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dalec919

Phantom and stump pain- shared experiances

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Hello all. I thought I'd write and share a couple of experiances in hope that any information might be of help to someone. I've not been active in the forum for a while due to a phase that I attribute to "moving on" with my life after the accident, but after talking with some of the medical staff at Georgetown University Hospital, I am inspired to participate again in sharing with others our experiances, as amputees.

My original LAK was 2 1/2 years ago from an auto accident. I recall my phantoms for the first 6 months were dibilitating, and I took Gabapintin and then switched to Lyrica. The Lyrica was helpful in controlling the pain, but I found myself suffering from memeory loss, and so I went to my Dr. and requested to be "weaned off" of the medication. Also, I had tried some medical accupunture treatments, which were expensive, and I found no noticiable improvements, so I stopped after 3 sessions.

In the next 6-12 months, I was walking in my prosthetic on a daily basis, and that seemed to calm my "angry nerve spirits" that would still send jolts up my leg at anytime, unannounced. The phantoms could hit anytime, while sitting or driving, but mostly during periods of inactivity. Other times, the phantomes would be more like sensations of a knife blade, hacking at my missing foot. Eventually, I tuned out most of this sensation, but as many of you know, a "zinger" phantom is something to make you yelp or jump, and you cant ignore those so easily. I was fortunate at this point, that I could take a few Advil at night, and it would calm me enough to be able to sleep.

At about 12 months from the amp, I developed a pain in my stump that was a soreness, or bruised feeling. The more active I was, the worse it became. I went to the DR and the xray showed some large bone growths at the bottom, about the size of a finger. A surgery was done, and they removed all that bone growth, and after 8 weeks I was back in my prosthetic. Again, after the surgery, my phantoms flared, and again they calmed down after a few months, but still would come back in the form of the zingers or knife hacking feeling.

Fast forward another twelve months- I had relocated to Washington DC area, and my new prosthetist felt I needed a revision to remove excessive tissue that caused my socket fittings to loose and undesirable. He referred me to a plastic surgeon (Dr Attenger at Georgetown University Hospital) who determined that I could benefit revision surgury. He also asked about phantoms, and I told him about my zingers, which had been getting worse lately.

The procedure was done 4 weeks ago, along with another surgeon who specializes in nerve treatment. After the surgury, the Dr told me that they had found some neuromas, and that my sciatic nerve had been dangling loose inside. He also told me that the sciatic nerve branchs out - one is a return nerve, and so they cleaned up the nerve endings and fastened the loose ends together.

2 weeks after the surgury, I was experiancing phantoms, but weaned myself all the pain meds and dealt with the pain, mostly by taking Advil and staying busy to ignore the sensation. Now its been 4-5 weeks, and I was happy to report to my Dr that my phantoms were significantly better, and that I had not had any zingers in weeks! My current pain, is about 1 or 2 in the range scale, and I am hopeful that it continues to diminish. Next week I get refitted for a new socket, and in two weeks I hope to be walking about, with a much improved fitting, and without pain. I continue to remain cautiously optimistic, but so far the phantoms are at an all time low.

While everyone has different circumstances, I hope that maybe this information has a benefit to someone out there. Good luck to all of you and keep taking each day in a positive direction in continually working to improve your life.

Dale

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I'm seven years out and still get a zinger occasionally. I don't think we can ever be totally rid of them. Mine usually comes at the end of a hard day. I will get some phantom soreness when my leg isn't fitting well. I seldom get any actual pain in Stumpy now that I resolved the infected hair follicles.

It's always good to hear from you newbies again. Most of us reach that point where we just get on with life. It's a feel good feeling when you can help others. I think helping others is why I lost my leg. I was always stingy with my time before. Now I enjoy helping other amputees understand amputation.

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Neal- thanks. Since they tied my sciadic nerve endings together, so far no zingers- knock on wood tho, since you never know when those things can find us. I used to get them mostly when driving in the car. I always wondered if the electrical emanations from vehicles had anything to do with it. Regardless, I think phantom pain and limb is something that maybe never goes completely away, but our brains learn to tune must of it out- like repetative noise around us which we dont really hear.

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I found your posting really interesting and quite helpful so thanks for posting Dale.

