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Old 07-18-2007, 06:13 PM   #1
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penybobeny HB User
Talking Amputation once more...

Hello there... I have posted off and on through the years about my left ankle and foot... a quick recap-

10/16/98- hit toe on speed bump, flipping foot and all weight going on top instead of sole, tore posterior tib tendon lose with a bit of bone

Since then I have had 19 major surgeries- calcanial ostyotomy, posterior tendon repair 3x, triple tendon transfer 2x, calcanial osytotomy with collum lenghtening (2nd ostyotomy), non-union repair and internal bone stimulator, triple arthodesis... the list goes on and on... I have had 22 screws and 7 plates put in and taken out at various times and a number of small proceedures such as sural nervectomy with re-direction (trying to manage pain)

The bones in my foot are rock solid now (albeit not the way nature designed them to be) but the muscles, tendons, ligaments and nerves have all been moved, torn, repaired, torn again, replaced with others from somewhere else on my body, resorbed, stretched and have given out.

They can replace the joint, but there is no muscle or tendon support... right now I can slide my foot from side to side without moving my leg at all with a fingle finger. There is less stability now than before my fusion last year and I am more than ready for an amputation. Pain management has been a nightmare, I cannot take narcotic pain killers due to intolerance and cannot take tylenol, advil or alieve die to liver issues... live and bear it got old years ago.

I already have experience with phantom nerve pain, my sural nerve was cut and redirected into my achiles tendon years ago, so when the outside of my foot itches I know that rubbing my tendon will stop the itch. Phantom foot pain will be dealt with the same way... it is not there so accu-pressure will be used on the stump along with TENS.

They are going to try one last brace (my insurance insists on it) then removing my foot within the next few months... even as I get fitted for the brace the surgery is being scheduled. Do I want it to happen.... do I want to lose my foot...? Not really, but the thought of dancing at my children's weddings and walking on the beach (I live on the coast and have not been able to walk along the shore since I was injured) sounds like heaven... that and having a stable leg and orthodic under me... I have not had a day without pain and with stability in almost 9 years now and I am more than ready to get on with my life.
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Old 07-18-2007, 08:06 PM   #2
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Re: Talking Amputation once more...

Pen-

I am all at once speechless and saddened, yet somehow oddly comforted by your upbeat personna in such a horrific situation. Such a simple sounding boo boo ends up in a nightmare of difficulties leaving you no option but to cut off what offends thee. I know there is nothing anyone can say to sway you one way or the other - we have no right to even try. I know you have been looking at this option a long time and it sounds as if it is finally here. I say good for you if it ends your pain and disability. If there is anything in the world I can do you just thump your crutch and i"ll come running (ok make that walking awkwardly, but I'll come just the same). I may not be much use to some, but I always have the snide remarks and witty banter if you need it. Have you thought of what prosthetic model you are going to get yet? It is like the ultimate shoe shopping in a weird way, eh? And think, you will be able to donate all those accumulated braces, crutches, orthotics and other assorted hardware!!! Where are you getting the surgery done? How long is the stay - all the ususal questions so we can lend our 2 cents (what else are we good for?)

When I go to the beach I will look for the bionic foot. You look look for the scars on me. Sometimes this board should let us all meet even if it is against the rules - just for times such as this.

A huge hug (that lasts a long time)-
jane

 
Old 07-20-2007, 10:37 AM   #3
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wtwct HB User
Re: Talking Amputation once more...

You have a rough decision to make. It sounds like this foot has caused you not to move on with your life.

I was up for amputation two months ago. I decided to try another reconstruction. (Mine did not sound as bad as your foot does).

It is hard to think that you could live a normal life without the foot. I think that you have had to deal with a lot and no one can make the decision for you.

Before I was up for amputation, they gave me a site that you could go to. This company will send you books, videos and information on the prosthetic leg/foot. I was going to use the C-Leg. It is suppose to be comfortable and it even has shock absorption. (It has a cover so that it looks like your own leg) It is made by Hanger Prosthetics. I would contact them. They are very supportive and give you a lot of information that you need.

