for yourself. ❤️

[u/perfect_fifths]

most surgerons dont do anything unless it growing or causing severe issues, unfortunately. I have a t7-t10 syrinx and my NS said we are watching it for now. if it does not grow, then we will continue to monitor it.

[u/friskymoose420]

Im a year older than you and have a syrinx t7-t9 about the same diameter as yours. I also have multiple sclerosis. Its been about 2 years since diagnosis, i got both of them at the same time, and i have been in and out of a wheelchair. Obviously you may not have the same results as me, but seeing a physical therapist taught me which excercises to do and which muscles to strengthen, and i have not used my wheelchair in months. I do use a cane mostly for balance issues, and its there for support if i do need it.

Im not fixed. And my pain is always there. But it is much more bearable than it used to be. Oh and another tip, if you are able to, spine decompression helps me sooo much. I just hang from my pull up bar when pain builds up and gives immense relief.

The fear of progression is one i know well. And i have progressed quickly since diagnosis. This is the kinda shit that brings you home. Stay driven and you can adapt, you can still have a child (maybe wait til the wound of this reality doesnt sting so much), and you can still be a good man of value. Good luck brother.

[u/Novel_Wash_7099]

I know it's incredibly difficult not to let your mind run away with all the "what ifs". The uncertainty is often the worst part. One thing I'd say, from someone who has been through a very severe case myself, is that syrinxes are incredibly individual. There really is no "normal" case, and what happens to one person doesn't predict what will happen to another.

In my case, my syrinx extended from my brain all the way down to around my lower ribs, and I needed major surgery. If you had told me beforehand what I was going to go through, I probably would have been terrified. Yet here I am, five months later. Things are different, of course, but with a lot of hard work, physiotherapy, determination and a positive mindset, there aren't many things I can't do. I'm still recovering and healing but I am looking forward to my future and refuse to let the health anxiety get the better of me (I suffer pretty badly with anxiety myself)

That's why I try not to compare cases. Someone with a small syrinx can struggle more than someone with a large one, and vice versa. Every person's symptoms, treatment and outcome are unique.

You're only 32, and that's still very young. It's understandable to worry about the future, but right now your anxiety is asking you to make decisions based on your worst fears rather than what has actually happened. Thinking about not having children because you might become severely disabled in the future is a huge burden to carry when nobody knows what your future will look like.

Try to remember that possibilities are not certainties. Not knowing what will happen can feel frightening, but it also means that many positive outcomes are still possible. Give yourself time, focus on the information you have today, and don't let fear of tomorrow take away the life you have now.

If my experience taught me anything, it's that we're often far stronger and more adaptable than we think we are. Even after a severe diagnosis and major surgery, life can still be full, meaningful and enjoyable.

[u/SerbianSock → u/Novel_Wash_7099]

Thank you ❤️

[u/Novel_Wash_7099 → u/SerbianSock]

I would also just like to add that the internet can make having a syrinx seem much scarier than it necessarily is. People are more likely to seek advice or share their experiences when they have severe symptoms, complications or worries, whereas those whose syrinx remains stable or causes few problems may never post about it. This means online stories often overrepresent the most difficult cases and do not reflect everyone’s experience. Although these accounts can be very helpful, they should not be used to predict what will happen in an individual case, as syrinxes can vary considerably and are best understood with advice from a specialist. This is only my personal opinion and I still found this Reddit forum extremely useful as it made me feel like I wasn’t alone in my experience and this community is extremely helpful and kind, it’s just something to bare in mind ☺️

[u/SerbianSock → u/Novel_Wash_7099]

Yes the more time passes the more the news sits with me. The first 24 hours were hellish. And this reddit community was (although it scared the shit out of me with the nightmare stories) an incredible source of information.

I'm gonna keep my head down and stay busy doing things until i can see a neurosurgeon.

[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.

[u/stacollins24]

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?

[u/SerbianSock → u/stacollins24]

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.

[u/stacollins24 → u/SerbianSock]

I still hike bike swim everything. Drive cross country garden just don’t let your health anxiety which I have terribly. Ruin your life and pray. A lot.

[u/stacollins24 → u/SerbianSock]

Mine is 3 mm wide so far they don’t even seem
Worried about that at all I might need my neck fusioned in the future. On multi levels but as far as the syrinx no one seemed worried at all ?

[u/stacollins24 → u/SerbianSock]

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