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Post by topher70 on Nov 24, 2017 10:25:44 GMT -7
Stumbled across this site looking for help, questions and answers. I'm 46 and just at the end of my rope. I'll post my story when I get a little more time because it's long. The short of it is 3rd and 4th degree burns of left leg that was salvaged. 1 1\2 yr later it's still unusable, has open wound and constant 24/7 level 8 pain despite being on large amounts of narcotic pain meds. Burn surgeon/wound specialist keeps telling me it will probably never heal and just wants to observe it, despite getting chronic infections. I just don't know what to do. I'm tired of the constant pain, the surgerys, not being able to walk without aid and the depression. It's just too much at this point.
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Post by snowyh on Nov 24, 2017 12:08:42 GMT -7
Hey, Topher. You don't specifically ask, so I'll assume you're looking for advice about whether a better option may be to amputate your leg. We've had multiple people visit our forum with similar situations--that is, they live with a useless and/or painful limb because their doctors are reluctant to amputate. As a general rule, amputation is considered a last resort by the medical community because they equate it to failure. I'm not saying it's bad that doctors are slow to recommend amputation (it's irreversible, after all), but there seems to be a consensus among patients that doctors sometimes take too long to see it as a viable option.
Just from the information you've provided so far, it's clear you feel you've suffered enough and are ready to try something other than "observation." We patients are the ones who have to live with the consequences of whatever decision is made, so it only seems natural for you to seek out information on the "unspoken" option of amputation from those of us who can speak from direct experience. You've come to the right place for that! I'm not the best person to respond because my experience was completely different; however, other members should see your thread soon and be able to advise you far better than I.
Hang in there, and if you feel like sharing more of your story please do so. It would also be helpful to know where you are in the world so we can recommend local resources that may be available to you.
Helen
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Post by topher70 on Nov 24, 2017 13:27:34 GMT -7
I am tired of the pain and the Dr not listening and just prescribing pain meds. then he turns around and complains that I'm on too much pain meds. I currently have a 3/4" x2 1 /2" open wound along my achellies tendon that won't heal, even after 6 grafts over the course of a year. I was very active and had a great job as a carpenter before this and now have lost just about everything I own. I am in the USA in Oklahoma.
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Post by cherylm on Nov 25, 2017 2:10:22 GMT -7
Hi, topher, and welcome to the Forum. Helen's given you some good stuff to think about...and I can come a LOT closer to identifying with your situation. I've been a below-knee amputee for 13 years now. My amputation was voluntary, due to massive pain and a severely fractured foot that, despite the best efforts of a number of surgeons, refused to heal. I'll tell you that it took right around a year for my doctors to suggest that we talk about amputation...and even then, they were willing to attempt another repair attempt on my foot. The process they suggested if they were to make that one final attempt was a long, long complicated surgical procedure, followed by over a year in a series of casts, at which point they couldn't predict that any of it would have made a distance. It did NOT take me long to decide that amputation was a viable option.
If my doctors had told me, as yours have told you, that the chance of healing was that low, but that they wanted to "observe" me, I think it would have devastated me. You are a human being, not some sort of medical specimen...you have every right to feel confused and stressed, in addition to your physical pain and the disability.
Now, if I could ask a question or two...have you had wounds in more than one place, or is it just the one on the aechelles that has been persisting for so long? Are the wounds caused only by the severe burns, or are there additional factors (such as diabetes) contributing to the wounds? Have you been referred to the care of an actual wound care specialist, and if so, what did they have to say about matters?
I'll tell you that, in my case, losing my leg was the start of being able to regain a normal life. I don't regret becoming an amputee (although, obviously, I wish that one of those attempts to repair my foot had worked). I have a good life and very little in the way of pain issues. If you do find yourself going this route, know that a good, basically active life is definitely achievable.
