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Basically I feel like my entire lower body is in a pool of hot lava and the flesh is melting off my bones, it is a living HELL! Saw a new pain doctor a couple weeks ago and he said I have the spine of a 90 year old. All that abuse I did to myself when I was younger has come back to haunt me, from jumping down flights of stairs in my chair to racing my pilot. I am also T4-5 and have rods that go from T1-T8, the rods are fine, but the 2-3 vertebrae below them are just about gone.
Its no fun man, one thing I suggest is, if you can, DO NOT start taking pain pills. I had a doctor that was just force feeding me pain meds, this was years ago, now Im at the point where they dont hardly do anything. I wish I had some answers for you bro, this March will be 37 years for me, thats a long fucking time, never thought I would make it this long. 3 of my best bros I was in the hospital with have all passed away....getting old scares the shit out of me man, I dont want to lose my independence, but is it inevitable. I dont even know what my next step is, I just take one day at a time.
Have you talked to anyone about getting a spinal cord implant? They put in a little pump so it goes straight into your spine, usually with baclofen. That is something to look in to.
Anyway, Ill be thinking about ya brother, if you ever need to vent or get shit off you mind feel free ocscottie@hotmail.com
Just want to re-iterate that I am far from an expert on these things, But I'll give you some things I would think about.
I can certainly understand anyone including medical professionals being hesitant, giving any advice over a forum. I think it goes without saying that people should not replace actual professional medical care with advice from any person given through any forum.
OK, lots to digest there. But with your existing scoliosis, I am kinda thinking lots of these changes are directly related to your scoliosis as opposed to say your crash. Clearly the crash didn't cause the type of degenerative changes that occur over time, likely years or decades..
You aren't saying if you have any symptoms or things you are worried about. Gonna go out on a limb here and say you actually have pain, or at minimum discomfort, numbness weakness, tingling etc.
I would think, unless there are findings or symptoms, worries about instability or worsening of findings or symptoms, I would also be hesitant to have a fusion. Just feel in order to get that done, I would want to know how it benefits me. The spinal surgeon would be the person to answer those questions. What locations exactly did they want to fuse and why?
Also, inversion therapy may or may not be something to consider. But before I would do that I would ask the spinal people if they thought there was a reason that might do harm.
Again, and I feel this cannot be stressed enough. I can certainly understand medical professionals being hesitant, giving any advice over a forum. I think it goes without saying that people should not replace actual professional medical care with advice from any person given through any forum. Something like Telemedicine has it's place perhaps, but has limitations, whereby there is no way to perform an actual hands on examination. As such, It does not replace an in person medical consultation..
I had been hoping you'd reply. I know when you're quit things probably aren't going good for you. I'm sorry I havn't been the greatest friend and check in on you....but I think about you alot. I know your vertebrae are just crumbling. That is my greatest fear man. I'll be 19 years SCI in April. Fuck I'm 37 years old. I can't fathom you have been in a chair since 1985(?). The stories you have from those days are wild. The world sure made it hard on you early gimps.
I'll remind you, I don't have any hardward in my back. I think this is a good thing, long term. But I have had a number of compression and wedge fractures in my T6-7-8, right under my original injury. And scoliosis is inevitable. I done abusing my body. I realize that if I want to make it to 40 years, I gotta chill out. That said, I've been a good boy for a year and have been "living right". Still things go wrong.
I don't have the nerve pain you talk about. Yeah my butt will burn, or my legs will burn, but I just change position or give a little massage and it pretty much goes away. I think I block alot of it out too, but that can only work so well. I don't do pain meds, just ibuprophen. But this current back issue is pushing my limits on pain.
I just hate meds all together. I never want to be a "slave" to a pill. Not even the oxy stuff. Even baclofen I just push it aside. I work on my spasms through stretching, massage, and general activity. Which has been a net ZERO the past 3 weeks. And I feel all my progress being lost.
This is no life to live. This sucks to say, but it's the truth. I feel for you.
I wish I could help you.
Keep your head up. Enjoy the little things. You watching any good shows? "Raised by Wolves" on HBO is some wild shit! Its Scifi by Ridly Scott.
I don't seem to have your number any more. Would you mind PM'ing me? I want to stay in touch better.
Love you bro. You deserve a break. Let me know if I can do ANYTHING!
All the online disabled communities are...well....pathetic. It's a game of "who has the worse life".
That's not a contest I want to win. I want to enjoy life with what ever I got.
But seriously thank you for your time. You don't know me but you're one of maybe 3 people who don't treat me like a sympathy case when I present a problem. You encouraged me to go to the ER. I had been dragging my feet and who knows what would have happened if I continued to dismiss it.
