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Julie F

Introducing myself - not an amputee yet but will be soon

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Hello everyone, my name's Julie and I'm not an amputee yet but at this stage, I'm thinking that a BKA may be the best hope for me to have an active and mobile life

Here's my story:


I've just turned 50.
I had a very serious left ankle injury in 1992.. I had 2 bone grafts, 14 screws and 2 plates put in.. At the time they were worried that I would lose my foot but the surgery went well and healed well - the metal work was removed in 1996..
All was well for almost 20 years, with the occasional pain when I'd done a lot of walking or walked on uneven ground then at the end of 2011 I started getting very bad ankle pain..
It was diagnosed with an X-ray as post traumatic osteoarthritis and I had my left ankle fused in February 2013..
The fusion healed but the pain has remained exactly the same as it was before the op and I still have a lot of swelling..
I went back to my surgeon a year later (I was told to wait a year) and after another X-ray, he decided to do a sub-talar fusion..
The waiting list was long so my case was subcontracted out to a surgeon in the private sector who said that he wasn't convinced that I needed the sub-talar fusion.. He removed the metal work in December 2014 and that also healed well but left me with exactly the same amount of pain..
I had a CT scan at the start of 2015 and was told that they couldn't find anything that could be causing the pain and the orthopaedic team discharged me and told me to go back to my GP and to the pain management team..

I sat around in pain for a few more months and then decided to ask for another orthopaedic referral as I couldn't accept that this was it for me, for the rest of my life.. Before this I was very active and loved walking in the countryside, doing yoga, dancing and generally getting out and about. With the level of pain I have now, none of those things are possible.

In August I saw a new orthopaedic surgeon and finally, I feel as if someone has listened to me..

I told him that this has now gone on for almost 4 years and it's no better, I'm sick of immobility and constant pain and after researching my options, I've been thinking that a below knee amputation may be the best option for me to get my life back.. I had an Xray and he says the ankle is a mess and is getting worse and he agreed with me so the plan is to do one more steroid injection to see if a subtalar fusion would help and if it looks as if it won't or if I decide I don't want that as there's no guarantee it would help and I may end up with problems in the other joints in my foot if I do that, then we'll go with chopping the bloody thing off...
I'm relieved and happy with that..
I'm hoping that this is a glimmer of light at the end of the tunnel..

My steroid injection is scheduled for this Friday and I'm hoping that after that we can start planning the surgery.

I've looked through some threads here and I'm wondering if there's anyone who's still active on this board who had an amputation electively, following fusion surgery or as a solution to chronic pain.

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Hi Julie,

I can relate oh so well to your story although mine only went on for three years before I opted for a BKA. I was in a bad car accident--the woman was not looking where she was going. I was in hospital for two week, but the swelling had to g0 down. The orthopaedic surgeon I drew (was flown back to Canada by air ambulance and he was the surgeon on call--bad choice) He was a really bad doctor as even though the doctors in Boston, where I was injured, said I would need surgeon. This guy's pronouncement was, "well, I dunno what I would operate on." I finally became such a headache for him he transferred me to the ankle specialist. It was like night and day--this fellow was GREAT and as soon as I was transferred I had surgery within in the week. It was plated and screwed, but it never really healed and I was in pain and in a wheelchair. About 4 months later he decised an ankle replacement was the key--no such luck. Finally he decided to fuse it--the cure all he told me--no such luck. He was a great surgeon and a great doctor, so I couldn't blame the surgeries. Once again the surgery failed. I was fed up with being in a wheelchair--my boss refused to do any kind of accomodation to allow me to get into work except by crawling--that is another whole story. I decided my best bet was an amputation, but my doctor thought that was too radical--he questioned whether I realized it was forever--ugh yes! He scheduled an appointment with the amputation doctor who evaluates for amputation and by good fortune I never got to see him before my surgery as I know he would have said NO from a later encounter. I did lots of research, talked to the Prosthetic department (prosthetics were under a provincial plan) . They were great and encouraging. So, I had the RBK amp and have never looked back. In fact I went to see the doctor 18 months later doing very well and he said to me, "We probably should have done this 2 years ago!"

