After two years and three surgeries, I'm opting for amputation

Thanks for your reply mammalu.  Your experience along w many others that I've talked to played a key role in my decision to skip the fusion option.  Also I have a lot of pain above my ankle where my tibia and  fibula blew out the side of my leg.  

I hope this fusion works for you.  I feel badly for you and what you're going thru.  Chronic pain disrupts every aspect of our lives.  I'm ready to be done with it and get on with my life.  I wish you the best.  Please keep me informed with your progress.   

Phil I'm so happy to hear that things went well & you're rid of the debilitating pain that you had before. I have considered this very seriously but I first wanted to try ankle fusion which I'm 11 weeks in & having a rough time with it all. This is my last option so if it doesn't work, it will be amputated without hesitation. The only concern I have is both my feet are in rough shape so it would be a double amputation which scares me. 

Good luck in your healing journey & please keep us posted on your progress. I really pray that this all works out for you & that you will be out there doing the things you love before you know it. 

I'm glad things are on the up for you Phil but anyone else considering amputation, please look into the EXOSYM device. It's a prosthetic device without amputating. It has given people back their mobility that were in really severe cases like ourselves. I'm going on May 7th to be fitted for mine. I can barely walk 5 steps i'm in so much pain. I have contacted people who  have these devices after many failed surgeries, club foot, partial amputations, the list goes on & on. They're now out running marathons. I know it's expensive, even more so for me as I'm canadian but if it works, it will be worth every penny to regain my mobility. I haven't walked since 2014..

I’m doing very well with my prosthesis.  I do everything that I did prior to my accident.  I have zero regrets for having the amputation.  I’m extremely active, and most importantly , I’m pain free.  I did experience phantom pain for two months, but that’s it.  I don’t have any pain now, and that is a great feeling.  Chronic pain robbed so much of my life for two years. 

Hi Ray,

You're not using your foot & ankle anymore to walk. It's protected in this device. You are learning to use new muscle groups such as your abs, hips, & thigh muscles. You really should read up on it as it has been a life changer for thousands of people. It was originally designed for Veterans & they had such a success in giving them back their mobility & them reentering the service, that they opened it up to civilians. I'm feeling really hopeful that I will be out walking this summer for the first time since 2014. 

thanks for your advice appreciated but i have cronic pain when i walk and think the exosym would not suit me but please keep me updated and all the best for 7th may

thanks for everything really appreciated and it gives me some relief to hear your circumstances and how well you are coping

what problems do i need to be aware off

what exercise/sports do you participate in and what sort of level can you now attain compared to previous  

do you need special prosthesis  

regards 

ray

Let me start by saying that first and foremost, you must be mentally prepared for the amputation if you choose that option.  As my surgeon told me, you can’t undo it.  Don’t be afraid to let your dr prescribe an antidepressant such as lexapro,Zoloft, and or cymbalta. These will help you with the emotional and mental challenge that you may face.  After two years of pain, inability to get around, and overall hell, I was anxious for the surgery.  Go see a prosthetist prior to amputation and they’ll give you a feel for the process.    

I exercise using an elliptical as well as other stretches etc.   I walk a lot on my farm up and down hills.   You won’t have any limitations unless you do so mentally.   People climb mountains, play sports, etc. with prosthesis.  

My prosthesis is not a special one so to speak.  There’s a pump built in the foot that pulls a vacuum in the socket to assist in keeping it on.  I don’t think anybody could come close to pulling off.  This gave me my life back, period.  I have found one thing that I cannot do, drive a vehicle w a clutch.  I’m sure there’s ways to overcome this.  

Hold your head up, amputation is not the end of your life, it was the restart of new life for me!!!

thanks for everything

I will have to do it private so could you give me some idea of prices

​and my specialist only wants for me to have fusion all agree replacement would not work my ankle is deformed 

currently I am seeking a second option but it is not easy

​and I await barbs may 7 with interest 

thanks again

ray

any advice

​I am considering coming to the united states

​I will also await with interest 

cheers

ray

​I will consider having it done in America  

Hi Ray,

Thought I'd give you an update on my Exosyms. I've been in them now for 16 days. I'm totally scooter free & walk to where ever I need to go. Because my hamstrings, abs & glutes are so weak from the years of being able to do nothing but sit & living on a knee & mobility scooter, I need to do a lot of conditioning in these areas as those are the muscles you use to activate your device. When I'm in the devices, I have no pain. The challenge for me right now is learning how to walk in them properly & that will come over time as I get stronger. I had a hard time understanding the concept of walking in them without using your feet. There happened to be a guy there that was a double amputee & was learning how to use his prosthetic legs. My trainer said, he was to learn to use those devices with no feet, using his core, glutes & hamstrings. It's no different with you. You basically have feet that don't function & you're receiving the exact training as him, no different. It's coming, I'm improving in that more every day.

The clinic told me that these devices are for 3-6 months down the road as it will take that long to get strong & utilize every inch of them.

I can't tell you how freeing & exhilarating it is to go to the gym, the grocery store or wherever I need to go on my own two feet. 

I met people there from all over the world. One women has lived on a knee scooter for 10 years. She has a large hole in her ankle from diseased bones which at one time was filled with cement & all the crazy things they did to that poor woman is horrendous. She only needs one device & walks totally without pain. 

It would depend on your condition whether or not these devices would work for you. You would need to speak with Ryan Blanck & send him your history & a video of you walking. He would be really honest with you if he thinks this device would help or not. 

I know it's been a god send for me. I'm not able to walk outside comfortably yet but that will come as I get stronger. A very good investment for me.

Good luck Ray in your healing journey. 

thanks for the update great to hear the good news

has Ryan got a email address I could send the info to

what is the approximate costings 

and keep up the good work 

will k

Hi Ray,

the cost is astronomical but you can’t put a price on your mobility & freedom. They’re $9000 each US dollars. I’m bilaterally so I needed one for each foot but a lot of folks only need one.

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

thanks for everything sounds really interesting

have emailed hanger await there reply

would be pleased if you could keep me updated on your thoughts and progress

best regards

ray

I'm so glad to hear that Ray. I'm improving in my walking every day. Once I can get those muscles strengthened, it will just be a normal thing for me to get up & walk. I still feel like it was a great investment. I haven't needed any mobility aids since I've had this & I'm also noticing an improvement in my walking without the devices. The only time I take them off is when I'm at home ready to sit down & watch TV. I throw on a pair of sandals & normally I would be in pain & dragging my bad foot behind me but I'm not doing that as much now. I believe in a few months, I will be out walking miles. There will be no limits to what I will be able to do.

Keep me posted on what Ryan says & I will definitely keep you posted on my progress. Talk to you soon Ray.