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Post by topher70 on Nov 25, 2017 10:03:01 GMT -7
I am healthy 5'10" 180 no meds except pain and wellbutrin. The burn surgeon is also a wound specialist. The open wound is the only one along with 2 damaged artierys and major nerve damage ( no feeling on both sides, front of leg and top of foot. Up my achellies and bottom of foot is just like standing on a red hot skillet). It has 5 grafts in a 6 month period that have all failed. The Dr is already aware of my ankle being locked, the constant pain and me wanting to do something diffrent. I think he doesn't want to admit he failed or he just doesn't care. Which sucks for me. The first surgery I had the Dr said there is too much infection and damage we will have to amputate, I got my head around it and it didn't bother me, had a great uncle missing an arm and he was a farmer and did great. I wake up in recovery and the Dr says I almost couldn't salvage it and that's what stuck with me. If I knew the hell I would be put thru I would have made them amputate it then because now what I keep hearing is it's viable enough live with it. Thanks for letting me vent. It seems to help because my wife tries to understand but just can't and it's frustrating.
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Post by cherylm on Nov 26, 2017 5:25:16 GMT -7
This is definitely a good place to vent...there are plenty of folks who can identify with what you're going through. It can be VERY frustrating trying to explain what you're dealing with to someone who has no personal experience with ongoing pain and medical problems. It's also frustrating to talk to a non-amputee about amputee issues...it's just something that the majority of folks have no experience with and can't identify with the situation.
"Viable enough to live with it" sounds like a sorry excuse to me. I sometimes wonder how much pain, infection, and mobility issues a patient would have to go through if the DOCTOR was the one who was dealing with those issues. Are you able to get second opinions from other surgeons? You just seem way too young to be resigned to a life of pain and disability. If you're healthy other than the injured leg, my own (admittedly biased) opinion is that you need either a doctor who has an actual plan to HEAL that leg or one who will REMOVE the injured portion and let you get on with your life. "Healing" obviously would be preferable...but if you're looking at losing only a portion of your leg below the knee, that's a situation that could give you a much better outlook than a painful leg with open wounds and infections.
Please feel free to check out some of the thread here and ask any and all questions that pop to mind. I hope we can help you sort out a good plan of action for your future!
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Post by stonecutter on Nov 27, 2017 18:35:33 GMT -7
Stories like yours are frustrating to hear. I don't understand how a medical professional can put your life on hold while they say they want to 'observe' you whilst not coming up with a solution to heal you.
I will always reference quality of life. You have an injury. It sounds very serious. If your doctor can't heal you and wants to put you in a perpetual state of limbo while they get to bill you for appointment after appointment noting that they are trying to build a looooong relationship -- I'm thinking a new doctor may be on the menu.
Honestly man - I feel for ya. I came to be an amputee by means of an industrial accident 23 years ago. I had a skin graft due to fasciotomies (I had a revision surgery in 2012 and they managed to get rid of it). I think I may have had a similar experience, since one surgeon wanted to work to save my leg while the other recognized it as something to take off to improve my quality of life going forward. I had an added complication of infection and gangrene, so there was a sense of urgency for a decision.
We amputated and I've never looked back. It isn't the easiest thing you'll have to live through in your life, but it does normalize your life with little / no pain.
The advice you've heard above is very good advice. Best thing I can reinforce is see more doctor(s) so YOU can evaluate your options for YOU. Look out for #1!
Let us know if we can help at all.
Welcome to the forum.
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Post by topher70 on Nov 29, 2017 21:57:24 GMT -7
Quick update. Had an appointment with my GP today. Told him my concerns, he said I should have been given the option of amputation at this point. He said, to let this go for this long was ridiculous and he would send me to some one to get it taken care of. So he set me up with a Orthopaedic surgeon and I will see him Fri to set a date for surgery. At this point I am so happy I could cry. No more infections, skin grafts, extreme never ending pain and no more let's wait and see. Seems like something is finally going right and it's nice to know there is a plan instead of uncertainty.
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Post by snowyh on Nov 30, 2017 11:54:45 GMT -7
Oh, Thank Heavens! So it's going to be a Merry Christmas after all.
Helen
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Post by cherylm on Dec 1, 2017 1:37:31 GMT -7
That is good news! Now...start looking at the surgical process and your recovery plan. Ask the surgeon about their experience, talk to whoever your anesthesiologist turns out to be about their plans to deal with pre- and postoperative pain...perhaps consult with a physical therapist about things you can do to start preparing for the next stage of your life...and as soon as you know what the surgeon has in mind, make contact with a prosthetist. Yeah, I know, I'm making more work for you, but you want to make sure you're going to be able to make the most of this new chance.
