24 replies to this topic

[mike13]

This may sound strange BUT,
I had my accident in 04, and am L-1/L-2/T-12 Incomplete.Bisicaly my lower left side is what is not working.
When I had the accident, the left side was not going to work and they put it back together anyway.
The question I am wondering is, has anyone had or thought about having the inoperable limbs removed?
I know or have heard about phantom pains and all, But the pain now is truly to much!
(I can see why some people commit suicide from cronic pain.)
Please any and all help is appreciated
Thanks
M.S.

[biggdoggpa]

Is that even an option? can you just call the doc and say hey i want to remove a limb? i am asking i don't know? that sounds like something you have to decide? i also have heard of phantom pains there was this nut on a TV show who was perfectly AB and he sawed his foot or leg off in my opinion he was f*@king mental but to each their own!!!! you, someone with a legitimate issue maybe its something you would want to consider? i would say to really research, look for amputees and ask questions! where ever they cut could possibly put you in the same position your in now? best of luck to you bro!! sometimes its hard for us to believe but there is a reason we are here!!!!

[Tetracyclone]

There has been discussion of this on old threads. Yes, it has been done. Others have said they were glad of dead limbs later when they needed a skin graft for flap surgery. Amputation does NOT erase phantom pain- ask any amputee.

[Smileyblue]

Phantom pain is just that, phantom.. It does not originate in the limb, therefore will still be there even when the limb is not..

Pain can be a terrible thing! I'm sorry you are going through this.. Try to hang in there while you and your doctors work towards finding the drug, or combination of drugs, that works for you..

[allis53ca]

Amputation does NOT erase phantom pain- ask this voluntary amputee.

[Illinois Boy]

I had to have my right leg amputated at the hip.... No phantom pains at all...
Although I would have liked to kept it for balance purposes....

Jim

[mike13]

I understand the whole phantom pain thing, I am in constant pain and when I am tring to sleep, I have to wake myself up to roll over.
It's that dead weight constantly pulling or pushing down.

Plus, I cannot walk unless I have a full length brace on, which the doctors said I should not be on it anyway.
So it's not balance, I have none. I don't feel the leg at all.

[wheeliebear75]

The pain you're "feeling" in your legs is almost all to a point in your head.....not that you're imagining it....quite the contrary. The pain signals are stemming between the spine & brain, therefore removing a limb which is further down the communication relay would most likely do nothing to relieve your pain (may even cause it to become worse). Not to mention that we have a tendency to not heal as well as our AB counterparts + are more prone to infections.

Question #1: Have you seen a PAIN MANAGEMENT SPECIALIST yet?

Question #2: What medications & other solutions have you already tried? There are many pain solutions out there; Rx,TENS unit, heat (heating pad, hot shower, jacuzzi), marijuana, meditation are all helpful for me & MY nerve pain.

The Dr.s CAN chemically "finish the job" by putting an epidural in they can make it so you're 100% paralyzed AND theoretically not sensing the pain signals.....IF you DO STILL FEEL the pain, they would take out the epidural & no longer administer the medication that numbs (not sure WHICH ONE is used), if it DOES WORK at making you no longer feel the pain then they'd leave the epidural in & give ongoing doses to keep the chemical paralysis. BUT seriously this is for those who've tried everything under the sun, where even those meds that would normally tranquillize a horse (pain management had me try a Ketamine nasal spray....that's what vets normally use to tranquillize horses & other animals) & yet still barely touch the pain.....IT'S AN EXTREME MEASURE for pain control!

[mike13]

Thanks all

I have tried pain management, and yes I have a medical marijuana card. Although here in AZ. we don't have any dispensaries yet, so medical grade is just a matter of opinion. hahaha... I was on darvacet, vicodin and some other kind of darva something or other, But I was always just a zombie. Worse than I already am,,,hahahaha...any way. I had them change my meds to(Nerve Blockers)Gabapentin/Nurontin and Lyryca and just a 10Mg Methadone for pain. Now don't get me wrong, I still have a script for 750Mg. Vicodins for when the pain is to much, it takes the edge off the stabbing ones.

