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cherylm

Well, this is something new for me.............

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Yes, gang, I know that phantom pain IS "the real thing," but I'm just trying to differentiate between phantom and stump pain issues here.

I have had only one or two episodes of phantom pain in my entire amp-lifespan. Yes, I know just how lucky I am that this is the case! I even lost my phantom sensation after only a year or thereabouts...for about five years, the only phantom anything I've had to deal with is the sensation that my big toe is still "living" down in my footshell, disconnected from anything else. (Weird, but harmless.)

However, I've been dealing with a truly painful spot on my stump for probably about three months now. It's slowly been getting worse...it was minor at the ACA Conference, just kept me from spending too much time on the dance floor. But this sore spot just keeps growing and becoming more and more painful. A couple of weeks ago, I finally took it to my doctor. He looked puzzled by it, said it was acting like a neuroma but didn't look like anything he'd seen before, and made a referral for me to see a surgeon for an opinion on (A) what it might be, (B) whether it should be removed, and © should I have a new socket to try and accommodate it. It would be two weeks before the surgeon had an opening for me, but I figured I'd lived with it this long so I could tough out another two weeks.

My two weeks was up yesterday...and yesterday morning, the surgeon's office called: Doctor was out ill and they had to reschedule me....for July 27th. They did suggest that I call my doctor and see if he could refer me elsewhere so I could be seen sooner, which I did...he put in a request to refer me out-of-area (oh, the joy of the HMO!) so I HOPE that something earlier than July 27 turns up. Still waiting on that one............

In the meantime, I've gone from just "real" (stump) pain to "real" AND phantom pain. I once again have the sensation of a full left leg, and it's getting zapped and pulled and twisted like nobody's business. Things itch, things burn, the ever-popular "lightening zaps" pop up every so often. It's waking me up at night, and I occasionally let out a "yelp" when a zapper hits me. It's lousy!

If I were at all able to use crutches, I'd just take the leg off and make my way around one-legged for a while, as the "real" pain is at its worst when there's pressure from the socket. However, in addition to my fabled klutziness on crutches, I have strict orders from my ophthalmologist to NOT use crutches and/or hop with a walker (which I can actually do pretty proficiently), because the strain on my upper body can cause my retinas to bleed, taking me back to my days of being one-legged and blind.

Okay, I guess I've griped enough...I just want to find out what this odd "acts like a neuroma but doesn't look like anything my doctor's ever seen" thing is, and I want to have a plan and a timeline for making it go AWAY! After being basically pain-free for over six years, I've gotten used to it, and I miss it now.................... :ohmy:

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Cheryl - I am so sorry you are having to go through pain again and that the doctor has not been able to get you in any sooner. Since it is worse when you have the socket on, do you have a wheelchair or could you get insurance to either rent a wheelchair for you or get you a wheelchair that you could use while this is going on? Crutches or a walker are not the answer for you it sounds like... hang in there.. hopefully someone can figure this out for you soon.

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Hi Cheryl

Very strange you should post this right now, as I have been experiencing very similar, although for some unknown reason this week it lessened and felt more back to normal, but am being very careful with how much I walk.

Luckily, I had a prosthetics appointment and had x rays of leg and back taken, because it was explained it could have been referred pain from my back, though what showed up to be what I think was the main culprit, new spur from the Fibula, which I think is new. We are going to try a different kind of liner which will better accommodate the boney areas under the graft, so am hoping that works, also am using a new night sock, which I am sure helps.

Fingers crossed they can sort it for you Cheryl, hopefully its just a 'blip' caused by the pressure from the socket or something simple. Appreciate how you feel though, especially about 'having a plan and a timeline", know I always want everything sorted, yesterday.

Ann

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Flip, I have a wheelchair and I've been using it more and more recently (and am considering using it permanently until my next doctor's appointment). It works pretty well as long as I'm just rolling around my apartment complex...the building and grounds are very wheelchair-friendly. The problem comes when I need to travel somewhere...my car is very small, the wheelchair is very large and heavy, and loading it even with two legs is problematic...loading it one-legged would be pretty nasty business.

It's odd...I've never minded using the wheelchair in the past...when I was still working, it was often a relief to retire to the wheelchair at the end of the day. But the thought of having to use it again long-term just irritates the heck out of me!

Okay...okay...I'm really going to stop griping now!

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Thanks for the good words, Ann...you must have been posting while I was replying to Flip. I hope they get YOU sorted out soon as well!

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Thanks for the good words, Ann...you must have been posting while I was replying to Flip. I hope they get YOU sorted out soon as well!

I still think its amazing that we can be communicating at the same time from so many miles apart.

