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Heather Mills - Amputee Forum
MDMILS

24yr old / Story and help!

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I am new to this forum, and wasn't sure if my previous introduction went through.

Who I am...

Anyways, I am a 24yr old ex. college athlete who was involved in a motorcycle accident 3years ago. I am highly active, and continue to weight lift 4 days a week. I am VERY outgoing and love life. Sure at times things are hard, especially with relationships etc. But I try to make sure everyone else is happy and i'm the last to worry about myself. I am religious and it does bring a sense of hope. Thats pretty much my attitude at the moment... Anyways, :D

Accident...

I went through 10 operations to repair bilat. femurs and Rt. Patella, bilat. facioutomy from compartment syndrome, skin graphs etc., and ultimately lost 80% of the muscle in my right leg. After 77 days they released me. For the next few months I had the pleasure of debriment on my leg at home. A little weird sticking thigns into your leg at first, but you get used to it! They were able to salvage my leg, but not without losing virtually all movement in the ankle. Basically I have my tib and fib with a foot attached at the end.

Problems...

I lack virtually all movement in my right ankle, however I do have some planterflexion which allows me to walk around the house as well as help with balance issues. I have severe knee instability (torn acl along with the shattered patella not so happy anymore) also the lack of muscle in the region doesn't help either. I have throbbing pain if I don't get 10hrs of sleep. The small amount of remainding muscle continues to atrophy just below the knee. I do all that I can, but am not sure as to why it continues. Circulation is starting to take a toll from personal pain levels. I have hammertoe, that I developed over the last 4months, which does hurt to walk on surfaces other then carpet. I also have footdrop in my LFT foot, but am able to clear neutral to help. I am not entirely sure if blood supply(lack of muscle) will be an issue with bone integrity for the tib and fib. Any ideas?

Good things...

Balance is wonderful, as the small amount of planterflexion aids a considerable amount. As I regained the little that I had over the course of the last 3 years. I have sensation in the distal portion of my Rt. foot, so infection is not a large concern(stepping on something and not knowing it) Nobody can tell I have undergone any sort of injury at all. Most of the time its hard for people to understand the extent of the complications, as they don't see the missing muscle or scaring/brace.

What I have been told...

I have talked to several doctors, who have had different opinions. Because of how much muscle was removed and how high it was on the lower leg, AK would be what was recommended. However, I have also had other doctors say not to do anything. "if your walking, don't touch it if you are able to tolerate the pain."

My view...

I personally love the fact that I am able to throw a pair of pants on and it in someways goes away. This of course helps deal with everything. But I do have phantom pains, and long walks are a tiring chore. My leg continues to atrophy, and the little muscle that I do have continues to dwindle(I am not entirely sure as to why) I have throbbing pain if I don't get 10hrs of sleep. Vascular, my foot hurts if my shoe is to tight. But again, I have a somewhat normal gait, and for a 24yr old, this from a personal standpoint is a big deal. From how things have been going, I am worried that am amputation will be in the near future. I am not sure if a BK would occur with somesort of TKR if possible... I don't know if this is even a possibility. Possibly salvaging the lower muscle for a flap to help the stump. Again, I am not entirely sure at this point. But what I have been told is that AK would be the choice.

Personal perspective...

I can't say how much i value having a somewhat normal gait. I love cycling, and I do as much as I can until I cry (no literally). But I also have to be honest with myself and know that AK might be around the corner.

Final thoughts...

Well guys, I am at a lost for words. Thats where I am at, and I desperately need some words of wisdom or direction. Friends, despite how wonderful they are, don't understand the daily struggles that I face. And ultimately don't understand where and what I am facing. I am very thankful to be alive, and standing period. I would like the pain to go away, and being able to somewhat go on with my life and accept it. However, its a catch 22, knowing what I would lose (AK). I would love to hear from you guys, and get some others perspective, or options that I have to give it my shot prior to having my AK amputation.

Thanks guys,

P.S. I leave my computer online. My aim SN is MDMILS. Would love to talk.

Matt :D

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Hi Matt, welcome to the forum-I'm sorry to hear what you have gone through and I hope you can find a way to get over the pain barrier.

I'm an RAK and have been for the past 2 years so in many ways I'm still very new to all of this. I have no idea whether an amputation would be the right or wrong way to go for you and I guess it's soemthing you need to figure out. At the end of it all you need to feel right about your decision. Seek as many referals as necessary.

Phantom pain is something that goes with the territory (for me anyway) and 2 years on I still have it-not as bad as it was but it is definately with me all the time. How you choose to deal with it is a personal issue.

Feel free to ask as many questions as you wish; there are many people here who can give you their experiences all of which will be different.

Many above knee amps get around easily, while others do it much harder. I fall into the second catergory, but try to make the best of my situation. Like you I am also lucky to be alive; however at some point you need to put that into perspective as well.