For the record this ER visit I had fantastic care. My admitting doc was persistent and thorough. He took his time to just LISTEN TO ME. That trait is so much more powerful than any medical knowledge or expertise - at least from a patient's perspective. You have this quality and it shines.
Ya'll take care and take care of eachother. I hope my next update is me posting a picture railing in the pilot or wheeling the jeep. That stuff keeps me going.
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Thanks for the belly laugh (it hurt though)! You need to figure out a way to pop the cork on that Champaign bottle!
Since we're being real, I'll tell you its part of my morning routine. The spasm relief is 1000% more effective than anything else. It took me a while to figure out how my body works. Now the girlfriend helps alot once she learned my buttons.
I know you're a quad, and things might be different, but I have some tips if you want to hear them? No homo.
dam sorry you are dealing with this stuff. What jemcee earlier was talking about was what you are talking about, neuropathic pain. Essentially pain related to nerves, but it doesn't necessarily have to originate from the nerves so to speak. My understanding is that generally all pain is somewhat nerve related. Has to get to your brain somehow, so not going anywhere without nerve conduction of some sorts.
There are various meds that do work on neuropathic pain. Jemcee mentioned lyrica. I was on that along with some other stuff actually an anti depressant as there is some evidence depression decreases pain tolerance . There are plenty of others. My pain was not neuropathic in origin, but I figured I would try it.
I had more failures with meds than actual successes. Eventually we, (my doctor and myself) , found something that worked somewhat and cut my pain significantly. Enough that I was able to get off of some effective but potentially harmful meds significantly. I am one who believes the goal is to make the pain tolerable, not necessarily zero. If you get to zero great, but you want to achieve these goals with the least risk of potential harm.
As much of a hassle as it is, you have to find someone who can help you.
Lots of good guys here in your same situation. Take advantage of the opportunely and give back when you can. Not sure if the PM works here, but if any of you have specific questions I could possibly help with. I will certainly try.
It took me some time to get things somewhat tolerable. Maybe get a second opinion if your current pain management guy won't work with you. Perhaps one of your healthcare providers can help advocate for you. Sometimes surprisingly just asking them works.
I would Imagine there are some support groups of others with SCI's and/or chronic pain alone. Hope you can find the help you need .
Glad you had a good experience, in the ER, relative I know. Sad that some of the forums have not been useful. Lol over the podium and champagne comments
It might be worth looking into and having a discussion with your doctor. It probably wouldn't hurt to try and the injections lasts for a few months.
I know the crash had nothing to do with it. Just the latest of many scans I have had over the years.
Reduction of weight at only about 10 lbs (and significant fly more is better) shows positive results for people with back issues in multitudes of studies.
I call it the drink beer lose weight diet. You eat exactly what you eat just limit portion size and track your calories. Eat slow. Consume more water….takes some discipline to get your body from talking you into raising the fridge in the middle of the night but it eventually passes and your body is like ok cool. This is how we are living now. With less. Cravings go away
A lot of fad diets aren’t sustainable and people fall off the wagon. Keto etc.
That shit SUCKS! This shit SUCKS!!
Wish I could help..
Yeah the doctors are really not positive about it (I'll be 19 years in April as well, and there's been no real promise of it) but they're keen to help and they've got plenty of links and alternative methods but it all seems too hard (Pun intended)
I don't have a missus and all I can see is one of them ruining everything haha..
I've been ruined by a beautiful girl in the past and It's been so long I've forgotten all the positives haha.. All I can see is me letting them, not let me do what I want just so I can see or touch what I want later! As we all know that shit is a slippery slope haha..
My point is I worry about the decisions I'll make if I awaken the loins again haha.. I do like the idea of it though, it's weird and frustrating watching porn, and although the ladies don't hate the fact that there's no 'bdaah duoooh' I do feel there's a 'weirdness' for them not getting that finish.. I'll look into it a bit more and let ya know if I need tips.. Heaps homo
I had a severe lower back issue a while back. It was a constant ache that made daily tasks really challenging. What truly made a difference for me was visiting a physio clinic. There, Arzoo Patel worked with me. She used a combination of hands-on therapy to ease the muscle spasms and tailored exercises to strengthen my back, which significantly improved my stability and reduced the pain. She also introduced me to techniques for managing pain and avoiding future injuries, focusing on maintaining a balanced posture and regular stretching. Her approach was not just about short-term relief but also long-term health, which really changed my perspective on managing back pain.
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