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-   -   Ankle Fusion vs BTK Amputation (http://www.healthboards.com/boards/amputation-prosthetic/829473-ankle-fusion-vs-btk-amputation.html)

Tom Snow 12-31-2010 07:13 AM

Ankle Fusion vs BTK Amputation
 
When I was 18 I had a motorcycle accident (nearly four years ago) which left my leg in a bit of a mess; I had to have a muscle from my back totally removed and inserted into my leg to plug missing muscle tissue, my tibia and fibia were so badly smashed they had to remove approximately 4cm of the bone. I then had an exterior frame fitted to my leg which was under compression to try and get the breaks to cement together, another break was delibirately made below my knee on the tibia and fibia and the frame was then put under tension and extended slowly to make up for the loss of bone. When I was finally discharged I was still finding it incredibly difficult to walk. On closer inspection the surgeons found that I had the highest grade arthiritus around my ankle and lower ankle/foot joints. Back in June I had a triple arthrodesis, this is basically a fusion with metal pins between the joints in my foot/ankle (that allow your ankle to rotate and pitch left and right) to the main ankle joint. I was recently fully discharged with a final follow up appointment that deamed the operation was a complete success.
I am still having great difficulty getting around as my ankle is giving me a lot of pain, on top of this it is nearly impossible for me to walk up inclines. I went to see two consultants and they basically gave me two differing views. Either a pan talur fusion (fixing your main ankle joint to the tibia with metal pins) or a below the knee amputation. He did say that if I was to have the pan talur fusion I would need a rocker sole fitted to all my shoes to allow me to ''limp'' not walk, this would be because the foot would be tottally rigid.
I think that I would like to go down the below the knee amputation route as I think this would allow me to live an active lifestyle, like I did before the accident. Obviously I do not want to jump into anything without listening to other peoples views. Is the below the knee amputation the right choice? what is it like living with a prosthesis?

Kind Regards

Tom

ebird32 01-07-2011 05:00 AM

Re: Ankle Fusion vs BTK Amputation
 
[QUOTE=Tom Snow;4651085]When I was 18 I had a motorcycle accident (nearly four years ago) which left my leg in a bit of a mess; I had to have a muscle from my back totally removed and inserted into my leg to plug missing muscle tissue, my tibia and fibia were so badly smashed they had to remove approximately 4cm of the bone. I then had an exterior frame fitted to my leg which was under compression to try and get the breaks to cement together, another break was delibirately made below my knee on the tibia and fibia and the frame was then put under tension and extended slowly to make up for the loss of bone. When I was finally discharged I was still finding it incredibly difficult to walk. On closer inspection the surgeons found that I had the highest grade arthiritus around my ankle and lower ankle/foot joints. Back in June I had a triple arthrodesis, this is basically a fusion with metal pins between the joints in my foot/ankle (that allow your ankle to rotate and pitch left and right) to the main ankle joint. I was recently fully discharged with a final follow up appointment that deamed the operation was a complete success.
I am still having great difficulty getting around as my ankle is giving me a lot of pain, on top of this it is nearly impossible for me to walk up inclines. I went to see two consultants and they basically gave me two differing views. Either a pan talur fusion (fixing your main ankle joint to the tibia with metal pins) or a below the knee amputation. He did say that if I was to have the pan talur fusion I would need a rocker sole fitted to all my shoes to allow me to ''limp'' not walk, this would be because the foot would be tottally rigid.
I think that I would like to go down the below the knee amputation route as I think this would allow me to live an active lifestyle, like I did before the accident. Obviously I do not want to jump into anything without listening to other peoples views. Is the below the knee amputation the right choice? what is it like living with a prosthesis?

Kind Regards

Tom[/QUOTE]
Hi

Firstly, I totally sympathise with you!

In a nutshell, I had an accident 4 years ago one of the injuries I sustained was a grade 3 fracture of talus bone and then necrosis of the bone, I've had an straight forward ankle fusion which failed within 6 months. After a lot of effort and research, I changed clinics and found a specialist who would take my case on.

Anyway, in April 2010 I had a triple arthodesis (sp) and was promised improvement of pain, more mobility despite the fusion, and basically a better standard of life considering I'd pretty much lost mobility in both legs and was living day to day, dose by dose of tablets, I finally took the plunge and had the op. I was told that I could have a btk amputation, but as this surgeon was promising the world to me I went for the fusion option.

Anyway, 10 months down the line following surgery, I'm in a worse place than before. I've no flexion in ankle, I've slight movement in the joint. I'm on pain killers and again am living dose to dose, I'm even on morphine patches. I can use crutches for short distances, anything else then its a wheelchair job I'm afraid.

