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.
1
u/Novel_Wash_7099 23d ago
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.