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Heather Mills - Amputee Forum
SUE TAYLOR

Neuromas are a pain!

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I haven't posted anything, for such a long time, although I do check in now and again.

I have yet another neuroma, that is being removed on Saturday. I wish they would just stop growing! My surgeon has asked me to consider an above knee amputation, as my knee is also not great / stable.

Has anyone had to consider going from below to above knee?

I have always thought myself lucky to have my knee, but the more problems I seem to have, the more mobility I seem to lose. My left knee is looking like it will need replacing, and my RBK is not great either. I have a huge neuroma, and the nerve thickens half way down my thigh - this is the 4th one! The surgeon is meant to be cutting it out, and burying it into my hamstring, and completely re-doing my scar line, which is not great, and I have a pocket in the scar line, from MRSA. This time the surgeon is a plastic surgeon.

I am concerned that the constant neuromas, issues with both knees etc will mean that I wil have to consider taking my amputation above the knee. I am just on the limit bone wise, for my pin socket at the moment, as well. The last op - 2 years ago, they removed the fibular bone as it was chopsticking, and a massive neuroma (size of a walnut). I also have a bone spur on the fibular head, which is rubbing.

I've been an amputee for 8 1/2 years now, and always got on with it, but this last year, my mobility is shocking and I am scared I'll have no real choice over becoming above knee.

Sue

Cardiff, Wales, UK

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Hi Sue, nice to see you back again but sorry you are having probs.

I have a neuroma mid stump, but most of the time they manage to fit socket around that and a couple of spurs, though do have lost of probs getting sockets made on that side.

I had a b/k revision few years back and did keep the knee, though saw a couple of surgeons and one was talking about going above, but as a bilateral, at the time it was a bit of a shock and it scared me silly, the revision was successful though I hadn't realized the damaged extent of the stump under my skin graft which had always been there but I hadn't realized and never been told, so I now see the other surgeons thinking, it does reduce my walking somewhat, though I think going a/k, which I realize might happen at some point for me as a bilateral would complicate things, so for me its all trade off's, but happy keeping my knee and what goes with it at the moment, though things obviously different for you as a single amp.

I am glad you are going plastically this time, that's what I did too, as they had to work with existing skin graft, but they did a brilliant job and I was really amazed at the results, things have been much more manageable since, so hope yours goes well too. Good luck on Saturday.

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Hi Sue,

I would never give up my knee on account of a neuroma as it would compromise my current mobility. The stability of the knee is a totally seperate issue which I would be getting other opinions on to make a more informed decision.

You are always welcome Sue. Thanks for reaching out.

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I agree with Jonny, seems like separate things going on, neuroma's can be easily dealt with. Instability in your knee joint is an orthopaedic issue and I would seek a second opinion. Becoming an above knee amp is the last thing you need, understand your fears.

Hope you manage to get the help you need with this.

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I agree with Jonny, seems like separate things going on, neuroma's can be easily dealt with. Instability in your knee joint is an orthopaedic issue and I would seek a second opinion. Becoming an above knee amp is the last thing you need, understand your fears.

Hope you manage to get the help you need with this.

Just picking up on what Lynne is saying ...

a lot of the medical fraternity do all too easily write us off instead of investigating and looking at each issue that might be going on within our stumps .... make sure you get scans etc .... I've had similar recently from a bout of knee pain ... and the conversation went along the lines of 'well you've done well up to now ... but ....arthritis ..... age and preparing myself not to be walking for ever etc etc', could see we were getting to the point of talking about painkillers, my reply was what would you do with a 'non amp coming to you with the same', he said x rays, so I said right send me for those as a start .... as it turned out, it was not my knee's as such but prostheses that needed altering. You can ask to see more than one specialist, even within the NHS system... and nueroma's and spurs can often be addressed... we've just got to get access to the right people who know how to sort these things out properly.

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Thanks everyone.

I do not want to lose my knee. My left knee is damaged and facing a knee replacement, and my right is problematic. I've had 4 revisions now - through neuromas, spurs and my fibular being unstable. I'm tired of surgery. My stump length is right on the limit for a pin system, which for me, has been a great system.

I agree about the making of the legs - it differs so much centre to centre. Saturday, the plan is to revise my scar line, which looks like tram lines criss crossing, and to remove the neuroma again, its the same one each time - peronneal nerve. They're going to bury it in the hamstring muscle - my concern has been what happens when it grows back - regarding the hamstring being able to extend etc. Surgeon says it will remove the pressure from within my socket and move it higher up, where it is not socket bearing. Many medical professionals say that as my amputation was caused through trauma - the nerves are very difficult to repair/treat. We shall see. He is a nerve specialist and plastic surgeon, so hopefully a fresh pair of eyes from the vascular/orthopaedic combination.

I've got an orthopaedic appointment end of May, and will be asking them the questions about both knees.

Sue

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I hope all goes well for you, Sue. I can only imagine how you must be feeling.

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Do love :wub: that hat Marcia.

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Hi all,

I've had the surgery in Morriston, plastics unit. I have a honeycombe dressing on, at the moment, which comes off Friday - almost 2 weeks after the surgery. I had MRSA last time - 2 years ago at the University Hospital of Wales - which was another reason for opting for Morriston Plastics Unit.