Been to the hospital today and told the surgeon that I'm not happy, I'm also getting pain in my hips, opposite leg and knee and also back. The surgeon says that fusion has occured and the position of the foot/ankle is fine and surgically it has fixed. I told him about the problems and unbelievable pain, his response was to try n cut down the pain killers. My response was that if I don't take my painkillers, I don't leave my bed as I cant put any weight on legs without them. I've described my life before my accident, I was very active, always in the gym and kept horses, competing in show jumping and cross country. I swam 4 times a week and also drove for a living. In comparison now, I'm unable to walk any great distance, gym is a no no. This whole thing has had a huge effect on my mental health causing agrophobia, depression, anxiety attacks. I'm a shadow of my former self.

I personally regret having the triple fusion done and wish that I'd of gone for BTK amputation. If there are no other options available in 6 months I'm going to request it as I can't carry on like this. This is no life for me at 33, In my head, its my ankle thats causing the main pain, I'll give it up! Yes, its going to mean mental adjustment, but it serves no purpose to me other than to give me pain. My car is fully adapted and automatic so I don't need legs to drive. Quite frankly, I cant see anyway around it.

I think I'd rather go without the leg and get used to it rather than to continue lugging around a leg that doesnt work and causes huge amounts of pain 24/7.

I don't know if my ramblings have helped you, but I just wanted to let you know that I get where you are coming from. You will know what is right for you.

Hope its helped :)

Tom Snow 01-07-2011 05:42 AM

Re: Ankle Fusion vs BTK Amputation
 
Thank you so much for sharing your experience.

I think you have confirmed now that I definately want to go down the BTK amputation route.

I am so sorry to hear about your pain and I hope that everything sorts it self out soon.

Kind Regards

Tom

K_Lana 01-26-2011 06:11 AM

Re: Ankle Fusion vs BTK Amputation
 
I too have thought about BTK amputation. I had a dr. suggest it to me before my most recent surgery as a way to get my life back.

I've had 5 surgeries(including the frame removal) for multiple ankle issues which have now turned to arthritis. I had an ankle distraction arthroplasty done in June with an external fixator. This was a last ditch effort to avoid fusion. I'm afraid with fusion I will be unhappy about the loss of ROM. I am a karate instructor and used to compete internationally in TKD. Running was also something I loved to do. I used to work out 3 hours a day. Now, I can't walk from one end of my house to the other. Our last vacation we went to visit a bunch of museums with the kids and I had to be in a wheel chair the whole time. I often think that if I had the amputation already I could have walked.
My problem is that after my last surgery I developed RSD/CRPS and I wonder if the nerve pain would increase with amputation. I know the joint pain would be gone, however.
I would be interested to hear what you all decide and how things progress. I have children who have told me that would be freaked out by amputation, but I know they can't enjoy their mom being in a wheel chair when they are out and about too.

ClaudiaJane 04-14-2011 08:39 PM

Re: Ankle Fusion vs BTK Amputation
 
Hello Tom and others in this thread,

It is great that I've found you, since I am in the same situation. My orthopedic surgeon is pushing for fusion surgery and after reading so much (in other forums) about complications, multiple surgeries, disappointing results from the fusion, I am leaning heavily towards BTK amputation as my best option. In fact, in my heart of hearts, I am almost certain this is the road I will take.

An auto accident in early October 2010 left me in an external fixator until the third week in November. Then came the Frankenboot. My other bones (arm, wrist, leg) have healed but I have AVN of talus (Hawkins Type III fracture). There is nerve damage pain but it is being helped with Lyrica, prescribed by my GP.

I have read a great deal about the "baloney" (below knee) operation and new techniques (ERTL, for one, but not limited to ERTL) help address the problem of phantom pain. I have spoken with a local man who had this done two years after his foot was crushed and he now leads a normal, active life.

Prothetics are better than ever with new technology. I am lucky to live about eight miles from a small town where a good orthopedics specialist is in practice. He spent an hour talking with me about what his patients do with a good fit and learning to walk again. People from all over the state of Pennsylvania and other states come to him.

I will be very interested to know what you all have decided and want to follow your individual stories.
Best wishes to all,
ClaudiaJane

K_Lana 04-15-2011 03:32 AM

Re: Ankle Fusion vs BTK Amputation
 
Hi ClaudiaJane,

Mt OS here does the Etyl procedure and they are all physically active now and running, etc. One is doing triathlons. My issue right now is family acceptance. I am having a hard time with that. I also worry about the rsd spreading or being so bad that I won't be able to wear a prosthesis. But, no matter what I do it could spread...
Good luck with your decision. How does your family feel?

