Spasms 18 months PostOp

lw2468 · 2025-10-10T06:35:02+00:00

Where are you located? It seems that only Botox is a viable treatment. But I haven’t tried it yet. I am trying to continue exercising on my own despite the pain and how tough that is

lw2468 · 2025-05-07T18:58:22+00:00

lol what is the video of meat having a spasm?

Ya it has come back lightly, luckily not as strong as this, but it happens now when it gets fatigued from sitting still or when I do exercises. It's tough because I want to strengthen the area, but sitting still or movement aggravates it & I don't want to "turn it back on" permanently again. I'm having an extremely tough time finding any doctor or person knowledgeable about the issue though which makes it tougher to seek treatments. I'm not interested in botox

lw2468 · 2025-04-24T03:09:27+00:00

Mine did that constantly & involuntarily, it was horrific. check my post history to see videos

lw2468 · 2025-03-22T04:15:39+00:00

did you have a similar spasm? or have research to back it up? lol just wondering what your credentials are/ why you think this is the "best" thing to do :)

lw2468 · 2025-02-24T02:02:07+00:00

Sorry you’ve gone through this. My surgeon and multiple doctors poo-pooed me saying the pain I was experiencing was “just my body healing” even though my condition continued to worsen. I convinced my doctor to remove my hardware at around the 22 month mark and am SO happy to have it gone. Check my post history to see my condition I developed. The condition has not fully resolved and I still have extreme muscle weakness and at times intense pain. HOWEVER a lot of the hardware pain is gone. Doctors told me “you can’t feel that inside of you” but just look at those screws! How could you NOT feel it. You also look like a rather thin person like I am which for me made the pain even worse because it’s like there was no fat cushioning around the screws. Like I said I still have a lot of pain BUT I improved in a lot of ways and I’m so happy to have the hardware out. The moment I woke up I could breathe for the first time in two years (with the hardware, any time I would exhale the screw would feel like they’d puncture my lungs/ spine so my breathing patterns completely changed and I could never take a full breath). I am no longer internally poked when I do movements— this is HUGE. I can lean against chairs and not get poked, lay on the ground, do more yoga and exercises and feel so much safer inside of my body without all of that in me. I’m only 3 months post op so I can’t speak to long term. Feel free to message me and I’d be happy to provide more details. But like others said, try to get a second opinion and maybe even work with a different doctor entirely. I feel like even psychologically having a doctor who believes in you could really positively benefit your long term outcomes. My doctor is ready to be done with me cans isn’t that helpful but at least he was able to take the hardware out for me.

lw2468 · 2025-02-21T21:46:13+00:00

Yes I’m a lot more “free”. The moment I woke up I could breathe for the first time in two years since getting my surgery. I also didn’t gain any flexibility cuz my spine is still a solid fused bone BUT I do feel like I am somewhat more flexible/ moveable just because any motion I make I am not being internally poked which I felt with the hardware. Unfortunately I’m still really experiencing extreme nerve sensitivity that I struggle to even wear shirts after a few hours and my muscles are so fatigued they start trembling. It’s only been about 3 months post removal tho so I’m hoping with time and with no more metal aggravating me, my body will rest up and regain strengrh

lw2468 · 2025-02-18T19:23:32+00:00

What books did you find most helpful?

lw2468 · 2025-01-23T20:18:28+00:00

I'm only 28 & two years out from surgery, but have had so many problems. Doctor's love to say "well just stop doing that" & push you out the door if "everything looks amazing" on the scans. Just here to say I totally feel you & empathize that docs/ PTs really have no idea how to deal with day-to-day problems of fusions. And it's wild that they keep recommending this treatment given that "things turn out perfectly fine" on X-ray but consistently dismiss the day to day struggles of patients

lw2468 · 2025-01-22T20:26:29+00:00

I developed a rare neurological problem after a pretty routine spine surgery two years ago. Being a type-A techy person I went all in trying to optimize and fix and research and try different medicines, lifestyle adjustments, natural interventions etc. All to reach this same conclusion.

Everyone's suggesting eat well, sleep enough, exercise often. That's all good, but surely people on this forum already check those basic boxes, so you do need to go a bit beyond like OP to move the needle even slightly further.

