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Mary Farquhar

When to stop trying.

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Hi All!!

Many of you know my story, if you don't I have lots of threads on here. LOL....I received my new prosthetic, and had to go back for adjustments. My prosthetist cut the prosthetic down, and opened the socket a bit more as it felt so tight. I brought it home and it feels so comfy, and love that it makes me even but I still feel that darn spot. It's right on the scar tissue, it becomes swelled a bit. It's not a "bad" pain but more of a discomfort. Walking on it for a long period does cause some pain. I am not sure when to just call it quits?!! It's only 2 weeks I have had this new prosthetic and I haven't really been able to wear it as it needed adjustments. How long should I try it before giving up?

Mary

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Hi All!!

Many of you know my story, if you don't I have lots of threads on here. LOL....I received my new prosthetic, and had to go back for adjustments. My prosthetist cut the prosthetic down, and opened the socket a bit more as it felt so tight. I brought it home and it feels so comfy, and love that it makes me even but I still feel that darn spot. It's right on the scar tissue, it becomes swelled a bit. It's not a "bad" pain but more of a discomfort. Walking on it for a long period does cause some pain. I am not sure when to just call it quits?!! It's only 2 weeks I have had this new prosthetic and I haven't really been able to wear it as it needed adjustments. How long should I try it before giving up?

Mary

Sorry to hear of your pain and discomfort, Mary. Can this scar tissue be surgically removed? Is the bone pushing this tissue against the socket causing pain? Can this pressure be relieved through socket modification? I hope there is something that can be done to help you!

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Mary, any type of prosthesis is going to need adjustments...and you're going to need some time to adjust to it as well. It sounds to me as though this prosthesis is a genuine improvement over your last one...am I hearing that right? If so, do try to give it some "break-in time"...since anyone, with any style prosthesis, is going to have the occasional day when their arti-part is going to feel somewhat uncomfortable, I'd suggest at least giving it enough time to see if it continues to improve now that there have been adjustments to it. If you can wear it for longer and longer periods of time before feeling discomfort, you may have a real "winner" on your hands (or on your foot in this case)!

If the discomfort does not continue to diminish, and if your prosthetist reaches the point where he says that all possible adjustments have been made, then you have a decision to make. (I won't say that you're "back to square one," since you at least know now that a better feeling partial foot is possible.) Then I'd suggest talking to a doctor about some of Freddy's ideas on whether there are slight modifications that could be made to your foot. If that turns out to not be an option, at THAT point I think considering a higher level of amputation comes back into play.

I know it seems like you've been on this trek forever, but while I'm a happy BK amputee and would certainly encourage anyone with severe, uncontrollable foot pain to look into that option, I'd also be reluctant to advise major surgery if you're seeing the beginning of real improvement with your partial-foot.

Keep us posted on how you do with the new prosthesis....... :smile:

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I agree with Cheryl I think it is probably too soon to be sure. It always takes time to break in a new leg (I got one two days before we flew to Canada so took the old one as well although it had its problems so that I could keep changing legs to vary where it hurt). If over time you are seeing small improvements in comfort then it is worth persevering to see if they continue, it may be that with further adjustments you it will work out. Whilst I am someone for whom an elective bk worked out well I know that it is not always the best option and you need to be sure you have tried everything else.

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I personally would give it alot of time...this may be what you are looking for. Like the others it will take some time to get comfortable. If that doesn't happen, then is the time to decide the next step. :smile:

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Mary, I have one spot/scar where I always had a problem with a sore spot. Over time, my leg guy and I have come to the conclusion that particular area will always be tender for me and a "relief" in that area.. In my accident, my foot was severed and the doctor reattached it. That particular area is where a large pin was screwed into my tibia. He has had to adapt every socket so that scar doesn't get sore or irritated. It is close to the end of the tibia and when extending the leg, it can get very sore if the relief isn't made in the socket. I agree with the others, just give it a little more time, and then, when discussing it with your leg man, be very precise on the exact spot of the soreness. Possibly you can both come up with something that makes the socket work well for you.. It is always a process, I think...

Good luck.....

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Thanks for all the replies.....I will give it more time, I have only been able to wear it for 20 minutes tops. Ya it's comfy when I am just standing. LOL....soon as I start to walk then it becomes uncomfortable. Right away I feel the spot, then it gets red, swells and hurts.

I am going to continue on until my prosthetist says ok, I have tried and that there is nothing else can be done. I know that this new prosthetic is most likely the last, because before starting this new prosthetic he verbally told me he really doesn't know what to do. With this new prosthetic, he positioned my foot differently while casting, hoping that spot wouldn't have as much weight bearing, but unfortunately I am weight bearing on it. For now, I will keep trying, but with this spot hurting I still won't be able to go back to work, and I am still limited in my activities. I pray this prosthetic will turn around, and surprise me!!