Like you I was very active and was more than fed up being in a wheelchair. Even though the first year was tough, I have regained my life. I have totally renovated my house (95% myself), I care for my yard and I got back to leading tours to Viet Nam (I was a nurse in the American War and fell in love with the country and people) :biggrin:

So, there are some things I am working on like getting back to Rock Climbing--but it is coming. And I am no spring chicken at 69. I found the trick is don't let others tell you what you can/are able do as my friends have not been correct. If I think reasonable I can do it--I do it.

OIn your research be sure you at the Amputation Coalition http://www.amputee-coalition.org/and https://www.facebook.com/AmputeeUSAThey hold a conterence each year and the first one I went to gave me my life back. Next year June in Greenville, NC

Yesterday I got a new foot which is more technology advanced and although each new foot takes getting use to, I already love it and feel more secure. If you have more questions please ask.

Peace, Beth Marie Murphy, Kamloops British Columbia

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Hi, Julie -

My story does not live up to Beth Marie's...she's a wonderfully active woman!...but I'm also an elective BK amp. Mine was due to a nearly impossible to repair fracture in my left foot. After several attempts to get a successful repair tothe fracture, I developed an infection (MRSA) that sent me into the hospital. Once that was brought under control, I was given a choice: yet another attempt at fixing the fracture, this time with many, many months in a cast, or a below-knee amp. It didn't take me long at all to decide to go for amputation as, like both of you, I was tired of being in pain and stuck in a wheelchair. (I can say that my own employer was actually very cooperative about trying to accommodate me, though.)

It took me several months and some really odd complications, but once I really recovered from the amputation surgery I was able to get back to a normal and reasonably active life, without pain. I consider losing my leg one of the better choices of my life!

All the best to you in reaching a decision that will be good for you!

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Motivated, no driven by pain I had a below the knee 6-27-15. I wish I could say that the pain was eliminated and mobility restored. Four months into recovery from surgery and only one week with the prosthetic, riding the emotional roller coaster, the pain is not totally eliminated, the walker is still a requirement. Damned impatient!!! I'd sure do it again in a heart beat but its not a panacea. I get 5 hours working in my shop building an airplane but mostly working from the wheelchair, use ramp and wheel chair to get over the steps into the house. Do make sure you get a good prosthetics person. The prosthetic fit is vital. Go for it, good luck!!

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Thank you all for the lovely welcome and for all of your replies, it's just so nice to read stories from people who chose to get rid of their lower limbs and haven't regretted it (not that I've found many stories from people who have regretted it).

I probably should have said that I'm in the UK so everything I'm dealing with also includes the NHS, which is a wonderful, wonderful thing but is very slow, hence the 4 years I've had with this so far.

I belong to an on line ankle fusion group and a Facebook group of amputees in the UK and they could not be more different. The ankle fusion group is full of people talking about their ongoing problems, the fusions that haven't worked, the pain they're still in, their next fusions and long term pain relief whereas the people in the amputee group talk about problems too but most of their posts are about getting on with their lives and actually living.

I know which option is the most appealing to me now after going through this for so long and with no end to it in sight unless I choose amputation.

BethMarie, thank you for those links, I already follow the Amputation Coalition Face Book page but things are so different here to over in the US and Canada that a lot of the stuff written there doesn't tend to apply to me or is just so different to how things are done over here that it gets confusing.

Yesterday I had a steroid injection into the subtalar joint and spoke at length to my surgical consultant (head of my surgical team for those not in the UK). He's referring me to the amputation rehab team so that I can discuss with them the sort of thing I can expect afterwards, let them know that I'm aiming for as much mobility as possible etc and to see if they think I'm a good candidate for this (my mind is already made up).

I came away feeling quite positive. My surgeon said that the amputations he usually does are 'rush jobs' but with this one, if we're going to do it he wants to plan carefully so that I'll get the best result possible..