I have the same problem you mention Cheryl with the chair and the car, when am not wearing one or both of prostheses not able to get to the boot, taking the chair apart and hauling the bits across me and the steering wheel to put the bits in the car unsecured is not the best way, and every trip a major work out in itself. I have seen a very light weight chair that kind of folds up very neatly, but can't remember who manufactures it, if I do will let you know but the other option I have been thinking about is roof storage where you have an auto control where it lifts it up and lowers by drivers door, though very expensive, and something I can't afford at the moment. Like you though, I would probably feel the same about using the chair full-time long term, as I find it much harder work, because the rest of the world just isn't geared up, well not here anyway.

Hopefully, though it won't come to that, yet, for either of us, got to be thinking positive and am sure it will be something that will get sorted, but hope they get you sorted out soon too, Cheryl. Take care.

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Hi Cheryl,

I’m sorry to read that you are having a bad time at the moment & I hope that you get sorted out sooner rather than later.

I have got nothing to add to what’s been already written, except to share one of my experiences I had a few years ago.

To start with I do get phantom pains but mostly it’s just a tingling /pins and needles nothing to cause any concern, however on the odd day, high humidity, thunderstorms, feeling down dehydrated ect ect I do get hit hard with them, at the worst moment I am talking about dropping to the floor with pain, but that’s only a few times a year so its not an issue for me.

However a few years ago I developed a nerve bundle that seemed to grow overnight that started giving me some serious grief, not only that but for some strange reason it triggered massive waves of “phantom” pain as well.

It got to the stage where I didn’t know whether it was real or phantom (yeah strange I know)

I would sit there with out my leg off pressing really hard with my finger on certain spots on my stump just to see if the pain level increased , once I increased the pain level and found the spot I would “play” around with it (prodding and poking rolling around) it hurt but the other phantom pains stopped for a while , (I know that sounds daft but that’s what happened) after a while the phantom pains would start again , off come my leg and five minutes of pressing on the spot seemed to stop them again . I should go on to say that whilst I was pressing the spot the pain level went through the roof but the phantom pain stopped.

It made no difference whether the leg was on or not (pain wise)

For me I think it was about being in control when I pressed the spot the pain level went up but I was in control of it, where as with phantom pain I always feel that I have no control over it.

Perhaps I am bit damaged in the head I can’t really explain it any better.

On the good side once they operated (in and out in a hour) I was totally fine , back to normal , however I do know that it will most likely “reappear” sometime in the future ,and the next bit of cutting about might not be so successful.

I know that this is no use to you what so ever but …………………………………….

Anyway take care & I hope you get sorted soon ……………………..Mick

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I'm sorry you're having to go through this Cheryl. I know how debilitating it is to have the real pain. I still am not plagued with bad phantoms. I always have the sensations. They don't bother me at all. I will get pain when I've been hard on Stumpy or sloppy with socks.

I think I would have seen a prosthetist first. They see almost everything to do with amputees more often than most docs. With that being said, my prosthetist could not tell me a long term solution for my infected hair follicles. I found that info at the conference in Irvine, came home and did something about it. That surgery has been one of the better things I've done. No infected hair follicles since Sept, 2010. WooHoo!!!

Good luck with your doc appts. I've been paying their Porsche payments myself.

Neal

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Thanks gang! I appreciate everyone's tips and ideas. This morning, I played around with stump sox for a while and came up with an arrangement that takes some of the pressure off the "growth." The downside is that it pushes me so far up in the socket that I'm off-balance and have an aching hip as a result.

However............an aching hip feels pretty decent when compared to an extremely sore and tender spot on my stump! a combination of wheelchair and off-balance prosthesis may be a way for me to manage to get around until I can get to a surgeon, so that's a very good thing.

Neal, I actually have been considering throwing my prosthetist into this equation. I guess I'm somewhat reluctant because this is still a "new" guy to me...if I'd still had my "old" guy, I'd most likely have started with him. Silly, I know...... :blush: Just wanted to have the feeling of coming to him without being injured, I guess....equally silly!

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Thanks gang! I appreciate everyone's tips and ideas. This morning, I played around with stump sox for a while and came up with an arrangement that takes some of the pressure off the "growth." The downside is that it pushes me so far up in the socket that I'm off-balance and have an aching hip as a result.

However............an aching hip feels pretty decent when compared to an extremely sore and tender spot on my stump! a combination of wheelchair and off-balance prosthesis may be a way for me to manage to get around until I can get to a surgeon, so that's a very good thing.

Neal, I actually have been considering throwing my prosthetist into this equation. I guess I'm somewhat reluctant because this is still a "new" guy to me...if I'd still had my "old" guy, I'd most likely have started with him. Silly, I know...... :blush: Just wanted to have the feeling of coming to him without being injured, I guess....equally silly!

Its all trade off's when sockets are uncomfortable, I am doing similar with socks Cheryl, I am wearing a thick sock over a liner, so the latest idea is cutting a window in the sock over the offending area, which is kind of working some of the time.