Mary

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Higgy....it's hard for me to explain where my pain is, but I will try. I lost my foot due to trauma so I had a skin graft, the stitches went in a circle of my stump. So the spot is right where I put the weight bearing. Not underneath but to the side. Soon as I walk that spot moves. You would have to know what my foot looks like. There's no way to avoid this spot. The pain is on the scar tissue, it becomes swelled, and when I push on that spot it hurts inside. I think I finally know why I have this pain. I never had this in the past. I just started to see the swelling. So the more I walk on it, the more irritated it gets. Then the pain starts. My new prosthetic is causing it to swell even more, guess because it's more of a tighter fit. This week I plan to go out in my new prosthetic and test it out.

Mary

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It sounds very similar to mine, just slightly more to the side.. mention the possibility of creating a relief in that area. I am no CP for sure, but just because you ask a question, it doesn't mean you are trying to be.. Sometimes, you just never know where a conversation can lead... :wink:

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Higgy,

My prosthetist put lots of cushioning in this new prosthetic, and at the beginning he positioned my foot differently when casting. I do feel more comfy inside but unfortunately I can still feel that spot and that spot swells.

I am testing it out this week....trying to walk a lot in it. In my old prosthetic the more walking I did the worse my foot felt, so I really want to see how it will be in this new prosthetic.

You mention that you have a spot too, does it hurt you if you keep walking in your prosthetic?

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I have tested my new prosthetic for 1 week....have been wearing it on going. The end result is I am in pain. My spot was still hurting and my stump where I put the weight bearing was a bright red. Today it is no longer red but still sore. Maybe I over did it? Not sure what to do next, do I keep trying this new prosthetic or give up? Just don't want to stay this way if I won't be able to walk far, and be in my prosthetic for full days. Does anyone have any advice?

Thanks!!

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Mary,within your brain and deep in your heart you have already taken your decision to make a BK amputation.Go ahead,it's no more worth trying and trying and trying with your pros.You have to come to a final point of no return;what you are actually doing is no life anymore,it's suffering with a decision already made and now you have to look for your future with a good quality of life.

Joachim

LAK+LAE

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Joachim......I believe you may be right, my decision is already made?. I guess I am waiting on my prosthetist to tell me there is nothing more that can be done before I make my decision. It is up to me in the end and not the professionals. I am not living my life as I want to be, and my life is passing me by. I have to just do what I have to, to get my life going again! I am just scared.

Mary

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Mary, I think I have only one more suggestion/question for you: when you got the new prosthesis, did they give you any instructions on how to go about "breaking it in?" If they did so, and if you followed them, I think you may be zeroing in on what your next decision will need to be. If they did NOT give you any advice on "breaking in" the prosthesis, then I'd suggest that you go back to your prosthetist, explain what you've been doing and what the results have been ("I'm still in pain and getting redness on the sore spot") and see if they have any suggestions on something you could do differently.

If you've not talked with them about trying to build in a "relief" for your sore spot (similar to what Higgy was talking about), you might also want to try that. If they tell you that they don't see a way to build in a "relief," that's another indication that you're coming closer to making a decision.

The ultimate decision really does have to be yours. Yes, it's a frightening notion, but there are many worse things than going through an elective amputation. As a BK myself, with my own "tender spot" on my stump, I do know that building a "relief" into a BK prosthesis is very, very do-able. So that might be something else to weigh as you look at your decision.

I wish you the very best as you work at sorting this all out!

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Mary, I think I have only one more suggestion/question for you: when you got the new prosthesis, did they give you any instructions on how to go about "breaking it in?" If they did so, and if you followed them, I think you may be zeroing in on what your next decision will need to be. If they did NOT give you any advice on "breaking in" the prosthesis, then I'd suggest that you go back to your prosthetist, explain what you've been doing and what the results have been ("I'm still in pain and getting redness on the sore spot") and see if they have any suggestions on something you could do differently.

If you've not talked with them about trying to build in a "relief" for your sore spot (similar to what Higgy was talking about), you might also want to try that. If they tell you that they don't see a way to build in a "relief," that's another indication that you're coming closer to making a decision.

The ultimate decision really does have to be yours. Yes, it's a frightening notion, but there are many worse things than going through an elective amputation. As a BK myself, with my own "tender spot" on my stump, I do know that building a "relief" into a BK prosthesis is very, very do-able. So that might be something else to weigh as you look at your decision.

I wish you the very best as you work at sorting this all out!

Joachim......I believe you may be right, my decision is already made?. I guess I am waiting on my prosthetist to tell me there is nothing more that can be done before I make my decision. It is up to me in the end and not the professionals. I am not living my life as I want to be, and my life is passing me by. I have to just do what I have to, to get my life going again! I am just scared.

