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Feeling Stuck in Limbo

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Since day one of my accident every one has down played my injury telling me that I was going to be fine. No one has ever mentioned to me that an amputation might be a solution to my problem. I walked into my surgeon office and told him I am done trying to fix my foot. My family and boyfriend are baffled on why I would want the surgery. They saved my foot and left with me a useless limb. I am stuck in limbo not knowing what to do. Should I have the amputation because I want to move on with my life. My family and bf do not discuss this as an option they seem to think I would be worse off with a prosthetic. I dont know why they seem to think. I am more disabled by keeping my my foot. I am unable to use my foot or bear any kind of weight for longer than a few minutes. I wake up in the mornings not wanting to get out of bed. I worry what the future holds for me. I have held a job that I can not stand so that if I decided to have the procedure it will be covered. I feel like if I dont have the amp, I will never be able to get on with my life. I just want closure and relief. Being in pain every minute of every day wears me down to the point I dont know how I am going to be able to rebuild my life. I do as little as possible every day so that I can make thru a day. I am not a lazy person, I am a person in pain.

Jenn :(

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Well I can totally understand living everyday in constant pain...and limiting the things you do because the pain just beats you down..I am an above knee but this all started for me 7 years ago when I was diagnosed with cancer...initially they did a limb salvage which is where the constant pain started--I had 7 surgeries within the 6 years after the initial limb salvage sugery all to help solve the pain issues--it never happened...I didn't really have a choice with the amputation because it happened because of a recurrence...but I can do more things now and the pain--although I still have pain it is NOTHING like it used to be so that is a relief! I think it is really hard for our family members to understand that amputation can be a good thing. They just see the "shock" of that decision. Maybe have your mom and boyfriend go to an appointment with your doc and have explain the "bonus" of amputation. Bottom line though is it is your decision and your family memebers will get used to it! In my case amputation is NOT easy but I am still living each day and probably get more done than I used to. My surgeon explained the amputation to me as this...he described my leg that had huge limitations and constant pain as an anchor and the rest of me as the boat...he said let the anchor go and you can sail away...Like I said I didn't have a choice in the matter but my anchor has been left behind :) Good luck to you and to your decision!

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Jenn,am I correct...do I remember you trying to get your family and bf to go along with your consideration of an amputation back a while ago? If so, have you tried just talking with your doctor and making your own decision?

People who have not been in a position to consider an amputation as the solution to a problem tend to have a very, very hard time understanding where a prospective amputee is coming from. People who only know what having a functioning limb is like can't get their heads around the idea of having a limb that does nothing but cause pain.

Just as an example, my one "gripe" about my prosthesis is that I have no real degree of motion in my ankle...other than that, my artificial limb is much, much more useful to me than my "real" leg had been for many, many months before my amputation. My brother-in-law was pretty good about my amputation in general...but he repeatedly discounted my problems with my nearly-stationary ankle. Then....he had a foot injury which landed him in a brace which effectively "froze" his own ankle. And then...gosh! He got it! He now understands what a genuine inconvenience a rigid ankle can be. He wouldn't have reached that point if he hadn't experienced it himself.

Your family and friends will never fully understand why you might want an amputation. (Heck, some doctors even think that a malfunctioning but "living" limb is an improvement over a prosthesis!) Again, in my own case, I talked to my doctors, thought it over for myself, and made my own decision to amputate...THEN I told my family and friends what the decision was. Some of them were pretty shocked...all of them felt sorry for me...but all of them did what they could to be supportive once they realized that my decision was firm. I only lost one "friend" after my amputation...she just couldn't deal with my suddenly "becoming a cripple." She never got to see me fully recovered and living my life. I feel sorry for her.

My boss told me, a few years after I lost my leg, that she had been "stunned" by "how relieved you sounded when you called to tell us your decision." I could only reply that I was,indeed, relieved, as it was an end to the repeated failed attempts to fix my broken foot. She nodded and said "well, it seems to have worked out well for you."

