From Denis85

[allenuk]

Denis85 sent me a PM as follows, which I am repeating here so that he can get the benefit of all our experiences:

i'm new here - my name is denis, 23 years old and i'm expecting rbk amputation due healing problems after car accident in may last year. i'd like to talk with someone who is amputee too

A.

[allenuk]

So, since I started it off, I'll make the first reply.

I'm old, fat, unfit. Had a bka 4-1/2 years ago. Yes, there are ongoing problems with the socket, but not everybody gets that. One of our members, Fiona, who hasn't posted for a while, is in her twenties, and reckons (lucky girl) she's never had any serious socket problems after the first few months, when (like most of us) she had some blisters.

Since then she's done all sorts, including running (that is RUNNING; blimey), and regularly cycles long distances (up and down Cambodia on a charity ride, for example). I cycle too, but only a few miles at a time.

Point is that life doesn't stop 'cos a bit of you is missing, it's just one more darned problem to solve, just like the rest of life!

Ask questions. If we don't know the answers, we'll know who does.


Allen, bka, London.

[allenuk]

More from Denis85:

ok - thanks. i'm new here and i have planed to put my introduction on the forum but you did it. can you tell me yours experiece with amputation and prosthetic? i have never meet an amputee and now i will become one of them

[ann-]

Hi Denis

Welcome to the forum, my name is Ann and I had both legs amputated below the knee when I was a teenager., that was forty years ago, and I live a very full pretty normal life, which sometimes has its challenges, but everything is usually do-able.

My advice to you would be, if you are able, go and visit a local Prosthetic Centre and see if you can meet some amputees of a similar age, or, give them a ring and see if they have a peer visiting scheme where someone of a similar age and possible amputation level would be able to come and visit you, just to chat and for you to ask any questions.

Most Centres have some sort of peer visiting scheme in operation or if you are in the UK you could ring the Limbless Association as I think they also run one of these schemes.

[mom2noble]

Oh dear, its been too long since i've been on here. I hope you are doing well now. I assume that you've had your surgery. Ask all kinds of questions, and make sure you get help. Rehab and a really good prosthetist are a must! You are going to be great. You'll be walking, running, biking, all without too much issue! My 5 year old is a right bka from this summer (June) and people wouldnt know that he was an amputee with pants on. He tells me he doesnt come in last in PE as well. I'd like to see that, but I can tell you he runs really pretty well! Good luck to you. God Bless!

[romeo1414]

Dennis, I am a recent amputee, though mine was unexpected. I am currently attending rehab, and working with my prosthetics. I have been fortunate in that I have had some of the best care possible, but some of the best advice I can offer is as follows.

1) Keep a positive attitude
2) Ask as many questions as you can think of, ask why, ask how, question their reasoning...it is the only way you will understand
3) communication is KEY, tell your doctors, nurses, prosthetic person, whoever of any pain, discomfort or irritation. It is better to be over cautious than to be hurting
4) talk to people, whether someone who is an amputee or not, just find someone to vent to...dont bottle your feelings

[denis85]

hello, i'm amputated 20 days ago. it hurt like hell but it's not worse than mine bad leg. i have a lot of phantoms and it drive me crazy.

[allenuk]

Dennis:

Not saying this will definitely happen; all I can say that it does in my case.

When my stump hurts, I get phantom pains. When my stump doesn't hurt, I don't get phantom pains.

I'm sure there is a link, something to do with nerve endings (actual) being disturbed, which then sets off nerve endings (phantom) as well.

Are you on any drugs, or therapy, for the pains?

And was the operation straightforward, or were there any complications?

Tell us more. We may be able to offer some advice.


Allen, bka, London.

[kapteenkoukku]

Denis,

Phantom pains:

Did you have epidural block before the amputation surgery? It is said that it helps to trick (or de-trick) the brain so that phantom pains are less likely. Some people say that they had epidural block already two (2) days or so before the surgery so as to take full benefit of it. In my case I was asked whether I prefer the epidural block, general anesthesia or both just before the surgery when I was already being prepared for surgery in a room next to the operation theatre. I chose epidural and was fully awake during the surgery. Surgery did not take long, maybe about one hour. I do not have phantoms that I can recognise as phantoms but I do have occasional stings very seldom which may give me a mild jerk. I believe that once your wound has healed it is good to activate yourself and give your stump exercise in some form in order to keep the phantoms at bay. I started swimming once the wound had closed and did stump exercises and massaged my stump.

My experience:

My problems that lead to amputation begun five (5) years before the amputation. I had a simple sports injury, a torn achilles tendon that required wearing of cast among other treatments. It appears that I got some kind of a bug from the cast and my rollercoast ride started with ankle and foot swelling with infection. The area around my achilles tendon had to be opened up, the infectious fluid drained, the wound washed and antibiotic treatment given. It seemed that the first treatment did not clear the bug out of my tissue/ ankle and the infection started recurring more and more fiercly each time it hit me. I was hospitalised for cutting up my ankle for drainage/ washing about five times each year for two to three weeks each time with strong antibiotics dripping though my vein to the bloodstream. The antibiotics were strong and burned my veins away one by one so that there was difficulty to find new vains anymore and still today it is difficult to take any blood test from my arms as it is difficult to find a vein. The bug(s) that I had entered in my bone, first the cartilage of my ankle which was eaten away and they called it a septic arthritis. My ankle was trimmed and fused together with aid of big screws and resulted in about one inch shorter leg than the other side with stiff ankle. I had to start wearing a special shoe with a raised rocker sole. There was some optimism that the trimming some bone and cartilage away would have taken the bug but that did not turn out to be the case. The infections continued and I was having osteomyelitis. As there was no end to my ordeal and my leg had been cut couple of too many times with nothing else left but black scar tissue and very thin leg that I could no more use for walking, it was decided to cut the leg off. The surgeon who had treated me all the way from beginning of the infections cut the bones about four (4) finger widths from the knee leaving some soft tissue flap below the bones. I had hoped a little longer stump, but perhaps the surgeon wanted make sure that there is nothing left in my leg to attack it again and also they said that the length was optimal for fitting of prosthesis.