The surgeon, specialises in Nerves, and so I hope for a better outcome. He has cut the huge neuroma off, split the nerve into two and joined the ends together - trying to fool it into not searching for the end. He also revised my scar line, which was untidy, due to 4 revisions.

He has buried the nerve in the popliateal(?) behind the knee.

I am hoping for a good recovery and to have less pain.

My knees - both left and right, are being looked at on 31st May by an orthopaedic surgeon, so we shall see what he says. For now, I am hoping for a good recovery and to get the nerve pain and sensation to calm down from the surgery.

Sue

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Hope you heal well Sue and that it will be an improvement for you. Also hope you get a good result from your orthopaedic appointment.

Be kind to yourself, rest and recover well.

Lynne

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Hope you'll soon be all better.

Ann, isn't that hat a hoot? It actually belonged to my friend and after a few cocktails, I had to have it!

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And I told my husband, this is to be my obituary picture :laugh:

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Hey girlfriend I think U look so cool in it. I really do like it on u. I am glad u posted because after I had posted, I swear to heavens I could not find it again. Anyway ur a cool lady, mama. :happy:

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Thanks, Ann. It's fun to be old AND cool. :wink: Life is good.

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Wishing you a good recovery, Sue! :biggrin:

And Marcia, you are far too cool to ever really be "old!"

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Cherylm, she's NOT old., and looks good too. I do believe her figure is "built like a brick S#@T house. :rolleyes: I think that's the saying .

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Not true, Ann. Not true. But thanks. :smile:

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Hi all,

Thank you for the messages of support. I had the bandages off yesterday - and it looks amazing! This is the best my scar line / stump has looked in 8 years! The Plastics team at Morriston Hospital have done a fab job. My neuroma was cut off, and then the nerve ending was split, joined together and then buried in the popliteal fossa - back of the knee.

Hopefully the nerve will not start looking for the end, and will think its on a continuous loop, where it's been joined together!

Just got to get my knees sorted now and I'll be back to better fitness.

Sue

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Glad everything is going well Sue. Plastics are quite amazing I think, with mine I couldn't quite work out how they'd been able to do what they did, and like you have a very neat scar line.

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Good news, Sue. Hang in there!

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Great to hear it, Sue!

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While ya all were on the subject of neuroma's, I wanted to tell you of something that I was told this past weekend..

As many of you know in the US, I am the volunteer Peer Visitor Coordinator for the Amputee Coalition. I set up the peer visits.... Anyway, long story shortened, I talk with amps all over the US and the other day, a gentleman said and I quote "I just heard a hot tip for people with phantom pain or neuroma pain. "unquote. It is a rub on lotion called Diabet Aide and you can purchase it at Walmart.... It is for diabetics that have neuropathy pain. You are supposed to put a small amount in your hand, then rub it on your limb in the area where you have the pain. It is supposed to stop it. I looked at some the other day, bought it to try, but since I have a small raw spot on the end of my stump where my neuroma is, I haven't used it yet.

The gentleman telling me this said that the person/amp telling his this swore by it, is a diabetic, but in desparation one day, tried it on the neuroma instead of his remaining foot for diabetic pain....

I have no idea if it work, but I figured that $4.97 is worth a shot, even if it doesn't work. If it does, it's much better than pain meds...

Now for the nasty part....Your all responsible for yourself if you try this.. it's your decision. The forum, ( and me) are neither promoting or denying this stuff works... Just putting the information out there for you to decide yourself if you so wish to......

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Good info Tammie.

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While ya all were on the subject of neuroma's, I wanted to tell you of something that I was told this past weekend..

As many of you know in the US, I am the volunteer Peer Visitor Coordinator for the Amputee Coalition. I set up the peer visits.... Anyway, long story shortened, I talk with amps all over the US and the other day, a gentleman said and I quote "I just heard a hot tip for people with phantom pain or neuroma pain. "unquote. It is a rub on lotion called Diabet Aide and you can purchase it at Walmart.... It is for diabetics that have neuropathy pain. You are supposed to put a small amount in your hand, then rub it on your limb in the area where you have the pain. It is supposed to stop it. I looked at some the other day, bought it to try, but since I have a small raw spot on the end of my stump where my neuroma is, I haven't used it yet.

The gentleman telling me this said that the person/amp telling his this swore by it, is a diabetic, but in desparation one day, tried it on the neuroma instead of his remaining foot for diabetic pain....

I have no idea if it work, but I figured that $4.97 is worth a shot, even if it doesn't work. If it does, it's much better than pain meds...

Now for the nasty part....Your all responsible for yourself if you try this.. it's your decision. The forum, ( and me) are neither promoting or denying this stuff works... Just putting the information out there for you to decide yourself if you so wish to......

Just ordered it online Tammie. Thank you for sharing!!!! I will let you know my results!!!!

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Hope it works..... It sounds like it should, Jon.... many diabetics suffer with neuropathy and that's what this is made for. It's to help stop the tingly, burning pain of neuropathy......I hope it works too.....

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