That may be what you have to hope for...that your family and bf will recognize the improvement in your life once you're mobile and no longer in pain. It is a serious decision, and you need to be serious, mature, and determined in making it...if you feel you need the approval of others, then you may not be ready to make the decision.

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Hi Jenn

I can understand somewhat your position with your family ... I think historically people have seen amputation as a last resort and many still view it as the 'worst thing ever'. Myself, I don't see it like that, both my legs were amputated b/k when I was young in an accident and there wasn't any choice ... things turned out ok and I lived a pretty regular life, but when I started to have problems with one of my stumps some years back and there were suggestions of re-amputating, most people I told looked pretty shocked and surprised I was considering that, including some of the healthcare professionals I saw! Must admit that when the idea was initially presented to me, was not really ready, although think I always knew it was on the cards but it took me about five years to make the decision, I decided to try and solve the problems prosthetically if I could, it worked on and off for a bit, but my mobility was deteriorating and I knew people with higher levels of amputations were more mobile than I was, so finally decided to go for it. As with anything though, nothing is ever certain .... amputation may not necessarily bring you the closure you are looking for, its very much ongoing with the prosthetic side and can change for people over the years .. everyone is different and initially you may think you have swopped one pain for another, for most of us it's quite a process to get walking again and does take time(though usually well worth the effort).. that too can take getting your head around.

I think probably your family and boyfriend are just worried about you and maybe don't have that much knowledge about prosthetics and living as an amputee, most of the people around me only knew me as an amputee but I think were just concerned that I'd end up in a worse position if the op went wrong or whatever, so maybe thats the way your family and boyfriend feel. Maybe you can help them there, by gently, introducing them to information, show them websites like this, may be visit prosthetic centres and speak to other amputees. At the end of the day though, its always your decision and you do need to weigh up the pro's and con's ..... I've had so many hospital appointments over the years and usually go alone, but when I was thinking about the surgery dragged my husband (who's not that keen on hospitals)along with me ... I think initially I would have liked someone to make the decision for me ... he was very good though (much better than I would have been, had the situation been reversed) and every time I asked him 'what he thought' he would say "its your decision" ... and I think thats the thing its your body so you have to decide what you think is right for you .... I found once I'd made the decision everyone very supportive.

Ann

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Hello Jenn,

I am a Left Below Knee Amputee due to a motorcycle accident on valentine's day in 1981. I was in the hospital for over a year. I broke my left leg in 5 different places and also crushed my left ankle in the accident. The Doctors saved my life and I also had lots of internal injuries due to the accident. I was in shock trauma for almost 5 weeks. The ankle became infected and my foot wouldn't heal. So after a year I elected to amputate below knee. The doctors wanted me to save my foot, But I didn't want to put my life on hold for another year. Some of my family understood and then some didn't. I talked to my physical therapist and she told me that a below knee would be the best way to go if I was going to elect the amputation. We talked about this for a couple of days. Before my amputation I could only walk for about 100 feet then I had to sit down. if you do decide for elective amputation below the knee read up on the Ertl procedures. There are many amputees here who have the same issues.

I'm am so glad that I had the surgery and within 3-4 months I was doing everything except running and biking. I lost a lot of muscle from the accident. The doctors told me that I would always need a cane to walk with. I kept it until I got my first prosthetic and then put it away in the closet. I also had to go to physical therapy in order to learn to walk properly. I went 4 times to therapy and the therapist told me once I could walk up and down steps without a handrail that I would have to keep coming back. I had 4 appointments with him and I haven't looked back.

Most people that don't know are really surprised that I have a prosthetic. I wanted to tell you that this is your life and it's all up to you in what you want to accomplish. If you are determined you will do just fine. The only issue that I have is that I broke my hip really bad and that's the only thing that holds me back.

Jerry

P.S. Here is something for you to read. http://www.amputee-coalition.org/aca_first_step.html

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I guess my family and boyfriend believe that my injury cant be as bad as I make it out to be. They dont believe that having the procedure will help my situation. I feel so alone and I really dont know if I will ever be a 100 percent on having it done. Thank you guys for listening. I was having a tough week.

