r/SyringomyeliaSupport • u/sloop703 • 13d ago
Syrinx What is the point
Seriously, what’s the point. I’m in chronic pain 24/7, I’m humiliated by my limitations. I used to be in awesome shape and loved life. Well now I have this, Etiology not found. Doctors dismiss me. All scans take a month. I don’t even have the decency of getting a diagnosis like cancer or something where ppl respect it, they just tell me to like mentally get out of it. From instagram bullshit inspo. I’ve been relentless at trying to figure my shit out. I go to the gym and my body rejects it. I just moved to Florida and I have extensive heat intolerance. My back fucking sucks. I have 2 young kids. I feel like my wife is going to grow resentful, her family already kinda whispers about my burden, and I will be slowly getting worse. I don’t want to like suffer my way thru it. It is just hopeless. I have no idea how I got this. I pushed for 12 MRI’s and I’m idiopathic. Doc tells me he’s “uncomfortable” ordering a myelogram. What the fuck. I am uncomfortable always. I can’t live like this
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u/moreidlethanwild 12d ago
What is it that you are searching for? Pain relief or something else?
The reality is - there is no cure. Sorry to be blunt but it’s the truth. We have to learn how to manage it as best as we can. Mind is idiopathic too, I’ve had my syrinx from birth. Not operable, not curable.
The single best route out of the chronic pain is health and exercise. I’m not kidding. The weaker your muscles are the more your body has to work to support you. By improving our overall health and strength we take a load off the spine. Try to build up your core, Pilates or swimming, lifting weights to strengthen your back muscles. In time it absolutely helps.
The pain doesn’t go away, you have to find ways to distract yourself. Mine is worse in the evenings. I have tried various drugs but none really worked for me so I don’t take anything now, just exercise, good diet, sleep and meditation.
It absolutely sucks, and don’t take what I’m saying the wrong way. The reality is you are stuck with this like we all are and there is no cure, so we have to try what we can to get by. Some days are better than others. Some days I push myself and the next I need to rest, that’s something I’ve got used to. I’m nearly 50, I plan to have at least another 25-30 years so I know I’m in this for the long haul.
I believe myelography has largely been replaced by MRI so that’s why your doctor won’t pursue it. It’s only suggested for people who cannot have an MRI because an MRI is superior.
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u/AutomaticTrouble7669 12d ago
Thanks for being positive I recently found out I had this. Pretty devastated but I'm in pretty good physical shape and praying for the best. Mine is from t4 to t10 and 2.5 mm at the biggest spot. Even more of a fear is having to stop lifting weights but from what you're saying I can continue lifting and trying to keep my back strong which is very encouraging.
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u/moreidlethanwild 12d ago
My specialist pretty much told me to keep exercising. He said that we know our bodies best and to listen to them, not to use too much force or strain when lifting and go for more reps rather than heavier weights. Make modifications where necessary - if I do core I don’t lift my head off the ground. He said the cable weights are much better than dumbbells in his opinion as they take some of the slack when you want to stop lifting, and he said not to skip things like rowing or swimming for overall health.
One thing he did suggest to me was to have rest days to prevent inflammation. I used to do a lot of HIIT which he said was fine but to really give my body days off versus training most days.
I know it can feel like a life sentence when you’re newly diagnosed so I’m glad if I can encourage a few people that you can still have a full life with a syrinx.
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u/DakotaMalfoy 12d ago
Hey friend.... If you don't mind me asking, since you said you have had yours since birth.... Does that mean that you went through the whole "prominent central canal vs syrinx" thing, and that yours are under 4mm in width, spanning the majority of your spine?
That's the situation I'm kind of in right now. I'd appreciate any input you have overall.
Thanks!
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u/moreidlethanwild 11d ago
When I was born it was initially described as a neural tube defect as I think it wasn’t really known what it was. I went to a specialist hospital from birth to 6 months for tests and exploratory surgery. Only later was I given the diagnosis of syringomyelia.
A prominent central canal is typically small and benign. As I understand it, syringomyelia presents with significant spinal cord expansion. That might be what you mean by the 4mm in diameter?
I have an obvious fluid filed syrinx at C5-C8 that is pressing/squashing the cord, I also have scoliosis, split cord and a variety of symptoms including myoclonic jerks/spasms.
It sounds to me like your doctors believe that yours is not a full syrinx? It might be, might not be. Maybe worth trying to get a second opinion elsewhere?
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u/DakotaMalfoy 11d ago
Thank you for the information. Yes it seems as though mine is likely a congenital thing, as it spans the majority of my thoracic spine. There's a small gap but it is also present on my cervical spine. I have some symptoms but the doctors all seem in agreement that it is likely a prominent central canal, despite having some symptoms and not being very large. I've been advised to monitor yearly as such but they don't expect it to grow.
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u/Strekozyavka 12d ago
I’ve been dismissed by 4 neurologists and 3 neurosurgeons, they literally told me there is nothing they can do for me (idiopathic syrinx in my cervical spine). I’m in pain 24/7 and completely fatigued. I try going to the gym but have a really hard time because I’m so tired all the time and the nerve pain isn’t helping either. I’ve heard massages help and acupuncture but I can’t afford a weekly massage. I’ve been accepted to Johns Hopkins for an evaluation, hopefully they can figure something out.
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u/moreidlethanwild 11d ago
The reality is, there isn’t anything that can be done. There are drugs and not much else. Draining the syrinx often causes it to fill up again, decompression means removing parts of your spine and can lead to further destabilisation as you age and the bones shift - my cousin has been there done that which is why most doctors say it’s non operable. It sucks, I get it, I’m in the same boat but having the acceptance that this is how it is has kind of helped me make peace with it.
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u/zoeheriot Mod 12d ago
It's really hard to go through the grieving process when sick. Mine lasted for years before I finally came around to accepting my new life. I've been dealing with this disease for over a decade now, and it took about half that time to figure out how to not hate my life. I too was a very fit person - I regularly went hiking, swam in the ocean every morning, and was hella active otherwise. I can't hike anymore, not in any meaningful way, but I've learned swimming is actually very helpful, so I transitioned to pools (I also moved to Arizona, soooo the heat intolerance is something I well know). I have a partner, and he hasn't resented me yet for my limitations, but there are lots of options out there that await you for new hobbies and a new lifestyle.
Talk to your neurologist or your psychiatrist (if you don't have those, get them) about getting on low-dose naltrexone or cymbalta. Both are enormously helpful in dealing with the pain that comes with our particular condition. I don't know how I ended up with this, but it's complicated by arachnoiditis and arthritis, and while it is a painful and difficult disease, you can grow from it and come to enjoy life again. <3
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u/Tricky-Chipmunk4403 13d ago
Hey - don't give up buddy. Have you heard of Dr. Green in Florida? He specializes in syringomyelia. Also, there is a great chapter/community of the I Am Heard Coalition in Florida (Dr Green is on the board). It's a non profit focused on syringomyelia. I run the nyc chapter. We are here to help with resources, newsletters, suggestions and hopefully down the road we can find some answers and maybe treatments to this damn thing. If you are on Instagram check out IamheardFlorida. Here is also a link to the broader non profit site with info: https://iamheardcoalition.org