I have use of my right leg (Muscle not nerve)as in I have no feeling from the back to the toes along the back side and bottom, the rest of the leg is normal so I can drive a regular automatic vehicle, Luckily.
It comes down to the dead weight either the weight on top of the other leg or having to pull it here and there is ok when your awake But when your asleep, you have to wake up to move it, and when you are moving it, it's because I am awoken because the leg has slid of of the other leg or pillow.

I am not sure if there are para's out the that are just one'as not unik that just sounds wrong. you know I am clasified as a para but I still have use of one leg? so I don't know what the hell you call us 1-ik?
I had a custom leg brace made but if the leg was wacked above the knee, the brace could be adapted if nec.
I really have no balance with or with out the leg braced, I cannot stand with the brace unless I have krutches, walker and so on.
I had also messed up the leg in the accident and when they put it back together they knew it was not going to work, so they actually (Skrewed) it together.
I kept asking them from the beginning, Why did'nt they just take it off? They still have not answered me and thats 5 years ago. hahaha...
So I hope yall understand this is something I have thought about. and continue to..

[Ryden Les]

Hi Mike

I under stand why your thinking has led you to this question. But.....Hang in there, find a way through it! The future of stem cells may have the cure......for all of us maybe. Nerve regeneration is one of the fields getting lots of research money. We live in a time when change and advancement is quickening it's pace in all aspects of our life.

I'm pretty sure I know your pain, after walking a small distance my pain would kill me, but I take large amounts of Oxy,& Gabapentin and Valium. This dulls my mind, bearly takes the edge off the pain, but it gets me through, with hope for a better day.

All the answers to pull through, are in the people and their words, on this forum. Talk to them and the Pain Management folks, ask questions, learn, experiment with ideas that help others. Find that way that will get you through. Ask a small kid what they would do......my 8 year tells me ways to do things, that I'd never think of. They have a way of looking at things, that we've forgotten.

I've found I get real down for a while,It gets BAD.....then suddenly it starts getting better....Then for a while, Life is pretty damn good.

Hang in there man, work on other solutions, Maybe try tying your legs together at night. Use your better leg to muscle your bad leg to another position. Someone out there has ideas that work for them, ask for ideas....then try them.

Unless the body part is putting your life in peril, keep it!!!

Take Care Mike,
Les

[wheeliebear75]

mike13, on 11 August 2011 - 12:40 AM, said:

Thanks all

I have tried pain management, and yes I have a medical marijuana card. Although here in AZ. we don't have any dispensaries yet, so medical grade is just a matter of opinion. hahaha... I was on darvacet, vicodin and some other kind of darva something or other, But I was always just a zombie. Worse than I already am,,,hahahaha...any way. I had them change my meds to(Nerve Blockers)Gabapentin/Nurontin and Lyryca and just a 10Mg Methadone for pain. Now don't get me wrong, I still have a script for 750Mg. Vicodins for when the pain is to much, it takes the edge off the stabbing ones.

I have use of my right leg (Muscle not nerve)as in I have no feeling from the back to the toes along the back side and bottom, the rest of the leg is normal so I can drive a regular automatic vehicle, Luckily.
It comes down to the dead weight either the weight on top of the other leg or having to pull it here and there is ok when your awake But when your asleep, you have to wake up to move it, and when you are moving it, it's because I am awoken because the leg has slid of of the other leg or pillow.

I am not sure if there are para's out the that are just one'as not unik that just sounds wrong. you know I am clasified as a para but I still have use of one leg? so I don't know what the hell you call us 1-ik?
I had a custom leg brace made but if the leg was wacked above the knee, the brace could be adapted if nec.
I really have no balance with or with out the leg braced, I cannot stand with the brace unless I have krutches, walker and so on.
I had also messed up the leg in the accident and when they put it back together they knew it was not going to work, so they actually (Skrewed) it together.
I kept asking them from the beginning, Why did'nt they just take it off? They still have not answered me and thats 5 years ago. hahaha...
So I hope yall understand this is something I have thought about. and continue to..

Well they're doing amazing things in the way of reconstructive surgery for artificial hips & knees.

I know that the dopey/drowzy side-effects can really be a problem especially if you're trying to go to school or hold down a job. But in the world of pain meds if you can use Vicodin for the tough pain then you're actually not doing all that bad. Not that your pain isn't disrupting your life but it sounds like at least you haven't had to go to using things that require you pick up a triplicate script from your Dr.'s office for your meds., & this is actually something I'm hoping will help you keep your chin up & not contemplate such DRASTIC measures.