I have problems taking pain medication as opiates are migraine triggers for me. When I had my fusion 3 years ago I told the anaesthetist this but he didn't take me seriously as I knew as soon as I woke up that I'd had some sort of opiate in with the anaesthetic and was ill for about 3 days post op and couldn't wait for them to send me home so that I could deal with a killer migraine away from the bright lights and noise of a hospital ward. This time the pain management team are hopefully going to be involved from before the surgery so that won't happen again.

I just want this foot gone now, I've had enough of this ankle, it's an absolute nightmare and I feel that a decent prosthesis has to be better than this.

aeroads, thanks for the advice and I hope you start to get more and more mobile and pain free as you get used to your new prosthetic.

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hello:)

i am new to the site, and like you had an elective amputation ("elective";-)) due to damaging and semiaputating my foot because of an accident 16 years ago. wish you all the best

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Just a very quick update..

Things are moving along.. I have a date for my elective, below knee amputation - May 20th 2016..   I'm looking forward to it.. I'm so sick of the pain that I'm in that I'd happily have the surgery tomorrow if I could but in the UK things move slowly.

So I'm all set.. I have my wheelchair, I've met and spoken with my rehab team; consultant, head nurse, physiotherapist and occupational therapist, I had my pre-op assessment last week and now I just have one more appointment with my surgeon on May 4th to sign my consent form and to go over any final details.

I'm most dreading the anaesthetic as I've been ill for days after previous GAs.. A friend of mine who I know through an amputee FB group has just had his surgery done with nerve blocks alone, he was awake throughout and said it was surreal but much better to recover from than his previous surgeries where he was asleep so I'm hoping they may do that for me..

So 6 weeks to go..

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Hi, Julie F...Well, it sounds like you're well on your way, and I'm hoping that you'll have a very successful experience.  I do think it's good that you've had time to meet and consult with various members of your team...despite that fact that my own amputation was elective, it all came about over only about one week at the end.  I was briefly introduced to my surgeon and soon-to-be-prosthetist a few days before the surgery date, when I hadn't even had the time to develop much in the way of practical, serious questions.  You're definitely in better shape, there!

On the anesthesia front, there definitely are alternatives to general anesthesia.  In my own case, I had an epidural that went in a day before and came out a day after surgery, with surgery day itself consisting of a combination of the nerve blocks and twilight sleep.  I was "out" enough that I didn't experience anything "surreal," but I also had none of my usual aftereffects and illness that follow general anesthesia.  The amputation surgery was not the first time I'd used that type of combination (I also have a history of illness following GAs) and every single surgery I've had since my first time using that sort of combination has been some sort of variety of local anesthesia and light-to-moderate sedation.  And I've been through a lot of surgeries!

So do have some serious discussions with your anesthesiologist...there ought to be a way to get you through the surgery without making you ill in the process.

Good luck and best wishes!

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Hi Julie,

I have had ten or so surgeries, none of which used General Anaesthetic, just spinal nerve blocks. Like you, I don't care for GA as the after-effects can be grim. I had no problems in surgery at all and no phantom pain either. I read somewhere last year that phantoms are less likely with nerve blocks but couldn't say if that's true or not, I've only my own experience to call on - good luck! (p.s. I'm also in the UK so understand the workings of the NHS...).

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Hi my name is shel and I am waiting to see my rehab people as I am going for a below the knee amputation. I have had unbearable pain in my left leg and foot for over 3 years now following 3 blood clots in my main artery in my leg. Which nobody knows why this happened,the team at the time had great difficulty in saving my leg, for which I'm very gratefull, but after 3 years of pain and trying every different pain relief possible, I'm on a opioid patch which is slow release over a week, gaberpentin, fluorouxitine (sorry wrong spelling), and other pills to help with the terrible contsipation. I am 48 years old and was such an active person with 4 children, I played netball twice a week sometimes. My life now is very different, so after a lot of thinking and talking to others I have finally come to this decision any information would be helpful.

shel

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