Good luck-I've waffled on enough

Mel.

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G'day Matt and welcome here to the forum. Some great people here with some great ideas and I think you'll meet all of them.

You have some tough decisions to make and I don't envy you.

The reason your calf muscles will atrophy is the lack of movement in your ankle. The only way your calf muscles really get worked is by flexing and extending your foot. You get a bit out of the Gastroc muscle in knee flexion because it attatches above the joint, but you wont get much out of it.

Anyways, welcome. Hope you get what you need here.

Cat

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Welcome to the forum, Matt! :) Wow...What a post! :huh:

I'm bilateral (AK & BK) and I've had recently had fairly extensive limb reconstruction (i.e. limb salvage), so I think I'll be able to help you a little, so I'll PM you. But, just for the record...

What I have been told...

I have talked to several doctors, who have had different opinions. Because of how much muscle was removed and how high it was on the lower leg, AK would be what was recommended. However, I have also had other doctors say not to do anything. "if your walking, don't touch it if you are able to tolerate the pain."

...I wholeheartedly agree with the wait & see approach...

Speak to you soon.

Lizzie :)

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Welcome Matt. I don't have much advice for you except to listen to the people of this forum that have been where you are now. We have some pretty knowledgeable people here and they know what they're talking about. What it comes down to though, in the end, it is your decision. I hope that you gain the information you need to help you with that tough decision.

Take care.

Carol

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Hello MD: Welcome to the forum, lots of great people here. I'm a LAKA and if I can help in anyway, just ask away.

You can get most questions answered here on this forum.

Lynne

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Hi Matt:

Welcome to our forum family! As you are finding, we have a vast amount of people with amazing knowledge on just about every subject.

I wish I could give you some words of wisdom to make your decision come earlier. Unfortunately, I can't. I'm a bilateral bka and I didn't get to make the decision of amputation. I had to have it--there were no alternative choice for me to ponder.

I wish you the best. I hope you as much information here that you need.

Patti

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Welcome Matt

I, too, wish you all the best and don't envy you the decision you have to make. I had no choice as most of my foot was ripped off in my accident. In many ways I am glad I did not have to face multiple operations in attempt to save my foot only to lose it later on. If there was a way to help make your decision easier I would certainly do so. This is a wonderful group of people here and they are always willing to help so please take advantage of us.

Good thoughts and wishes

Diane :)

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Hi, Matt, and welcome. Everyone has given you good advice. The most important, I think, is the wait and see approach. Good luck.

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:D :D Welcome Matt: I don't know what to say, if you want the truth. I don't believe I would have an amputation at this time, if you can stand the pain. That is a decision not taken lightly :( .......if fact I know I would hold on as long as possible.

And yes, welcome to the forum....I am sure there will be someone who is much wiser and has the great gift of gab to help you. B) eag

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:D  :D Welcome Matt:  I don't know what to say, if you want the truth.  I don't believe I would have an amputation at this time, if you can stand the pain.  That is a decision not taken lightly  :( .......if fact I know I would hold on as long as possible.     

And yes, welcome to the forum....I am sure there will be someone who is much wiser and has the great gift of gab to help you.    B)    eag

Thanks everyone for their words. Does anyone know of any muscle regeneration methods (stem cell) or supplements that may help vascular issues? Because of what I have to lose, I figure any and everything that I can try is worth it, as long as this does not impact my major organs etc.

I used to take 4-6 vicodin es tablets a day, which helped a great deal with the pain. I have managed to lean myself off of them and just get used to having a constant level of pain. However, evening and sleeping has become somewhat an issue, and I have been finding myself taking large dosages of anything over the counter. I have tried neurontin, however I did not like the reactions that I had. Any alternatives? Or is being a stubborn SOB the best medication? :rolleyes:

Thanks again guys! :D

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HI MATT, SORRY TO HEAR ABOUT YOUR PAIN . WELCOME TO OUR FAMILY.

AFTER HAVE SAID ALL ABOVE, I WANT TO EXPRESS TO YOU MY OPINION ABOUT AMPUTATION ABOVE KNEE: IF YOU CAN AVOID IT, DON'T GO FOR IT. DID YOUR DOCTORS SAID ANYTHING ABOUT BELOW THE KNEE? YOU SEE, GOD MADE OUR BODY SO PERFECT THAT ALTHOUGH MANY AND MANY TRIED TO IMITATE IT, NOBODY CAN MAKE IT THE SAME WAY OR AT LEAST WITH THE SAME COMFORT. WHEN YOU ARE AN ABOVE KNEE AMPUTEE, YOU HAVE TO HAVE A SOCKET THAT FITS YOU PERFECTLY, COMFORTABLE, A KNEE THAT WILL GIVE YOU SAME MOVIMENT AND THE FOOT THAT HAS TO BE PROPER FOR WHAT YOU LIKE TO DO, LIKE RUN OR WALK. AFTER ALL THAT THE LEG HAS TO HAVE THE PROPER ALINGNMENT SO YOUR BACK DOESN'T KILL YOU AFTER SOME HOURS OF USING IT.

