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
The following user gives a hug of support to Tom Snow: K_Lana (04-15-2011)
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
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
The following 2 users give hugs of support to: ebird32 ClaudiaJane (04-14-2011), K_Lana (04-15-2011)
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.
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
The following user gives a hug of support to ClaudiaJane: K_Lana (04-15-2011)
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?
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.
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?
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.
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.
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
Last edited by moderator2; 04-15-2011 at 04:11 PM.
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.
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?
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.
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.
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.
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.
Tom, if you are still around I would like to ask you a question or two. I'm on this board on behalf of my husband, who is really struggling with foot pain and decreased activity after two foot surgeries. He sees himself now having severely reduced activity, no longer being able to walk for more than a few minutes at a time, for the rest of his life. None of his doctors have ever mentioned amputation -- they just talk about repeat surgeries and waiting for some day when the perfect ankle replacement joint will be invented. But I am wondering about it because the time he needs quality of life is NOW, not later, and he would desperately like to be the active person he used to be (he's 44 now). I am curious about two things -- what major risks do you refer to when you say you were lucky enough to avoid them, and what is your sober assessment of the level of activity you have been able to achieve now? I guess anything else you might like to say to me I'd like to hear too. Of course it is not me that has to do the thinking about this, ultimately it's my husband. Thanks so much for any wisdom you can provide.
I too am hopeful you'll give us an update, Tom. I've had 10 ankle surgeries. Most recently I had a STAR ankle replacement. A few years ago I had a fusion and it was fine, until my surrounding joints started to fall apart. My doc told me the STAR would give me back the ROM, thus taking some of the pressure off of my surrounding joints. The STAR was a total failure. I'm in more pain - both my ankle AND the surrounding joints - than I was before the replacement. Unfortunately, my doc doesn't want to admit that and said I need to stop whining. So I went to another doc, who agreed that the replacement failed miserably and I need revision surgery.
I've been semi-incapacitated for my daughter's entire life (she's 10). I used to be a competitive bodybuilder, aggressive skiier, and aerobics instructor. Now I have to ask my mother - age 77 - to slow down when we walk together.
I first started joking about how I should "just have my ankle amputated because at least then I'd be able to be active", not realizing this was an actual possibility. After years of looking into it, and numerous unsuccessful surgeries, I'm really really leaning towards the BTK amputation. Who cares about having 10 toe nails to paint if I can't ski / dance / hike / walk??????
I can't live life this immobile. I will keep trying until something either works or kills me.
The following user gives a hug of support to panhines: fleafly (04-10-2013)
Hello everyone. I'm much like panhines and Katprof's husband in that the person I once was seems far in my past due to all the orthopedic issues I have had most of my adult life. Never mind my knee problems, hip problems, or arm problems. Even with the 17 surgeries I have had for those problems, they don't stack up to the impact the foot problems have caused. After years of gradually giving up one thing after another, I no longer hike, walk, bike, engage in countless sports, do gardening, mess with projects around the house, and so on. Even as a 60-year-old, I just cannot imagine being like this for the remainder of my life. I'm sedentary, isolated, and not very happy. I want to find a way to recover some of my mobility but not by having surgery after surgery. I have enough of all of the surgeries.
In 2010 I had a midfoot fusion that failed three months after I got out of the boot. The surgery was then repeated in 2011. I'm now 18 months post-op and the midfoot has collapsed again and has caused the chopart joint to collapse along with it. After getting multiple opinions from very reputable surgeons, the general consensus is that my best option is to have my entire foot fused. Assuming I have it done, and that this procedure finally works, the fusion will essentially create a brick at the end of my leg. Is this something that will improve the quality of my life? It will most likely reduce the pain, but will it allow me more function? This is where I could use some insight from people who have either gone through this type of procedure, or who might have insight to this type of situation.
I wonder if this fusion surgery is simply another step towards a BTK amputation. To avoid another failure and all the time lost, would I do better to simply have the amputation? Sure, amputation introduces other complexities to my life, but having a brick for a foot does too. I want to improve my mobility and return to some of the types of activities that I used to do, not be in surgery, recovery or rehab mode over and over again.
Any opinions or comments would be greatly appreciated. Thanks much!
Hi I also had the STAR ankle replacement and 4 surgeries that failed and recently had the STAR removed and the InBone II put in my Dr Haddad of Glenview, IL. I am just wondering how you are or what they said the reason was for it to fail. He said I never should have had the STAR as it was not right for my ankle. I am trying to find anyone that has also had this problem to talk to.
Thanks,
Trudy
Quote:
Originally Posted by panhines
I too am hopeful you'll give us an update, Tom. I've had 10 ankle surgeries. Most recently I had a STAR ankle replacement. A few years ago I had a fusion and it was fine, until my surrounding joints started to fall apart. My doc told me the STAR would give me back the ROM, thus taking some of the pressure off of my surrounding joints. The STAR was a total failure. I'm in more pain - both my ankle AND the surrounding joints - than I was before the replacement. Unfortunately, my doc doesn't want to admit that and said I need to stop whining. So I went to another doc, who agreed that the replacement failed miserably and I need revision surgery.
I've been semi-incapacitated for my daughter's entire life (she's 10). I used to be a competitive bodybuilder, aggressive skiier, and aerobics instructor. Now I have to ask my mother - age 77 - to slow down when we walk together.
I first started joking about how I should "just have my ankle amputated because at least then I'd be able to be active", not realizing this was an actual possibility. After years of looking into it, and numerous unsuccessful surgeries, I'm really really leaning towards the BTK amputation. Who cares about having 10 toe nails to paint if I can't ski / dance / hike / walk??????
I can't live life this immobile. I will keep trying until something either works or kills me.
So Trudove, you went to IBJI to see Dr. Haddad. There are 50 or more doctors affiliated with IBJI in the NW Chicago area. I recently saw a different doc - one that specializes in the foot rather than the ankle, which seems to be Haddad's specialty. This doctor recommended the triple arthrodesis and repair of the midfoot fusion (again.) He is somewhat optimistic that he can "fix" my problem so that I have less pain. This doctor also conceded that amputation is an alternative, but I think he would be happier doing the fusion than the guillotine amputation he would do (unless I insisted that he do an Ertl procedure.) As several people in this thread have mentioned, doing a fusion puts extra stress on nearby joints, thereby expediting further surgeries. And, the fusion surgery doesn't really have a high probably of success. That leads me to more surgeries, too, and that's the last thing that I want.
I wonder what your thoughts are about Dr. Haddad, and what lead you to him. I, too, was given his name, but I opted for a doctor that does more surgeries of the feet than Dr. Haddad. There is another IBJI doctor - a third doctor - who does Ertl amputations. I am thinking about seeing him for another opinion. I don't want to bounce from doctor to doctor, but I need an accurate diagnosis, a solid approach for treatment, and confidence and comfort with the doctor who will do the surgery.
__________________ Best wishes to all, FleaFly
"The way I see it, if you want the rainbow, you gotta put up with the rain." ~ Dolly Parton