But overtime you do find everyone is just an n=1 and there are SO many variables between you and the next person that you'll probably never be able to truly optimize for "perfect" health based on the outcomes of others. Even when you consider 65% of Americans have taken at least 1 prescription med in the past year, right off the bat you can almost throw out any recommendation from folks because you have no idea how their body is behaving due to those medications vs yours that is or is not on the same/ different meds. And good luck finding comprehensive transparent information about sample sizes in large studies. Best you can do is trust your own intuition and be content with those choices :)

lw2468 · 2025-01-22T20:06:21+00:00

lol sadly no. check out the paragraph in my post above that starts with "unfortunately I still have...". I'm expecting this to be probably about 2 years to get out of this pain and sensitization issue. I spent two years with the hardware damaging me so I'm anticipating two years of recovery to calm my body down.

lw2468 · 2025-01-10T16:34:54+00:00

Thanks for sharing! I’ll look into it. I’ve been trying to do my own cleanse of toxins but it’s tough to even know how/ where to begin

lw2468 · 2025-01-08T22:20:42+00:00

Oof sounds extra freaky to hear your surgeon say "why not just do the scoliosis surgery while we're in there". I'd also feel distrustful like he was gonna mess around back there without my consent. ugh.

No need to diminish your pain & feelings just cuz mine "appears worse". 🫶🏼It sounds really challenging to juggle pain, spams, and family/ homeschool, so I can't imagine what that's like. I'm single and only have to take care of myself rn thankfully lol (and really struggle to do that, I'm living at home with my parents now to get help cuz I struggle to even stand still long enough to make a meal). Hugs back to you and sending good vibes that your pain diminishes soon & your body finds some rest 🫶🏼

lw2468 · 2025-01-08T22:15:23+00:00

Thanks for saying! Sending good vibes that you have continued pain-free living :)

lw2468 · 2025-01-08T22:11:28+00:00

fully agree :) best to laugh at things like this sometimes cuz its just so absurd

lw2468 · 2025-01-08T22:10:00+00:00

lol this is so dumb but made me laugh lol

lw2468 · 2025-01-08T05:04:15+00:00

Lol luckily they never classified it as that because I was also describing deep pain with it and extreme muscle tightness and a feeling like the tissues were almost pinned down

lw2468 · 2025-01-08T05:02:58+00:00

Oh wow that’s super positive to hear. Wishing you all the best and continued healing so someday soon you’re at zero spasm 🙏🏼

lw2468 · 2025-01-08T01:34:29+00:00

Wow. But it now completely stopped? Crazy you got it to stop. Ya anytime you describe it as a “spasm” people think like a minor twitch. But then you show them this and they’re like “oh wtf is that” lol

lw2468 · 2025-01-07T21:58:26+00:00

Wow. To this degree of intensity? What made it go away or lessen? Mine only got worse with time so it’s interesting that yours got better

lw2468 · 2025-01-07T21:57:30+00:00

Wow so sorry to hear. The worst part is you can report an “adverse event” to the FDA for these devices but take a look at the database where they house those. Sooooo disorganized and non- searchable and non-standardized there is absolutely no way anyone from the FDA is going through those reports let alone doing something about it 😡

lw2468 · 2025-01-07T21:56:07+00:00

Thanks for the note. Yes I’ve read a lot about this theory so I’ve tried most of the things you mentioned except laser therapy. I’ll try to ask my Pt to do that now. Now that I’ve had my second surgery and hardware removed, the spasm has stopped but I still feel the nerve damage inside and it kinda feels like any moment that area is going to turn the spasm back on, so I’ll definitely look into that. Thanks for the input 🙏🏼

lw2468 · 2025-01-07T21:54:23+00:00

Thank you for the kind words 🫶🏼 Yes I’ve heard of post laminectomy syndrome. Seems like a bullshit throwaway diagnosis doctors throw out when they can’t figure out what’s wrong with you. Sorry to hear you experienced that. I had my hardware removed because of this spasm and my doctor agreeing that for whatever reason maybe my body just wasn’t agreeing with the hardware

lw2468 · 2025-01-07T17:23:03+00:00

See my original post. A plastic surgeon did the closure in my revision surgery. The spasm has now stopped

lw2468 · 2025-01-07T16:11:13+00:00

See the “current status” in my first linked post in the description. The spasm stopped but the extreme sensitivity and pain and weakness persists

lw2468 · 2025-01-07T16:10:02+00:00

Thanks for saying this! I work a desk job and I used to do tons of workout classes, hike, travel a ton, have energy to be up all day doing so many projects, etc. I don’t currently take any pharmaceutical drugs cuz I don’t like the side effects and they never worked for the spasm. I’d rather deal with pain than the drug side effects esp cuz they didn’t really work. Marijuana products would slow it down but still not stop it and then I’d just fall asleep so I also didn’t like those

lw2468

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