BTW, I know something about that "so happy I could cry" feeling. Once I'd chosen to go ahead with my amputation it was such a relief to not have to worry about it any more that, when I started telling people about my decision they were surprised by just how calm I sounded...like a weight had been lifted. It was a good choice for me, and I hope it's a major improvement for you!
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Post by stonecutter on Dec 1, 2017 9:45:56 GMT -7
That sounds like progress! I saw this video on Facebook this morning and thought of your case... It's a person named Marleen Vverbeek who had meningitis at the age of 13. She lived a life of pain until amputation set her free. www.facebook.com/ossurcorp/ (Look for Marleen Vverbeek). Although it may seem like I am a fan of amputation, please know that It's not my intent to steer you either way. I am a proponent of the patient making a decision for themselves. It bothered me that it seems that you weren't presented with all the options. Please keep us posted on how it goes. I'm sure it's fair to say that we are all hoping for the best for you. |
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Post by topher70 on Dec 1, 2017 10:50:46 GMT -7
Around we go again. Met with ortho dr. He wants to refer to another dr to do a calf muscle resection to try and get the area to heal. Even after my main GP told him what he belives is best for me. It would take 9 month's and would not relive the pain or give me any mobility back. Flat out told him no wasn't going to happen thanks but I would get another opinion. He got short with me an started in about he has salvaged worse and it's still viable. Then I told him I've already made up my mind and I am tired of the pain. Pi$$@! me off. Should of seen the look on his face when I told him I would remove it myself. So I get to start searching for help again. I swear these Drs are dense and have GOD complexes.
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Post by stonecutter on Dec 1, 2017 11:57:27 GMT -7
Keep looking - don't give up until you are confident in what they are telling you. If he can introduce you to references -
that might help, if you're considering giving hem a chance at fixing you up. Options mean more than one route needs to be presented to you... but I am a believer that the decision should be made by the person affected whenever possible.
I have come to realize that surgeons especially are very good at removing the person from the patient. They can visualize fixing the problem like a mechanic visualizes how to fix a car. I find they don't consider the length of time it takes to put your life on 'pause' while they work on you.
Others may have a different perspective. I'm grumpy today so I may be being overly critical.
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Post by topher70 on Dec 1, 2017 12:46:31 GMT -7
I don't think your over critical. I was a happy go lucky, nothing bothered me and caring person before this. Now I'm just angry, mean and hopeless. I try to over come the pain and cheer myself up and be the person I was before but it just isn't working. Pain will really change a person. My wife has noticed it and tries to help but there is not a lot she can do for me. I am truly lucky to have her and she puts up with my bad moods but she shouldn't have to.
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Post by snowyh on Dec 1, 2017 18:11:52 GMT -7
Topher, please don't neglect your emotional health. You're right--chronic pain can really affect a person, as well as stress, and you've had more than your share! Your wife may not be able to help you, but a therapist probably could.
Helen
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Post by topher70 on Dec 19, 2017 14:05:45 GMT -7
5th opinion now. Just got done at O.U. Med in OKC. Met with the head of plastic and reconstructive surgery. He wants to cut the nerves in my calf to stop the pain. Use pin and external fixator rods to immobilize my a ankle for 6 months so the wound could heal. Then screws and plates to fuse my ankle and take out the screws and plates after 6 months. So at least 5 surgerys and almost a year being immobile. He did say that I would be mobile and back to work in 4 to 5 weeks of it was amputated but he wouldn't do it or recommend it also be understands what is happening and this outcome would be so much better than amputation because it's not permanent. Told him to go shit in his hat it's just as permanent in a different way. Said I would probably keep looking till I find a DR who would. Thanked him and left. Sorry had to rant. What are your opinions on his plan? Any body have any of these surgeries done before?