I hope this information helps. Please let us know what you decide or what your thoughts are on this.

Praying for you!!! Julie

 
Old 07-20-2007, 11:45 AM   #4
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alexbaby16 HB User
Re: Talking Amputation once more...

I am so sorry to hear of your problems. I can't imagine having to deal with all that you have gone through. I guess my feeling sorry for myself and the current pain I am dealing with (Posterior Tibial Tendinitis in left foot, Posterior Tibial Tendon Repair, FDL Transfer and bone excision in right foot) is so minor compared to what you have had to deal with this last year. I wish you all the best of luck.

 
Old 07-20-2007, 06:13 PM   #5
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penybobeny HB User
Re: Talking Amputation once more...

Quote:
Originally Posted by jprinz99 View Post
Have you thought of what prosthetic model you are going to get yet? It is like the ultimate shoe shopping in a weird way, eh? And think, you will be able to donate all those accumulated braces, crutches, orthotics and other assorted hardware!!!

jane
Jane,

Luckily, I know who will be making my prosthetic, Hanger... they have made many of my customized orthodics over the years.

I don't know if anyone will want my used braces, boots and so forth, they are all pretty worn, but I have a closet full of left shoes that have never been worn! One thing I have thought about doing in the past is getting something organized for the "Great World Shoe Swap", basically it is for people who end up in casts and boots and so forth so that they can trade unused shoes... in other words a brand new size 8 right tennis shoe for a left one and so forth. That way you don't end up with pairs of shoes with uneven wear. (It is important to have even wear in your shoes, especially after surgery and wearing a cast, even slight wear can be enough of a difference to throw off your stride)
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Old 07-20-2007, 06:24 PM   #6
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wtwct HB User
Re: Talking Amputation once more...

Peny: How are Hanger Orthotics. My PT makes my orthotics and I feel like I have a big boulder in my shoe.

 
Old 07-20-2007, 06:27 PM   #7
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penybobeny HB User
Re: Talking Amputation once more...

Quote:
Originally Posted by wtwct View Post
It is hard to think that you could live a normal life without the foot. I think that you have had to deal with a lot and no one can make the decision for you.

Before I was up for amputation, they gave me a site that you could go to. This company will send you books, videos and information on the prosthetic leg/foot. I was going to use the C-Leg. It is suppose to be comfortable and it even has shock absorption. (It has a cover so that it looks like your own leg) It is made by Hanger Prosthetics. I would contact them. They are very supportive and give you a lot of information that you need.

Julie
Julie,

Luckily, I am very familure with Hanger... I have had custom orthodics made with them for years. I even have discussed the artwork that I want on it... I am going to embrace it as a tool and not worry about it looking natural.

This decision was not an easy one to come to, it has come after many heart to heart talks with my husband and family. There is a strong chance that I will still have pain, but I feel that I can handle the pain as long as I have a stable feel on the ground. I have even been lucky enough (I am not sure if lucky is the right word here) to have met and known people with prosthetic legs who were very open to talking about their experiences using it in daily life.

My case is an extreme case... I just happen to be unlucky enough that everything that can be done has been done surgically. Even when my new brace was fitted yesterday the Surgeon who ordered it wrote on the request that was faxed to my insurance (they rushed the approval) "reason- severe instability...prognosos- poor". I would urge anyone that is looking at what I am to get second opinions, to make sure that there is not another surgical option. Amputation is always the last resort.
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Old 07-20-2007, 06:31 PM   #8
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Re: Talking Amputation once more...

Quote:
Originally Posted by wtwct View Post
Peny: How are Hanger Orthotics. My PT makes my orthotics and I feel like I have a big boulder in my shoe.