[mike13]

Like I said earlier, I am a realist. I cannot live my life with I hope, I hope, I hope. I mean if something happens then great but I am living in the here and now. Plus with there not even being in any testing phases yet it will be a minimum of 10 to 15 years away, Well then I would be in my mid 70's. hahahaha...
I was going to a pain managment guy and he came up with these injections right into the spine. and it made my hips burn and ache and of course did not help my problems.
And wheeliebear75, My scrip is for 4 times a day, but seriously I am stupid enough, I don't need any help. I just can't sit there and drool. hahaha...

[rue2you]

If you had the leg taken off, and it is the only leg affected (meaning you use the other leg fine) would you be able to walk with a prosthetic leg? If so, and you had to live with phantom pain, wouldn't it be worth it to be able to walk? Unless I misunderstood something and you already are a walker?

[mike13]

I am able to walk with a walker/crutches/4-arm crutches but it is very tiring. The only function I have in the (1)One left leg is I have some Glutte muscles, not much, enough to get the weight going to swing it forward. AND thats the point I am at, wether I have a leg with a lockable brace or a full prothetic I don't have control for balance, I would still need crutches or so on. so basicaly I am in the chair permenently. and the other major thing is the shear dead weight that is always there. when I lay down I have to balance it with pillows and such and when I wake up, I find out it had a mind of it's own and moved during the night and this why I am up.(Pain) I have to wake myself up to roll over, because either it's the balance thing or turn the other and either hold the leg or just let it flop and I don't know if it would actualy rip off??
I Have and am thinking about this...

[Edinburgh Colin]

I'm afraid I cannot give you a compelling medical reason or tell you from my experience why you should keep it but I really think it's a bad idea to cut off bits of your anatomy that are not rotten or life threatening. I also think that a time would come where you would regret it and that would be so heart breaking!
Sorry it's all from my heart not head,
Good luck and at the end of the day it's your choice.
EC

[rue2you]

Well, it is true (and I'm sorry for you truly) that all of us with paralyzed legs deal with heavy dead weight legs and either have to be turned or have to wake up to turn ourselves. That is one of the beauty's of paralysis. I am not telling you this so that "you get over it" but just to tell you that we all deal with the dead legs and we still choose to keep them.

So...it may just be an adjustment thing for you and one that feels so weird because you are comparing it to your other leg. I could only imagine that it would feel weirder with both your legs paralyzed. I can't speak from experience though because both of my legs are dead (although I can move them a bit) but they are still extremely heavy.

So, whatever you choose, of course we will support you and your decision. But this may be more of an adjustment to paralysis than deciding to amputate. Just a thought.

[mike13]

Like I mentioned earlier, This is not something new but from August of 2004.
Is there many others that have use of one leg and in such I would relate somehow?
I am truly not trying to say anything wrong about anyone. I understand what I want to say,
but I think sometimes it just does not come out right away. Do you know what I mean??
And as you said, you deal with the heavy leg issue, but do you feel anything besides heavy?
After awhile it's like bone on bone, and damn it's really hurts and leaves dent's in both legs.
Are there many parra's that have use of one leg?

[wheeliebear75]

OK let me ask you a couple of questions:

Did you have some sort of trauma to the spinal cord either accident or injury?
Do you have back pain associated with this leg pain?
Does your back hurt the more you try to use your leg?

If you answered "yes" to any of these questions then I'm doubtful amputation will do anything to take your pain away.

If you had a trauma to the spine (accident OR illness) do you still see a neurologist?

If the answer is "yes" than please ask him/her what their MEDICAL OPINION IS!

Does the pain in your leg stem from the injuries to the spine or to IT? (If they say to the leg itself....it MIGHT help). Ask your Dr.!

What I meant in my assessment of your meds is that...at least you're not using heavier Rx like the Percocet I take (I can't have it called in & there is no such thing as "refills", it's a trip to the Dr.'s office for my B/F OR my mother to pic up the paper script in person, & then walk in this specially anti-forgery treated paper into the pharmacy EVERY TIME...)

Most of the narcotic pain killers are take every 6hrs as needed.