I think though I would agree with Neal about seeing a prosthetist before going to a surgeon, though understand what you say about the prosthetist being new and appreciate your system in the US probably completely different to other here, though I would definitely be getting an x ray and an ultra sound of the stump first and maybe getting the prosthetist to take a look at it, it may be that they can make a socket to accommodate any neuroma's or spurs.

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The "hole in the sock" idea sounds brilliant as a stopgap measure, Ann! I'm going to give that one a try! (I've always played around with layering sox cut at different lengths, but hadn't thought of installing a "window" in one.) And Mick, I think I understand how being in control of putting yourself through the "real" pain might decrease the phantoms...I've tended to not have much in the way of phantom pain when I'm wearing my leg and focusing on "the real thing." It's like the pain from pressing on the sore spot overrides the ability to notice the phantoms.

Quick update: My last couple of days with the off-balance socket have cut the "real" pain back by several degrees...it's still very sore, but it's "less very sore" now. And for the past two nights, I have NOT been bothered by the phantom pains! (Hooray!!) I still have the phantom sensations, but that's not a bad thing. I can live just fine with those. The stump itself is starting to feel generally "tender" and itchy, but once again, it's "live-withable."

After reading my silly "explanation" to Neal for not consulting my CPO, I realized that I was being an idiot, basically, so I called and have an appointment with him tomorrow afternoon. And yesterday evening I came home to a phone message from an "out-of-the-area" surgeon. He wants to do a phone consultation before having me drive the 50 miles to see him, so we'll be talking at 11:00-ish tomorrow morning. Just having a new set of dates/times/possibilities is comforting.

And.......(tah-dah!)......I'm wondering if I might have a lead on just what this "growth" on the stump is! I was getting dressed and happened to notice a mole that I've had on my thigh for a few years now. It's not tender to the touch, it's only about the size of a pencil eraser tip, it hasn't appeared to have pulled any surrounding tissue down into it......but it grew very rapidly and it has a crack down the middle of it just like the little monster on my stump. The mole got run by a dermatologist, simply because of the rate of growth and the crack, and it was determined to be "interesting looking but harmless."

My thought is, what if this stump-thingy actually started out as just another of these moles? It's definitely something that's growing primarily on the skin, rather than being a cyst filling up below the surface. it's almost perfectly round, and it's developed that ever-widening crack down the middle, just like the mole. It's enormous, yes, but perhaps it's just been irritated by the fact that it's located in a spot where it gets pushed on and irritated by my liner and socket. And since it's so enormous, perhaps it has roots that are sufficiently large and strong enough to pull in the surrounding tissue...and maybe even latch onto a nerve or two, creating the pain. I'm going to at least mention that possibility to the doctor...my medical records have all been computerized, so there is likely a picture of the mole in there somewhere, so it might give him at least something to see as we discuss it tomorrow.

Does that sound logical, gang? If I actually HAVE figured out what this "thingy" is before the MDs did, I'm going to be pretty proud of myself! :cool:

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Good luck tommorrow - hopefully they will be able to offer some positive suggestions for dealing with it permanently.

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All sounds pretty logical Cheryl, and glad things are feeling a bit more manageable ... being able to relieve pressure off the offending spot and the leg feeling better, is I would have thought a good sign.

Take care and good luck with your appointment tomorrow, hope all goes well and they can sort it for you.

Ann

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Well, the jury's still out on what the "thingy" is, although both the doctor and my CPO agree that it bears some resemblance to the mole and might, indeed, have started out as just that. The CPO has ground out a "relief" in the socket and has given me a soft underliner, along with making some suggestions for continuing to decrease the pressure on "thingy" by other temporary measures. And yes, Ann, he thought cutting a hole in my sock was an excellent short-term solution!

He also measured me and determined that I've recently managed to shrink in length, losing about an inch of my dangling soft tissue. This means that the stump end is now both shorter and wider than it was previously...and therefore my liner doesn't fit any more. There's a bit of "empty space" at the end of the liner now, which is creating even more stress on the stump. He's ordered a couple of replacement liners for me...I can go in and pick them up on Friday. Hooray!

After the phone consult with the doctor, I was set up for an in-person appointment with yet another surgeon...I see him tomorrow afternoon, so that's hopeful.

I had another "phantom-free" night last night...and the beat goes on......... :wink:

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Did he tell you to pad the distal end of the socket? If you have air space there the stump will try to fill that space by forming a huge blister. I've had a couple and one of those got infected. Not fun.

The cheapest, easiest, quickest way to resolve this issue is toilet paper. :biggrin: All I do is take a wad of bathroom tissue. Put it in the socket and step in. If you don't compress the tissue, add more until you can see that you are compressing the tissue quite a bit. You don't want too much or it will throw your alignment off. It's amazing how much better it feels when you make contact with the bottom of the socket.