EVERYTIME I ASK MY PROTHESTIST ABOUT HAVING SOMETHING, HE WILL TELL ME IT IS ONLY POSSIBLE FOR BELOW KNEE AMPUTEE. HE TELLS ME IT IS MUCH EASIER TO MAKE A PROSTHETS FOR A BELOW KNEE. SO, HERE I AM TELLING YOUR THE REAL DEAL WITH ABOVE KNEE, HOPING IF AMPUTATION HAS TO HAPPEN, THAT YOU AT LEAST CAN TRY TO SAVE YOUR KNEE.

GOOD LUCK AND YOU CAN COUNT ON ME FOR ANY HELP I CAN GIVE YOU

DEA

p.s. please forgive my spelling.

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I used to take 4-6 vicodin es tablets a day, which helped a great deal with the pain.  I have managed to lean myself off of them and just get used to having a constant level of pain.  However, evening and sleeping has become somewhat an issue, and I have been finding myself taking large dosages of anything over the counter.  I have tried neurontin, however I did not like the reactions that I had.  Any alternatives?  Or is being a stubborn SOB the best medication?  :blink:

Matt--

I used to take Nuerontin, but I had bad reactions to it. :rolleyes: After trying several different kinds of meds, my pain specialist put me on Cymbaltic. B) You might want to ask your doctor about Cymbaltic. But remember, not all medication works for everyone. That's why it's so important to talk to yopur doctor or pain specialist.

I hope this information helps you. I wish you all the best. :D

Patti

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;) Patti and Matt ..... I guess I'm being nosey....what kind of reaction did you get when taking neurontin?

I take it and so far haven't had any reaction. Geez, maybe I'm having them and don't even know it

:lol: :lol: eag

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;) Patti and Matt ..... I guess I'm being nosey....what kind of reaction did you get when taking neurontin?

I take it and so far haven't had any reaction. Geez, maybe I'm having them and don't even know it

:lol: :lol: eag

would lacked any real, "Get up and go." I could sleep an entire day without any problem. Maybe it wasn't such a bad thing for me afterall ;) :)

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Hi Matt

Welcome again to the forum, and you have a great attitude, let me know if you need anything.

Lesley

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Hi Matt

Welcome again to the forum, and you have a great attitude, let me know if you need anything.

Lesley

I think my attitude is either from God (in your religious) or personal, as I am a stubborn SOB. :) Thanks everyone for the welcome and words of wisdom.

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:D Hi Matt

I'm new to this forum too. Welcome!!!! Don't get to get on here to much myself but, I can tell you that 25 years ago I lost my right leg in a motorcycle accident and also didn't have the choice of saving it. I can tell you that when I think about it I would have done everything in my power to save anything I could have. Personally I keep myself so busy that I not only exceed but, just don't have time to think about it. The power of the mind over matter is so positive its overwhelming. When we beleive in ourselves and what we can accomplish in the future all else just seems to go away. Good luck in all your decisions and either way keep the chin up and be strong, I was only 21 when I lost mine and I've been able to accomplish quite alot. Nothing is impossible.

Take care

Pete

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Hi Matt and welcome

I'm lbk -- the surgeons managed to save my knee and I'm glad they did---motorcycle accident, a car did a "U" turn in front of me. Lucky to still be on this planet really.

Your comments about neurontin or gabapentin are correct. I can sleep for Britain and I thought that when they amputated my leg all my testosterone leaked out and left me with no "get up".

My "go" left me a few years ago when i turned 60 :D :D but I notice that since being on this godawful drug I can't remember anything, so maybe I've been like this for a number of years :wub::wub: .

You should find answers to most of your questions on here.These guys helped me a lot -- I'm sure they will you.

John

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Hi Matt, welcome to the forum. I am sure that once you have gleaned enough information you will make the right decision, that is the important thing, it has to be for you.

I am rbk, i was in pain for quite a while before my op but there was no way i could avoid it being carried out because i had gangrene that wasn't gonna get any better, the longer left the higher the amp would have to be, besides i couldn't take the extreme pain any longer.

I undersatnd the reluctance of the above knee amps, those of us with our knees realise how important it is to have but it is not the be all or end all.

Keep asking questions, get all the information you can. If you are coping with the pain at the moment then don't rush into anything, as Dea already said, the human body is very complex and cannot be copied to perfection, tho i wouldn't suffer extremes of pain.

All the best.

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