ClaudiaJane 04-15-2011 05:15 AM

Re: Ankle Fusion vs BTK Amputation
 
K Lana, If your children are freaked out by a the BK amputation how do they feel about your not being able to lead a normal, active life? How young are they?

I can see why your ROM would be important with the karate and your other activities. All I want to do is walk around and be able to drive again because we live in a rural area and I value my independence. Also, my husband and I enjoy travel and I do not want to be restricted. Last summer we went to car shows and cruise- in our Shelby Cobra.

I"m sorry about the RSD and know little about it, although a friend was successfully treated for it several years ago and it never returned.

From what I understand about BK amputations, there is a way that surgeons can cushion the remaining part so that phantom pain can be eliminated.

I see my surgeon in a couple of weeks for a CT scan and have an appointment for a second opinion from another well respected orthopedic surgeon.:wave:

Cheers!
Claudia

ClaudiaJane 04-15-2011 05:22 AM

Re: Ankle Fusion vs BTK Amputation
 
[QUOTE=K_Lana;4731154]Hi ClaudiaJane,

Mt OS here does the Etyl procedure and they are all physically active now and running, etc. One is doing triathlons. My issue right now is family acceptance. I am having a hard time with that. I also worry about the rsd spreading or being so bad that I won't be able to wear a prosthesis. But, no matter what I do it could spread...
Good luck with your decision. How does your family feel?[/QUOTE]

K Lana, My husband is very supportive in whatever decision I make. I am fortunate that he has such an open attitude. We have no children but I am an "adopted" grandma to two young boys (5 and 7) who live nearby. They are very matter of fact about my injury, and sometimes use my walker to "play Claudia" which is amusing.

One of our cats had his tail amputated by the vet, and they asked why he had no tail. I said "because Earl Grey was sick and the doctor had to cut his tail off to make him well again." They agreed that it's good that the cat can be well and run around and play again.

ClaudiaJane

K_Lana 04-15-2011 06:31 AM

Re: Ankle Fusion vs BTK Amputation
 
Claudia,

Good luck with your second opinion.

My kids are 10-19. Some would do okay, I have one daughter that I know would be freaked by it. SHe said that was one of her biggest fears. But in time, I think they would deal with it. It's more my husband I worry about. He is just not on board at all.

The ertl amputation makes a bone bridge, but with rsd, I'm just not sure how much the nerves can handle. I have some time to think about it though. Right now I'm still on antibiotics for osteomyelitis in my tibia from my external fixator from the last surgery. So nothing can be done until that is healed. Then I have to wait for the rsd to calm down and in June I'm seeing a geneticist for Ehlers-Danlos syndrome which could also contribute to my decision making of replacement vs. amputation. Then I see my rheumatologist and then finally in June my OS to discuss this all. Hopefully by then things will be back on track and I'll have some more answers. I just feel like my life is being wasted by all this waiting though. Last summer I spent on the couch with the external fixator on and missed the pool and beach. I can't travel with my husband or really take any type of vacation with the family right now. I can't even go shopping with my girls. I want a normal life where I could walk at Disney World, shop with my kids, go on vacation with my husband, and walk. I would love to be able to walk without pain.

Keep me updated about your appts. It is great your family is supportive. That makes it SO much easier.

Kris

ClaudiaJane 04-15-2011 03:40 PM

Re: Ankle Fusion vs BTK Amputation
 
Hello Kris

You can call me Claudia; the Jane part is only the addition of my middle name and I added it when they already had Claudias on this forum.

I hope your RSD problem gets resolved as soon as possible. My friend who had it said it was terrible, she still has scars on her legs this many years later. Her boyfriend happened to catch a taxi in San Francisco with someone who was an expert on the condition and because of that chance incident she is free of it and has been for years. Ah, so many things happen to us and not altogether by chance, don't you think?

I am 65 years old, recently retired, and didn't feel old at all until my accident. My husband and have been very active up until now. So I do not have time to waste with surgeries which are a higher risk the older you get.

How did you injure your foot? Mine was crushed by the car's engine, which came through the fire wall, in a bad auto accident.

I do hope that your husband will become more accepting of the situation and think more along the lines of my spouse.

Today was actually spring-like weather after an unusually long and cold winter where we live. I was able to out for pleasure for a change in a multi-stop day, instead of just another doctor's appointment. IGreat for the morale but I'm bone tired now!

