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Heather Mills - Amputee Forum
jackcham

Please help

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I’ve posted a few times in the past that I’ve experienced pain in my stump constantly since my amputation over ten years ago. Unlike phantom pain, this pain is directly in my stump. So far, the best any doc could do for me is prescribe an ointment like Lidocaine which only provides relief for 15 or 20 minutes. I did talk with a fellow amp who had the same problem and he said it was due to nerve endings trapped in scar tissue. This made sense to me but correction would require surgery which I am reluctant to pursue. Just recently I visited a neurologist who ordered that an MRA be performed. The MRA was done two weeks ago and I got the results today. The report said that there was a problem with vascular flow in my stump. That was the only level of detail that I got. They are faxing the report to my vascular surgeon and I’ll see what he has to say.

I thought, in the meantime, I’d ask my friends on this forum if any of you had the same problem and, if so, what did you do. Regardless of how many docs I talk to I feel that the advice I get from you guys is much more reliable and I appreciate any help you can give me.

jackcham

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Hello Jack. Sorry that you are in so much discomfort. You asked for anything similar, and the only thing that I can say is that for the first 3 months at home, I was in living hell with a pain in my stump from the sciatic nerve. (I called it my lion, because it roared so much). Eventually however, doctors said that tissue would form over it, and that it has, and I haven't had any problem since. (18 years the 22nd of this month.)

It won't hurt to note here that I was on absolutely no pain medicine at all, except maybe an aspirin or tylonol from the day I came home from the hospital, so I was getting all of the pain, unfiltered - so-to-speak.

I have no idea what I have said, that might help, but it was all that I could relate to.

I do hope that you find a cure for it. Take care and let us know.

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Jack, I've not had this situation, so I'm not much help. However, if you feel at all uneasy with one doctors suggestion, please don't hesitate to get a second or third opinion.

Best of luck...

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Oh Jack - are you still battling with this terrible pain? I'm so sorry. How can it be that nobody can help you? I just don't get it. I wish you well my friend. Just carry on asking and asking and hopefully sometime soon you will find an answer.

All the best,

Ally

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Hi Jack

I'm sorry to hear you're pain is still troubling you.

When you first described it, I thought it sounded like neuropathic pain too...but the MRI scan showed vascular insufficiency, didn't it?

Tell me...

...is your pain relieved by hot or cold?

...does a stump shrinker help or does it make it worse?

...does the pain trouble you when you are in bed at night? (Muz, please leave this questions alone!)

Lizzie :)

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Hope you get this one sorted. Keep us posted on how you get on with your vascular surgeon. While I'm all for getting a second opinion, sometimes valuable time can be lost trying to chase for the answer you want to hear rather than the correct one.

Good luck

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Guest bearlover

Hello ! i Like you also have much phantom pain. As well as "real" pain. Iwas given Liderm Lidocaine Patches 5%. Prescribed to be applied directly on my stump at night. 12 hours on and 12 hours off. They did not help to much but some people get some relief. I do take Nortriptyline 10mg. For pain also. But I take thes at bed time as they make me sleepy. I have also tried 3 nerve blocks from pain managment. This was painful and did not last. only about a week or so. I have also been advised to use a spinal implant. But I rejected. I did some reading and they reallly don't help all people. However some people have had success with them. Good luck to you. I can honestly feel you pain. I feel I am in the same boat that you are in. Keep us posted how you are doing!! :)

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Hello ! i Like you also have much phantom pain. As well as "real" pain. Iwas given Liderm Lidocaine Patches 5%. Prescribed to be applied directly on my stump at night. 12 hours on and 12 hours off. They did not help to much but some people get some relief. I do take Nortriptyline 10mg. For pain also. But I take thes at bed time as they make me sleepy. I have also tried 3 nerve blocks from pain managment. This was painful and did not last. only about a week or so. I have also been advised to use a spinal implant. But I rejected. I did some reading and they reallly don't help all people. However some people have had success with them. Good luck to you. I can honestly feel you pain. I feel I am in the same boat that you are in. Keep us posted how you are doing!! :)

i was just reading somw old posts and came upon this. I have a spinal cord stimulator implant (May 1996) Without it I wouldn't be here. Give it some serious thought. I know it doesn't work for everyone - but it saved my life.

JudyH

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Guest bearlover

That was suggested but I rejected. They don't always help. Happy for you tho! :) My sister is a nurse and say they help some people but not all. I don't want to take a chance. Thans tho!! :) Just don't wat my spine monkeyed with!!!

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My LAKA was caused by a vascular problem, a thrombosis and pheblitis. I have typical phantom pain as others have. Where in your stump (AK or BK) is the pain? Is there pain with and/or without a prosthesis? If the vascular surgeon can help by restoring blood flow to the area then I would pursue that. I remember reading my operation reports and specifically there was mention of a good blood flow in the residual stump. Read your reports in your medical records. The vascular surgeon will likely have them. Good luck!

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Guest bearlover

Hi! I'm a LBK a ortopedic surgen did my surgery. My phantom pain is in my stump. But I have long history of pain before the amputation due to may operations from a birth defect. called Pseudoarthrosis of the tibia. when I'm wearing the prosthetic it feels like my foot is still there and pain, also I can "feel" the missing tiba :blink: When I take my leg off the pain goes to the stump. I have 6" of a stump. Pain has always been a issue since childhood. I have been told the more pain a person has before amputation. They contine to have pain after amputation :( Some one I hear of had a amputation at age 14 and continues to have phantom pain at age 74. :o So I quess each case is different...

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Hi Jack

I too have experienced "stump pain", many years after the surgery. This was caused initially wearing a limb that I really shouldn't have been wearing. I felt that even the prosthetists did not understand the pain I was experiencing, first I was told that it would wear off (it didn't) and that I should expect it whilst my stump got used to the limb and when it didn't go away suggestions of phantom pains were made, which I knew it wasn't. (Yes very bad advice, I know) Consequently I developed an infection and I was off the leg. However, the pain continued even after the infection healed. I have a sensitive stump anyway (skin grafting) and during fitting sessions and examinations, found the stump really painful.

I travelled around a bit trying to find a centre to try and rectify the problems and it wasn't until I went somewhere with people who seemed to understand the problems I was having and seemed confident in treating me that I found the "pain factor" actually went away. Unfortunately, I couldn't stay there, but that is another story, but I think once you start experiencing pain the mind sort of goes into overdrive, well that was my experience anyway.

Sorry, probably not explaining myself very well, but what I am saying is there might be a physical cause for your pain (if the MRI scan showed up something, that is obviously real) and if there is you do need to get that addressed, if you have a reason and treatment for it I am sure that will help. Also get your prosthesis checked, if you can get several opinions, make sure its not putting pressure anywhere or not restricting the circulation etc.

But as Marilyn says if you are not happy with one doctors opinion get another.

I hope things improve soon.

Ann

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