I can sympathize with not wanting to be medicated all the time. But are you SERIOUS?!?!? You're ACTUALLY CONTEMPLATING the chopping off of a limb as a way of avoiding having to take VICODIN?

[mike13]

Oh man, I can depend on you whelliebear75 to just not hold back, hahahaha...
Yes the injury in-complete spinal was from an accident in 04,
and yes I do have back pain associated with leg pain? It all happened at the same time,
If I walk my back hurts more, but also my leg will throb if I walk alot. so they all hurt..hahaha
NO, I do not any longer see a neuroligist. Insurance???
My GP normal Doc. really has no medical oppinion, when I ask, (Hey why does my right leg work)? they just have that dear in the headlight look in there eyes.
I take METHADONE and it is one of those class something narcotic? Same as yours, drive there, pick it up, get it filled. sometimes they say O you have to come in, about once every three months.
Sounds like you got the ticket thow, your B/F or Mom can go get it for you. My Dr. won't let anyone else pick it up.
BUT seriously yes when I was taking VICODEN, PERCO OR PERCA? DARVA WHATEVER. Ya when I was taking these I was not in that much pain.
Of course I don't remember much, an alarm to remind me to take more pills and go cathetar. then go back and basically stare at a wall and drool.
Yep was not in pain thow. see what I mean, I am just asking around. Is there a group of para's that are only para on one side?

Let me know
Thanks all for the input, it does help.

[Ryden Les]

Hi Mike

Well after thinking about my idea of straping your legs together to aid your movements while trying to sleep. I decided to try it, well it was my crazy idea, so why not!

1st nite... two belts, 2 inches wide, one wrapped around the mid calf area. The other, mid thigh. new holes in belt were needed to aid in strapping the buckles.....I went to sleep....straps were to loose and moved around, tightened them up. Much better I could roll side to side, somewhat easily....but straps dug into my leg I was dragging, and really hurt after a while. My sleep wasn't as bad as I thought it would be. but I take a big dose of oxycontin and Gabapentin before bed. So normally I roll side to side two maybe three times a night. Other than that I'm just passed out!

2nd nite.... wrapped sheep skin, like I put on my motorcycle seat for long trips[don't use that much these days]. Around the legs under belts....This was 100 time more better. tightened it up and went to sleep....side to back, wasn't bad, back to side not bad either. I did have problems side to stomach and mostly stomach to side.....guess I need more pratice and technique could use some tweeking. I'm also thinking a prosthetic and orthotics office has equipment similar and most likely better.

PM me, I am real good about comin up with stupid ideas. Some times, some good ones pop up. Other times I can just sit their and drool with the best of them. Oh ya get rid of the additives Acetaminophen,Ibuprofen, get straight Oxy. Those additives will kill ya.

I hope someone who has the same type problems you do, does speaks up!!! It does really help.

Take Care Man
Les

[paul1404]

have you thought about putting your unwanted limbs on E-Bay ? I will offer $100 for the left leg or can you do the pair for say $150 including P&P

[mike13]

I have tried the straps idea,(velcrow straps)and it was OK, BUT see I should have added that I am only getting like 4 hours of sleep at night.
I have tried (Ambien C/R)&(That other one)and still no more that 4 or 4-1/2 tops. Like last night, I took my normal meds,
1. 800Mg. Gabapentin
1. 100Mg. Lyrica
1. 10 Mg. Methadone
2. 750Mg. Vicoden
2. Med. Marij
and I got a total of 3-1/2 hours of sleep. It has been like this ever since the accident.
I really am so tired, I have tried numerous things, staying up from 5:00AM Mon. Mornining till after Craig Ferguson, Late Night Show.
So thats about 1:15AM Tue. Morning and I go to bed. And sure enough back up at 5:45AM Tue. Morning.
It's like this all the time, I have had mayby 4 times in the 7 years I have been in the chair, that I have gotten 5 hours of straight uninteruopted sleep. But I don't know what or how to do it again. hahaha...
Watch, I'll go to some doc's. and they will tell me it's all in my head. WELL at least something is up there. right?
I think i never dealt with all of this, untill now. so it seems like everything is bugging me.
SORRY ALL ! ! !