The amputation surgery went fine while I was awake, there was a curtain between me and the surgery site so that I could see only the faces of surgeons and nurses. I chose the epidural against GA because I had had GAs a couple too many from previous cuttings affecting my nervous system (dizzy spells) and also because the surgeon said that this amputation surgery is a piece of cake compared to those cuttings/ washings that took longer time in OT. I felt some rattling in my upper body when they cut through the bone and saw when they lifted of my leg, but I was pretty calm during the operation as I did not feel anything and knew that I will be better off soon. After surgery they transferred me straight to the ward as I did not need any recovery from anaesthetics, had my lunch, had my wife beside my bed and was wondering how it feels when the epidural wears off. That also turned out well, I did not have significant pains (I have quite high pain tolerance). As everything went well, I was discharged from hospital two days after the surgery. I went home with taxi, escorted by my wife. My first appointment at specialist clinic at the hospital to see my surgeon again was next day after the discharge and can you believe... I drove to the hospital myself with my wife as accompanying. I devised a tray to put under my stump so that the stump is straight and does not hang over the edge of the seat. I used crutches from very beginning and wheelchair only to move around the house so every time I went out with my car was without the wheelchair. I also started working using computer and internet, sitting in wheelchair in front of my computer right away after discharge from hospital. And as mentioned above, I started swimming once the wound closed. I drove to the swimming complex with my car and the rest is crutching to the sunbathing chair next to the pool and hop to the pool. My physiotherapist was against my swimming, she said I would go round in circles with one leg but I proved her wrong. I did exercises that I learned from somewhere that I should imagine that I am moving my toes up and down and stretch; I got to a routine that I did 100 ups and then 100 downs with a stretch. After that I massaged my stump with vibrator. Yes, and in beginning (as advised) I wrapped my stump with normal stretch bandage but later when I started my exercise routine I switched to Juzo shrinker sock which allowed me to use lotions underneath. There were also recommended exercises like thigh lift, knee bend, with and without rubber strap, etc. Plus the physio ofcourse. Finally my stump was considered to be ok for first prosthesis (about 2 1/2 months after surgery). It was with plastic socket, patellar tendon bearing (PTB) supracondylar socket. PTB means that large percentage of weight bearing is at the patellar tendon right below the knee cap. Supracondylar means that the leg is held in place with enclosing the curved knee area into a cup that curves along the sides of the knee, and no straps are needed for this kind of socket to hold in place. I was anxious to go back to work and on Monday following the week that I got my new leg I went off with public transport using bus and train. During the first week I had one shoulder crutch with me for moral support, but I thought it is only hindering my movement so I left it home the following Monday. And there it all started, I got later a new socket as the stump shrunk and I begun cycling, I cannot remember whether it was with the first socket or the second. First I couple of weeks I cycled shorter distances, about 10 to 15 km to and fro nearby park, but then I increased it to 50 km, which became my routine for every Sunday for a long time. I have not cycled now for couple of years as I have got too busy with work and also use the work as an excuse, but I think I really should get back to the same routine. I went back swimming again lately but not every weekend, at least I do 1500 metres if I go.

My advice:

Denis, I can see that you are still very young in your mid-twenties so you should be up and running better than us old farts very soon but you may also need some patience. I am now 54 and will be 55 this year, my amputation was done May 2001 so I will be 9 years amp very soon. I understand that the path is unknown and in young mind it raises much questions as the life is still ahead, the old farts may be emotionally more cool facing this situation but are at the same time not as fit as young ones are. My point is that if old farts can recover to be very functional then the young guys have no problem to recover and in fact are in better position for physical recovery.

I hope this helps.

[allenuk]

Like Jukka, I had local anaesthetics for the amputation, and like him, have managed to avoid phantoms since.

I would have thought that you (Denis) would have had the 'good' anaesthesia as yours, too, was a planned operation and not done in an emergency. But maybe those techniques aren't as common where you are, Denis. Where are you, and what sort of drugs did they put you on before, during and after the operation? Knowing this might help us give you better advice.

Allen, bka, London.

[mistymtnfarm]

I am also a new amputee right bka, mine was in November and I had horrendous phantom pain in the beginning for many weeks but they finally went away. I hope you are feeling better. I am 45 years young and I am already in my second socket and start back riding my horses next week. Had to go last week and get my socket adjusted so when I sat my saddle it didn't cut into my leg.
Attitude is EVERYTHING!! You can do anything you put your mind to. After spending 3 years and 14 surgeries trying to save my leg I finally figured out God had another plan for me. I am finally infection free and feeling better than I had in years and I am also in much less pain than I was before the amputation. Almost wished I had not waited so dang long but that is the past.

I hope you have a great prosthetic compnay that will work with you. I am very lucky and have found what I feel is one of the best out there.

If you need someone to talk to feel free.
Best of luck!

Dee in Alabama