Jenn

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I have to agree with everyone else that your life will probably be better after an amputation. I was faced with the same thing when I injured my foot. The nurse and all my family told me that amputation would be far worse. I went along with them and saved my foot. There was little pain, but my life was going to be on hold for up to 24 months of surgeries which would restore a perfectly useless foot. I had no heelbone to stike the ground. How would I walk and stand without this? No one could answer that question. I told my wife that I would go along with salvaging the foot until they wanted to start carving up the rest of my body which occured 3 weeks later. The plastics doc wanted to do more surgery to remove muscle from my abdomen and skin from my glutes to put into my foot. I just plainly stated that no we would not be doing that. I would rather have an amputation than go through all that. His jaw literally dropped to the ground. He couldn't believe I would opt for that over keeping my foot.

I went to my ortho surgeon a couple of days later and told him my decision. He said it would be the best outcome. He told me it was a decision I had to make. He amped me the next week and I've never looked back. I don't regret it a single bit. Even now, I haven't been able to wear my leg for the past 5 weeks because of some minor surgery behind my knee. It has affected me in a major way, but it is still better than what I would have had with my own foot. I still have a couple of weeks more without my leg. I will make it. Do I wish I had my leg back? Your damn right I do. My prosthetic leg that is. LOL

The decision has to be yours and what you feel is the best for you. All the others will have to live with your decision. You can show them plenty of videos of amputee athletes who are very active with their prosthetic limbs. Some are more active than most bipeds. You will be able to do what you want to do.

I wish you could have been at our conference this past August. There were over 300 amputees there of varying levels. Some were quads meaning that they had lost parts of all four limbs. You could not have seen a happy bunch of people. There were no pity parties. There were those sharing their experiences as amputees. Most would admit that their lives were much better following their amputation. I know that I'm a better, more compassionate person since becoming an amputee. I would NOT take my leg back if it meant losing all the experiences I've enjoyed since losing it.

I agree with Jerry that you should look into the ERTL procedure of amputation. Most of those who've had that form of amputation are much more successful with a prosthesis as they are able to bear more weight on their stumps. They don't have as many fitting problems.

Good luck on your decision.

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i feel like i was in a similar siruation to you, and like others on here, had to ask for an amputation, & it was the best thing i ever did. since then i got my life back. i had a m/c accident in 85, classic m/c injuries of 2 broken legs, but one was low down & compound, well i got into hospital & to cut a long story short, they put in the plaster too tight, whch caused a pressure sore on my heel, after many operations on the leg, i was left, like you, with a leg that was useless, i couldn't wear shoes & it was hard in the winter to get my ffoot covered. so i asked the surgeon to amputate, after that i got the prostheses & got back on my motorcycle again!

so, it worked for me, maybe it will work for you, only you can be the judge of that.

hope this helps a little

maggie

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Nothing in life is a "sure thing." There's always a chance of something going wrong, no matter how major or how minor. If you're waiting to feel "100% certain," you're right...you will most likely never reach that point. What you CAN do, however, is weigh your options carefully and decide on the "best possible chance for improvement" in a bad situation. For many of us, losing a painful and useless limb was indeed that best possible chance for improvement. It was for me. This is how I went about making my decision:

I'd had recurring problems with infections following surgeries on my foot, which had kept me ill and weak and unable to fully recover my health...so losing the diseased tissue and stopping the repeated surgeries would leave me in better shape than I was. After many attempts to try to repair my broken foot, I developed a bone condition called Charcot foot, which caused large amounts of very brittle bone to grow around the fracture-repair site. It kept breaking off and kept me non-weight-bearing on that foot, and it also punctured the sole of my foot and let a vile strain of MRSA into my body, which came close to killing me (twice)...without the foot, there would be no more concerns on that front.

I had some concerns because I've never been any good on crutches...so I had to think about options in case I couldn't adjust to a prosthesis. My decision process there went like this: everyone says I should be able to succeed with a prosthesis...if that works, I'm in better shape than I am now. If it doesn't work, I can try other styles of crutches and perhaps find one I'm good at using...if that works, I'm in better shape than I am now. If it doesn't work, I do know how to get around well in a wheelchair, and there are electric scooters which could work for longer distances...in which case, I'm still in better shape than I am now.