They are wonderful, they will work on your orthotic until it is comfortable, one that is not fit right will never work. The whole idea of an orthotic is that it should support, comfort and stabilize and after you take a few steps and get used to it you should not even be able to tell that it is there other than your stride improving.
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Old 07-20-2007, 06:49 PM   #9
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penybobeny HB User
Re: Talking Amputation once more...

Quote:
Originally Posted by alexbaby16 View Post
I am so sorry to hear of your problems. I can't imagine having to deal with all that you have gone through. I guess my feeling sorry for myself and the current pain I am dealing with (Posterior Tibial Tendinitis in left foot, Posterior Tibial Tendon Repair, FDL Transfer and bone excision in right foot) is so minor compared to what you have had to deal with this last year. I wish you all the best of luck.
Alex-

First a huge hug... then...

This is not a contest, believe me... there is no prize for having the most or the worst... your pain is very real and what you have gone through is very real, every bit as real as anything I have gone through. You have every right in the world to feel the way you feel... heck, I give myself a pity party every once in a while complete with a cookie! There are people out there that have it alot worse than me, but that does not mean that what I am going through is not as real to me... what you are going through is just as real to you.

The proceedures you have had are very painful and recovery seems to feel like it takes forever. Just remember that you know your body better than anyone and if you think something is wrong then make sure that you are heard... small things can become big if you do not keep on top of it.
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Old 07-21-2007, 06:49 AM   #10
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jprinz99 HB User
Re: Talking Amputation once more...

Pen-

Physicians for Peace accepts old braces, etc. They use them on their missions (even if just to scavage for parts).

What colorartwork are you going to get on the new leg? Enquiring minds want to know (and give their 2 cent)... About how long till they think you will be able to walk without support? Are you going to a rehab center to get used to it?

I am just so full of questions. I feel as if I am the nosey sister since we have all been on this board togethr for sooo long!

 
Old 07-22-2007, 09:20 PM   #11
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penybobeny HB User
Re: Talking Amputation once more...

Quote:
Originally Posted by jprinz99 View Post
Pen-

Physicians for Peace accepts old braces, etc. They use them on their missions (even if just to scavage for parts).

What colorartwork are you going to get on the new leg? Enquiring minds want to know (and give their 2 cent)... About how long till they think you will be able to walk without support? Are you going to a rehab center to get used to it?

I am just so full of questions. I feel as if I am the nosey sister since we have all been on this board togethr for sooo long!
Ok, I will have to get all my spare's together and take Physicians for Peace a van load of things then... thanks for the idea.

There is one pattern that I like... it is dolphins playing... but I might be able to have a special bit of art done instead, I will know more when I am closer, and if I can I have a tatoo artist who will do the artwork for me... a Unicorn (winged unicorn) flying free, a shackle on one hind leg with a chain hanging broken from it and an anchor with the other end of the broken chain at the base. The symbolism... something wild and free that was once held down breaking free and escaping to the future.

Different insurance companies offer different things, some will send you to a rehab hospital and others will prefer out-patient. I will not even be fitted with a prosthetic until the wound has healed and swelling is down, this may take weeks or months depending on how fast and well I heal. Then, once again, it will depend on the fit of the prosthetic and work with the makers and PT to learn how to use it and adapt to it.
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Old 08-09-2007, 05:52 PM   #12
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lostmary HB User
Re: Talking Amputation once more...

Pen,
I'm sorry things have turned out the way they have. I also was on the road to amputation, but I decided to hold off. well, 3 years later I don't know if it was right or not. I now have RSD and have chronic pain. I live on pain meds and other heavy duty meds. I'm very unstable on my feet and have fallen and broken the toes on the other foot, and ripped all the ligaments. Now I will never be able to function without the drugs, and rsd can spread. when it does, it could leave me unable to move anything but my eyes. and even then the sight goes. Would I have RSD if I had the amputation. there is no way to tell. hindsight is always 20/20. Take care
Mary

 
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