I am forty plus years in, (though had a revision three years ago) but in the last year I have had problems with fitting and latterly have spells where the nerves are def not happy. An x ray has shown a bone spur mid fib which is new, though also have an older one which doesn't or didn't give probs, and a neuroma which is fine as long as no pressure is put on it,though this is under skin grafting so the area prob a bit more sensitive than would otherwise be, quite often have sciatic probs too, though am b/k. For me the fit of the prosthesis is crucial, at the moment my older ones are getting me by ok, but the worry is that the new ones are just now un-walkable, and obviously I want to keep walking.

I am hoping to get advice on whats my best way forward with this quite soon, so was interested to learn about your bone spur removal and the amount of time you were out of your leg, 8 weeks is about what I imagined.

I go along with your philosophies Neal, I think everything happens for a reason.

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At 9.5 months post Ertl I rarely experience any phantoms of any kind. On Friday while driving to get casted for definitive socket #2 I did feel a five second minor zinger in my absent right foot. It was not that bad. I feel for those who describe their zingers as being high level pain equated with a feeling of a knife to their phantom limb. I consider myself blessed.

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I too feel for those who suffer severe phantoms. Occasionally, I have what I call "hot pokers" being stuck in my non-existent big toe and sometimes in my ankle. Those get my attention! Otherwise, some buzzing sensations in my residual limb, which are not bothersome. I count myself blessed.

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I found your posting really interesting and quite helpful so thanks for posting Dale.

I am forty plus years in, (though had a revision three years ago) but in the last year I have had problems with fitting and latterly have spells where the nerves are def not happy. An x ray has shown a bone spur mid fib which is new, though also have an older one which doesn't or didn't give probs, and a neuroma which is fine as long as no pressure is put on it,though this is under skin grafting so the area prob a bit more sensitive than would otherwise be, quite often have sciatic probs too, though am b/k. For me the fit of the prosthesis is crucial, at the moment my older ones are getting me by ok, but the worry is that the new ones are just now un-walkable, and obviously I want to keep walking.

I am hoping to get advice on whats my best way forward with this quite soon, so was interested to learn about your bone spur removal and the amount of time you were out of your leg, 8 weeks is about what I imagined.

I go along with your philosophies Neal, I think everything happens for a reason.

Ann,

I can't really advise on what to do with your bone spurs, but I would hope that your Dr can determine if they are causing issues. I would think that if they are of any size at all, they could lead to soreness, especially if your socket pushes against them. As for being out of the leg- 8 weeks is what my Dr told me to stay off of the leg.

Best of luck with it.

Dale

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I found your posting really interesting and quite helpful so thanks for posting Dale.

I am forty plus years in, (though had a revision three years ago) but in the last year I have had problems with fitting and latterly have spells where the nerves are def not happy. An x ray has shown a bone spur mid fib which is new, though also have an older one which doesn't or didn't give probs, and a neuroma which is fine as long as no pressure is put on it,though this is under skin grafting so the area prob a bit more sensitive than would otherwise be, quite often have sciatic probs too, though am b/k. For me the fit of the prosthesis is crucial, at the moment my older ones are getting me by ok, but the worry is that the new ones are just now un-walkable, and obviously I want to keep walking.

I am hoping to get advice on whats my best way forward with this quite soon, so was interested to learn about your bone spur removal and the amount of time you were out of your leg, 8 weeks is about what I imagined.

I go along with your philosophies Neal, I think everything happens for a reason.

Ann,

I can't really advise on what to do with your bone spurs, but I would hope that your Dr can determine if they are causing issues. I would think that if they are of any size at all, they could lead to soreness, especially if your socket pushes against them. As for being out of the leg- 8 weeks is what my Dr told me to stay off of the leg.

Best of luck with it.

Dale

Thanks Dale, am going to see someone today who might be able to tell me more. Am curious why I now have this one, as its over forty years, and it wasn't growing at all a couple of years of ago, and not low enough I imagine to be affected by the revision, though have had some pretty uncomfortable prostheses made me a while back. But whatever, we have to go with these things. Hopefully I will get some advice today.

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Thanks Dale, am going to see someone today who might be able to tell me more. Am curious why I now have this one, as its over forty years, and it wasn't growing at all a couple of years of ago, and not low enough I imagine to be affected by the revision, though have had some pretty uncomfortable prostheses made me a while back. But whatever, we have to go with these things. Hopefully I will get some advice today.

Just as a follow-up to my last posting. Was told today that I don't have to worry about the bone spur at the moment, as its not causing probs, and apparrently if you have to have one, its growing the best way it can, and may stop, without causing problems. Still don't know why I got it in first place though, just one of those things I guess.

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