There was a chance I'd still have some problems with pain, but they told me that there was more of a chance that I'd be pain-free...if that was the case, I'd be in better shape than I was. If I still had significant pain, it would at least be coming from nerves in an otherwise-healthy limb...which still put me better off than where I was with a broken foot that kept re-breaking. All in all, the best possible chance for improvement in my particular bad situation was for me to have a below-knee amputation. Was I 100% certain that it was the right decision? No. But there were more possible GOOD outcomes to the amputation than there were in keeping my useless, painful foot. I would guess that I was probably somewhere between 95-99% sure of my decision. And once I'd made it, I committed to making it work.

THAT'S the main thing...you must commit to doing all that's necessary to bring the best out of whatever decision you make. And it must be YOUR decision. Good luck with it!

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My biggest fear is that I worry about what others think of me. I was always concerned about the way I looked before. I hate to admit it but its true. I worry that my bf/fiance` will leave me. My thinking is that I am not the same person he proposed to almost 4 years ago. I haven't been able to commit to a date because planning a wedding seems exhausting when your in so much pain. I can barely hold my full time job without wanting to quit every day. My biggest fear is health coverage. I am extremely ill feeling now and I have to maintain my health coverage because at any point the pain becomes to much for me to handle I get sick. I no longer have the freedom or motivation to do anything differently. I am trying to make it day by day. I cant make plans for the future because it all depends on the amount of pain I am in.

Jenn

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My biggest fear is that I worry about what others think of me. I was always concerned about the way I looked before. I hate to admit it but its true. I worry that my bf/fiance` will leave me. My thinking is that I am not the same person he proposed to almost 4 years ago. I haven't been able to commit to a date because planning a wedding seems exhausting when your in so much pain. I can barely hold my full time job without wanting to quit every day. My biggest fear is health coverage. I am extremely ill feeling now and I have to maintain my health coverage because at any point the pain becomes to much for me to handle I get sick. I no longer have the freedom or motivation to do anything differently. I am trying to make it day by day. I cant make plans for the future because it all depends on the amount of pain I am in.

Jenn

I have much the same experience as the other posters. I wish I had lost my leg earlier, I would have suffered fewer surgeries, less damage to the rest of my body and an earlier recovery. Believe me, from the amputation date forward is the beginning of a new life. You sound pretty down, I think you'd feel better once the decision is made. As it sounds like you're in the USA, I can't comment on the mechanics of how the financials work, but that aside, and if that can be covered, I think you would benefit from going ahead and getting it done.

Just my opinion and I'm not qualified to give advice, but this is an amputee forum and I'm an amputee saying it how I see it.

If your BF would leave you, then he's not who you need, consider that a lucky escape. If he loves you, he'll want you to have what's best for you and whether you have a foot or not wouldn't change that.

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OBL is right. If your BF leaves you because you have a leg amputated, then he doesn't really love you. Do what is right for you. OBL also said that the date of the amputation was the beginning of a healing process. My life got back on track quite quickly following the amputation.

You're sounding down and out. Don't let depression overtake you. Make and decision and stick with it.

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OBL and Neal are absolutely right on the "my bf may leave me" front...if he does so, you're not losing anything special. But think of it this way: He's stuck with you for four years of illness and agonizing pain. He's stuck with you while you've had to put your life on hold due to your leg issues. He's stuck with you while you've been debating an option that will, indeed, alter your appearance. He sounds like he's, at the very least, a patient fellow. Give him a chance to try and live up to all that promise...if he does so, you know you have a fellow who loves YOU, not your leg.

Appearance is honestly not the most important thing here. There are some very realistic looking prostheses out there, if you want that. Mine looks so good that I've literally had people not know which of my legs is the "fake." But there's also a sort of elegant simplicity in a leg that says "prosthesis" loud and clear. You can do whatever you want to when it comes to "customising" the look of a prosthesis.

It's all do-able, once you decide what you want!

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