[rue2you]

mike13, on 17 August 2011 - 05:25 PM, said:

I have tried the straps idea,(velcrow straps)and it was OK, BUT see I should have added that I am only getting like 4 hours of sleep at night.
I have tried (Ambien C/R)&(That other one)and still no more that 4 or 4-1/2 tops. Like last night, I took my normal meds,
1. 800Mg. Gabapentin
1. 100Mg. Lyrica
1. 10 Mg. Methadone
2. 750Mg. Vicoden
2. Med. Marij
and I got a total of 3-1/2 hours of sleep. It has been like this ever since the accident.
I really am so tired, I have tried numerous things, staying up from 5:00AM Mon. Mornining till after Craig Ferguson, Late Night Show.
So thats about 1:15AM Tue. Morning and I go to bed. And sure enough back up at 5:45AM Tue. Morning.
It's like this all the time, I have had mayby 4 times in the 7 years I have been in the chair, that I have gotten 5 hours of straight uninteruopted sleep. But I don't know what or how to do it again. hahaha...
Watch, I'll go to some doc's. and they will tell me it's all in my head. WELL at least something is up there. right?
I think i never dealt with all of this, untill now. so it seems like everything is bugging me.
SORRY ALL ! ! !

What do you do for a living?

[mike13]

rue2you, I don't work. Im in the process of rebuilding a 65 chevy longbed p/u trk.
That is enough to kill me in it's self. hahahahaha.....
And Paul1404 mayby an E-Bay bidding war? could you actually see that up for bid? thats sick dude.

[KayDub]

Mike, most of damage is on one side. I had a virus and bacterial infection that attacked my peripheral nervous system and lower spinal cord, and left with what is like incomplete L 5 damage. I have function of my glutes, minor B&B issues and because I was able to get some movement back in my left leg, I can walk with crutches for about 10 feet at a time slowly and painfully. I'm in intense pain because of the nature of the nerve damage and I suppose I would consider my right leg "dead weight" (but it occasionally works like a crutch if I need to stand for a second, but then collapses). I'm in my chair 95%-99% of the time, depending if I'm at my mom's house where I'm currently living, which isn't accessible and forces me onto the crutches (resulting in more pain) more often.

I'm on/have been on:
-currently 40 mg methadone a day
-10/325 mg percocet
-30 mg oxycodone every 4-6 hours
-lyrica
-cymbalta
-dilaudid 4 mg every 4-6 hours (horrible no pain relief and horrific nightmares)

I think that covers the whole spectrum of neuropathic and opiate pain killers. I'm still in pain constantly, just a little less so I can function better. I've also had a number of spinal nerve blocks and epidurals. They're considering putting a spinal cord stimulator or pump in. Also I don't know how old you are but I'm 23.

I still would never contemplate amputation. Part of it, at the risk of sounding superficial, is aesthetic. Yeah I'm in a wheelchair, but I have two fine looking legs. And at 6' 3" and a former college athlete, I have pretty good looking legs according to the general public. Why lose those? Also with the nature of my damage, some more movement might come back. They can't guarantee anything they might be dead weight forever, but even if there's a miniscule change, why would I risk losing that?? Also that invasive of a surgery? Just bound to cause more pain IMO, the trauma to your body, the recovery, phantom limb pain, the possibility of further nerve damage in the operation... no thanks.

You sound like you've tried a lot of things and are frustrated. But I think some non medical treatments would be helpful. I started swimming and it's helped a lot, the exercise improves my mood, I love the feeling of the water, my legs don't feel like dead weight and stretching and moving like that helps with some of the pain. I still work with the adaptive kids I did before my illness (working on getting back on the snow with them too) and it helps keep my perspective in check. I don't want to judge you but you sound bitter about your situation. I don't want to come along like miss cheery rainbow glitter farts or whatever, but there is a lot to be said about optimism or even just realism. Things suck, but they could be worse and there's always something new to try. Cutting off the thing seems like a reaction, not a solution, a frustrated attempt to get rid of your pain and to get back at your situation. If you chose to I respect that, but as someone in a similar situation, who's maybe tried more things like the injections/blocks/surgeries, I just wouldn't do it for so many reasons. I hope you reconsider and can find something that works better. Pain doesn't magically go away either, it's all about managing it properly, which isn't nearly as bad as it sounds.