Good luck Cheryl. It sounds like you're making progress.

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Yep spot on Neal about the space causing problems, I don't tend to get blisters, just the skin goes red and leathery at the distal end of the stump, think they call it suggestion, over here they often use what they call woolly worms, which is unravelled old woollen socks cut up in the end which fill the space and make a contact point for the leg.

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Cheryl - sounds like you at least are starting the process to get yourself better...as I'm reading through everyone's experiences and thinking of mine also..it comes to mind how just when we think we are fine, it's time to make changes again. We are a strong bunch of people aren't we? It's a lifelong deal when you become an amputee. Frankly, with hot temperatures, long hours at the office, sometimes I just get weary of it, but that's just because I think I am shrinking down more and will need new sockets again. You all are amazing, and I am proud to be friends of yours :biggrin: Stay strong Cheryl!

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Thanks, gang...it's good to hear from folks who actually understand what a bad leg situation can mean to an amp. Neal, yes they have recommended that I pad the liner, since that's the part with the gap...their suggestion was to purchase lambswool, but since I hope to have new liners by tomorrow, I'm using cotton balls. And maybe a few layers of toilet paper under that would be a good thing!

Today's update: Well, I had to drive nearly 40 miles to see the surgeon, but I think it was worth it...he's a good listener, very considerate while poking around at the "thingy," and thoughtful in contemplating possible treatment options. Now, unfortunately, he's also not sure just what "thingy" is...he compared it to my mole and said that my theory was a possibility, but he's more inclined to think of it as "a very enthusiastic wart." He said that he was fairly sure that it was just a surface growth, with little chance of any infection or malignancy, but he took a sample of it for a biopsy, just to be sure.

We'll wait on the biopsy results before deciding on a plan of action...if the "wart" theory proves to be correct, he says that simply building an accommodation into my socket and then waiting for "thingy" to live out its life and go away may be preferable to surgery. If "thingy" does need to come off, it will, unfortunately, mean that I'll be legless for a while, so part of me is really hoping for a non-surgical option. But what will be, will be.......

One really lovely thing happened today: "thingy" got shot full of anesthetic before the biopsy, which was a very painful thing at the time, but once it had taken effect, and until it wore off, I was quite blissfully pain-free! :wub:

Stay tuned for the next chapter..........!

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It sounds like you'll soon know exactly what "thingy" is. I hope for a non-surgical solution also. Being legless "ain't no fun." Been there, done that.

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Well, it sounds like you have done everything possible to find a solutin to what "thingy" is. Don't ya just hate it when you are in "wait mode" on something like this! You were talking about the anesthetic and it had me wondering....Now, before everyone shoots the messenger, I know this is wrong and a bad thing to do in almost every case.. but... what if a person were to use something like Ora-Gel on a spot if you are in a situation were you just "HAVE" to wear your leg for something.. Do you think it would work? As I said, I know that this was a bad question to even put out there :blush: .. Just wondering if anyone else had ever thought about it or tried something similar......

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Oh gosh...yeah, Tammie, my sister raised the Ora-Gel question...and I have to admit that I'd also thought of it and have been "sorely" tempted to try the experiment! :wink:

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It sounds so tempting to try....... but..... what a bad idea........no feeling.... no telling the damage that could be done........

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I never thought about doing that. I've never had to use it for a toothache so I don't even think about it's existence. Sounds like it could work wonders. It could work on a surface "zit, thingy, whatever", but would it be able to work on something deeper? I've had a couple of surface thingies a few times that are just annoying and cause a limp. Not terribly painful, just bothersome.

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Actually, Neal, I do think it's limited to "whatever it can touch." I know that when I've used it on a sore tooth, it's been a tooth with a crack or cavity in it, so the Ora-Gel can reach the exposed nerves.

I'd think that it might actually work on a surface-level issue...the concern with it would be the idea of walking around with numbed skin being hidden away where (A) you can't see it and (B) it's under pressure from a socket.

Lovely idea though..............

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Cheryl,

I have Lidoderm patches. I was prescribed these when I first started having pain, before I had the first neuroma removed. They are really awesome things. It is an anesthetic for the surface of your skin. Basically, I would put them on at night while I sleep, and then take it off in the morning. It did help the pain to be more manageable. It didn't really cause my stump to feel funny or completely numb in the socket, just helped with the pain. Also another time, a cream/paste was prescribed and had to be made for me. This also basically had some surface anesthetic in it plus some steroids. I was able to put this on, let it dry, and then put my leg back on.

Just some suggestions from a guy who has tried a number of things. If you want, I can probably find the name of the cream somewhere.

-Stubby

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