I arranged with my surgeon's office of records to fax over all my Xrays, operation descriptions and office visit summaries to the 2nd opinion orthopedic surgeon this afternoon. After she reviews them her secretary will call me to make an appointment if she feels she can be of help. At least she isn't wasting money unncessarily.

Claudia

K_Lana 04-15-2011 06:14 PM

Re: Ankle Fusion vs BTK Amputation
 
Hi Claudia,

I hurt my ankle sparring in karate. I was told it was "just a sprain" by the head of orthopedics here at a big teaching hospital. 5 years later and 6 surgeries later I'm looking at amputation. That was some sprain!

I hope you get to see the second surgeon. I've had 3. The first one left the practice after my first surgery and my second did surgeries 2,3, and 6. I went to Baltimore for 4 and 5. I found that some doctors are very much by the book and won't look at your total life situation. My dr. here, sees me as a person, with a life to live and not just an ankle attached to no one.

Keep me updated with what you find out. I hope to talk to someone who does prosthesis here soon, a friends, husband actually. It will give me more insight on the other side.

ClaudiaJane 04-15-2011 06:20 PM

Re: Ankle Fusion vs BTK Amputation
 
[QUOTE=K_Lana;4731154]Hi ClaudiaJane,

Mt OS here does the Etyl procedure and they are all physically active now and running, etc. One is doing triathlons. My issue right now is family acceptance. I am having a hard time with that. I also worry about the rsd spreading or being so bad that I won't be able to wear a prosthesis. But, no matter what I do it could spread...
Good luck with your decision. How does your family feel?[/QUOTE]

Hello Kris,

I hope your RSD problem gets resolved as soon as possible. My friend who had it said it was awful and she still has scars on her legs many years later. Her boyfriend happened to catch a taxi in San Francisco with someone who was an expert on the condition and because of that chance incident she is free of it and has been for years. Ah, so many things happen to us and not altogether by chance, don't you think?

I am 65 years old, recently retired, and didn't feel old at all until my accident. Oddly enough I don't even feel particularly old at present, now that the initial recovery period for all my broken bones has passed. (Except for the talus, of course.) My husband and I have been very active. I do not have time to waste with surgeries which are a higher risk the older you get.

How did you injure your foot? Mine was crushed by the car's engine, which came through the fire wall, in a bad auto accident.

I do hope that your husband will become more accepting of the situation and could begin to think more along the lines of my spouse.

Today was actually spring-like weather after an unusually long and cold winter where we live. I was able to go out for pleasure for a change in a multi-stop day, instead of just another doctor's appointment. Good for the morale but I'm awfully tired now.

I arranged with my surgeon's office to fax all my Xrays, operation descriptions and office visit summaries to the 2nd opinion orthopedic surgeon this afternoon. After she reviews them her secretary will call me to make an appointment if she feels she can be of help. At least she isn't wasting money uncessarily.

Good luck to you - and to the others who are posting, as well as any who may be lurking.

Claudia

xbigfootx 08-20-2011 09:40 AM

Re: Ankle Fusion vs BTK Amputation
 
Hi Tom - I'd love to hear what you decided in the end. Hope this turned out ok. I'm in the UK and looking at similar options. Would be great to hear from you.

Tom Snow 10-30-2012 06:10 AM

Re: Ankle Fusion vs BTK Amputation
 
Been a while since I have been on here. in view of some recent posts I thought I would give you guys an update about how things went.

I did decide to opt for the amputation route and after some minor complications regarding the rehab I had the operation November 2011.

After coming round from the anesthetic I felt instant relief, (maybe it was all the painkillers) but I think it was to do with not having that useless foot attached to me any more haha.

After spending a week in Hospital to allow for some recovery and the nerves to get use to nothing being there. I started the rehabilitation process. it took me approx 6 weeks of full time rehab to go from being in a wheelchair to walking unaided with a prosthetic limb.

It has now been a year and I feel I have a new lease of life, I can do everything I could do before: drive, walk for hours on end, rock climb, swim, cycle and am even having ski lessons.

Whilst I can appreciate that having an amputation will not be for everyone and would not like to recommend it as there are certain risks that thankfully I managed to avoid. I can try and answer any questions that people out there in a similar position may have.

Feel free to ask me any questions and I will try to answer them.

All the best

Tom

xbigfootx 10-30-2012 06:38 AM

Re: Ankle Fusion vs BTK Amputation
 
thanks for the feedback Tom. Congrats on a successful and brave op. Good luck for the future. Looks like my condition is more rheumatoid related so still struggling.


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