Hi Mary

Once again today, I am agreeing with everything Cheryl says. LOL.

Breaking in a prosthesis is quite important, even as a b/k, but if you have done it gradually and followed their instructions and its not working go back and talk to your people. I was told right from the start of being an amp., if the prosthesis doesn't fit right ... go back, and back and back.... and thats what I generally do, even though I probably drive the prosthetists crazy, but for it to work for me, it has to be exactly right. If nothing works though then you have to have the conversation of 'its not working, where do I go from here".

I was in that position myself a few years back, I had tried about almost everything I could ... but from my experiences, your people are not going to make the decision for you ... you have to do that yourself.... so you need to weigh up the pro's and con's ... likewise no one can absolutely guarrantee whether you are doing the right thing or not, there are risks whatever we do, and even as a b/k, as you have prob read on here, people still sometimes experience problems..though as an elective b/k you can hopefully avoid some of the problems and have the optimum amp.... And don't worry everyone is scared, even as someone who'd lived quite happily as an amputee for many years, having that little bit more off terrified me.

Ann

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When making my new prosthetic my prosthetist positioned my foot differently when casting me for this new prosthetic, so that my "spot" wouldn't be getting the full weight when I walk. In the past my spot would get the full weight bearing. So, I have been back a few times to see my prosthetist to make adjustments. He told me to walk in it to break it in, but that's all that was said. So last week I walked a lot especially from Thursday to Sunday. Already by Saturday my spot was hurting and my stump was a bright red. I don't feel like it needs to be adjusted though. It feels ok inside, it's just that spot that is hurting. Even though they positioned my foot differently, I still feel that spot. If this doesn't work I don't see any other way they can build in a relief? I guess it will be up to my prosthetist to tell me. I will call them today and go back to discuss what I have been doing.

Thanks Cheryl and Ann for your input.....it's so much appreciated!!

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Mary hello :)

I just read all of the posts and I hope you are doing well and I am sure glad to have a place to come to and get some advice and input on the subjects you mention. I am sure you will make the right choices. People on here are so caring and compassionate. Hang in there and I am thinking of you :)

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Thanks Dreamygirl and Maggie!! I am still trying my new prosthesis. It's been around 6 weeks now. I am getting tired of returning to Hangars for them to fix the noise on the prosthesis...so annoying! I have been wearing it a lot and still the same outcome, that spot starts to hurt. I will continue trying it. I feel like I don't know which direction I am going in.

Last week went to my prosthetist and he asked about my spot, told him still hurts. He doesn't know what else to do. I do have an appointment with my Orthopaedic Dr at the end of January. I really don't know what I am going to do? Do I try to work, or do I go take a course or just go for the bk....I just don't want to go ahead and amputate to still have problems etc....then I will just stay like this! Never thought my life would be like this....trying to make these difficult decisions.

Thanks for listening!!!

Mary

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Mary, sorry you are still having problems and they can't seem to sort them. It must be so frustrating being in limbo like you are not knowing how it is going to be sorted. Hope you appointment at the end of January helps.

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You will make the right decision. It's a hard one and no one can tell you exactly what to do. I just can't imagine being bk would be worse than what you have been dealing with. Hope your appt in January goes well.

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Thanks Marie, I do hope to make the right decision?! I was able to go for a walk the other evening, and I felt that spot but it was hurting that bad. This is what makes it difficult to make a decision. My pain is tolerable, not like I need pain meds or something. At times it is worse then others though. The thing is do I want to be limited due to the spot? If I had a bk amputation maybe I wouldn't be so limited?

Mary

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I can't answer as to how limited you would be. Most bk's are pretty active. I can tell you what I did today. Worked (volunteered) from 9:00 to 11:00 at St Vincent dePaul pharmacy, which helps the needy. Worked my Thursday 2 hr Weight Watcher's meeting from 2:00 to 4:00. Had an appt with my counselor at 4:30 and got home about 5:45. Pretty busy day. I find there's very little I can't do. I can't run, but I wasn't running before. But I can walk 2 miles. Could probably walk further if I wasn't a little bit lazy. I can clean my house, grocery shop, Christmas shop, keep my grandkids. That's the one that kicks my butt! I have walked around New York, in Central Park. I feel I can pretty much do what I want to do.

But your pain is your pain, and you are the only one that can decide whether or not to live with it. Is it so bad you can't bear it? No one can guarantee you perfect results. Some days are not as good as others. But the bad days are few and far between. And the bad days aren't really painful, more uncomfortable. I'm not an elective amp and I wouldn't want to have to make that decision. No one wants to face that. Listen to what those here who are elective have to say because they are the only ones who can really speak to the issue. I don't think there's one here who regrets it. Life is good. Get the most you can get out of it either way you decide.

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