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Post by snowyh on Dec 19, 2017 17:00:36 GMT -7
Sounds like you're still getting more than your share of shit, Topher. You've mentioned earlier in this thread that you're depressed, angry, frustrated, mean, hopeless and tired of being in pain (all with good reason). This does not sound like the best mental state to be making life-changing decisions! If you have the insurance and/or financial resources, I would recommend talking to a therapist to help you sort out your feelings before you move forward with ANY plan. Does your wife have an opinion on the matter? Whatever you decide affects her life as well.
Helen
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Post by topher70 on Dec 19, 2017 22:06:45 GMT -7
Sounds like you're still getting more than your share of shit, Topher. You've mentioned earlier in this thread that you're depressed, angry, frustrated, mean, hopeless and tired of being in pain (all with good reason). This does not sound like the best mental state to be making life-changing decisions! If you have the insurance and/or financial resources, I would recommend talking to a therapist to help you sort out your feelings before you move forward with ANY plan. Does your wife have an opinion on the matter? Whatever you decide affects her life as well. Helen I do have a therapist. She is awesome. She has been treating my depression and anxiety for the last year. My wife would like me to try and keep it but she said what I decide is my choice, because she is not the one with the constant pain and either way she would be fine with it, she said she would still love me legless or not. As for insurance I have none and cannot get any. I've tried SSSI and medicade but nope. So far we have sold everything of any value we own, to keep up with med bills and utilities but that is running out. So I keep my faith and pray it will turn around. |
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Post by topher70 on Dec 28, 2017 4:45:41 GMT -7
Well something finally went right. Had bitter cold going on Tue morning. Was out in it for a few hrs doing some work trying to get my wifes vehicle running. Well guess my foot was not kept warm enough and I ended up with frostbite on 2 toes. Now the ortho Dr has decided that it has to be Amputated because it got frostbite so easley. So I'm setting in the hospital getting Iv antibiotics and wating for Fri when I will finally get some relief. So happy New year's to me. 2018 looks like it's going to start out pretty good.
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Post by snowyh on Dec 28, 2017 12:17:20 GMT -7
So it looks like you got a hand from Mother Nature? Best of luck to you with your upcoming surgery. Please keep us posted.
Helen
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Post by topher70 on Dec 29, 2017 20:58:45 GMT -7
Made it thru surgery with no problems. When I came to I started crying years of joy. My level 8 constant pain is gone. It is the first day pain free, in over a year, except for the incision site. Which so far has been controlled with motrin. I am just so exstatic I can't stand it. My life has made a 180. Even the ortho Dr that was refusing to help, preformed the surgery. He even told my wife afterwards that he fully understands now why I wanted to remove it. And he said that this was best for me and he should have listed a little better. New year new me.
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Post by snowyh on Dec 30, 2017 3:16:37 GMT -7
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Post by stonecutter on Jan 3, 2018 11:33:06 GMT -7
Wow. This story is crazy! So - you had to freeze your toes to illustrate some of the future problems you'd have faced? And then they amputated next-to-immediately? Wow - just wow.
I'm glad things are looking up for you. It's really unfair the hoops they made you jump through to get to this point. Anyhow - onwards my friend!
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Post by topher70 on Jan 15, 2018 5:27:39 GMT -7
Yep. Froze my big toe, middle and third. Was out all day Tue in 17 degree weather and didn't even know it happened. Took my cold weather boots off and they were froze solid, wife about flipped out when we seen them. All other digits were fine. Ortho Dr said it was from lack of circulation and feeling from the burn injury and he should probably take it off now instead of continuing the limb salvage. Went to Er on Wed and LBKA done Fri afternoon, because he was booked solid on Thurs, doing hip replacements. Got released on Sun morning just in time to spend new years at home. Seen him this Fri for 2 week follow-up. He removed the staples and then I went to see the prostitist the same afternoon and he set me up with a shrinker sock. So far pain free and happy. Do a follow-up for a prosthetic fitting in 2 weeks.
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Post by stonecutter on Jan 15, 2018 8:02:49 GMT -7
Can't tell me how glad I am for you when I see "...pain free and happy." in your post.
Heal up, because soon comes the fun part. Go easy on yourself. When we are making progress it's easy to overdo things and suffer a setback.
Keep us informed as to your progress.
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