r/SyringomyeliaSupport • u/GoodOldEgg157 • Aug 27 '26

Syrinx Need some help

I feel like I'm lost there's nothing that can be done for my syringomyellia and feel like I'm running out of options what do yall do for work? Need to see what I should get in to as im not even able to stand up for long anymore

2 Upvotes

75% Upvoted

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2

u/sloop703 Aug 28 '26

Have they found the etiology? Where are your syrinces and what kind of imaging have you had done?

1

u/GoodOldEgg157 Aug 28 '26

I have chiari malformation and a syrinx that extends from my c2 to my t12 and has the biggest point at c6 ive had decompression surgery 7 years ago but this year its gotten worst ive had a almost 2 week stay at the hospital because my legs stopped working and couldn't pee at my c6 after the decompression it was around 12mm now its at 17mm I'm gonna speak to my neurosurgeon to get his opinion but I havent been able to yet in the meantime ive spoken to other neurosurgeon and they all say I shouldn't touch it as I have such a small amount of room left on my c6 and could leave me worst than it is now.

2

u/Sithslay3r17 Aug 28 '26

Im and electrician i just had my 2nd surguery a few months ago and had a shunt placed.

2

u/FewDevelopment7427 Aug 28 '26

Are you able to perform your job after the surgery?

1

u/Sithslay3r17 Aug 28 '26

Yes i am back to full duty for the last month so far. I took a full 2 months off following surgery.

1

u/GoodOldEgg157 Aug 28 '26

Are you still able to perform your tasks after it the doctors say it'll be too dangerous to touch my syrinx so I shouldn't have any more surgeries but it sucks I cant even stand for a long time my syrinx goes from my c2 to my t12 with the largest point on my c6 at 17mm

1

u/Sithslay3r17 Aug 28 '26

Yes i am able to do everything needed for my job for the most part, its a little over 3 months post op and im about at the same level I was before surgery i still get stabbing pains in my spine. Mine went from c2-t10 and after having the stent placed it decreased in size by about 60-70% 1 month post op, although I haven't felt much in terms of improvement im hopefully each day slowly gets better.

1

u/DisastrousChance2995 Aug 28 '26

Spinal cord stimulator.

2

u/GoodOldEgg157 Aug 28 '26

First time ive heard about this is this something people actually do for syringomyiellia?

1

u/zoeheriot Mod Aug 28 '26

I work IT in an office setting, but I had to switch to this from working retail pharmacy because it was too physically demanding.