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paingirl 01-11-2012 04:35 PM

To those considering Amputation
I am new to the boards, and noticed a lot of people wanting an opinion from an amputee on amputation. First of all only get the ERTL procedure done. It has made all the differnece in my life.

I am an elective below knee amputee. I was 25 when I decided to have my right foot amputated in 2003. I was born with severe club feet with spina bifida. I had 17 surgeries to reconstuct both my feet since birth to age 11 on both my left and right feet together. I had the same ortho doc from birth to age 18 when he retired. At 19 in college my right foot started to get really bad so my new ortho did an anckle fusion. Then a year later I needed the screws removed from popping through, then a year 1/2 later an additional ankle fusion and then the screws removed about 6 months later. The whole time I was in a boot and on a lot of pain pills. My pain management doc suggested amputation. I went to my ortho and he said it was a good idea, although he did not want to give up, so he did a bone scan and my whole foot came back as bone on bone and the fusion's causing more good than bad, he did not know how I was even walking. I got second oppion and they agreed on ampuation. I trusted my ortho doc and did not research anything at the time and thought it was ok that he hasnt done an amputation since med school.I was desperate to have a life off pain meds at 25 and not be in pain.

He ended up cutting my foot off way to high and leaving the bones horrible and devasting the nerves. Long story but he vowed to never do an amputation after mine becasue he messed up so bad. After 1 year of horrible pain and not being able to wear a prosthetic, I went to a different ortho doc who did a revision and removed a neuroma. It helped for a few months and then I was horrible again. Then a coworker found about the ERTL. I traveled 3 hours to see a specailist and ended up having it done in 2006. It was a true blessing. Please look up ERTL reconstruction. It is how every amputation should be. It is the standard in the milatary.

I still have horrible problems from reoccurent neuroma's and becasue my limb is so short, my ERTL surgeon is still working with me and just did a 2nd revision. All long stories.

Also before the intitial ampuation I got a tunnled epidural catherter, which I had 2 days before the amputation and for 1 month after. It was to trick my brain from feeling the pain I felt for 25 years before the ampuation. This did elimate my phantom pain, I do not have phantom pain. It was a big concern that even if I had my foot ampuatated that I would still feel the pain, the epidural helped a lot. I had a great pain management doc that did this.

[B]So if you do decide to go the ampuation route instead of another fusion, do these two things, they will hopefully make a huge difference in your life.

Get an ERTL amputation and a tuneled epidural cathater pain machine a few days before and 1 month after your ampuation. [/B]

I will be happy to answer any other questions. I am having a lot of pain issues in my left foot and with another neuroma in my right BKA and the meds are making me tired and not able to type well, so it may take some time for me to get back to you. I sometimes regret my choice but I know I would not have regreted it if I did the ERTL from the beginning.

LilacGardenia 01-16-2012 09:20 PM

Re: To those considering Amputation
I'm sorry to hear this. Thank you for sharing your story and putting this out here to help others., it definitely means a lot.

I'm a biomed nerd and kind of obsessed with regenerative medicine. I've read about researchers working to reconstruct limbs by regrowing them. It's pretty cool stuff. They've already successfully restored fingers and are working on making arms and legs possible one day. Just thought I'd share that and was wondering if you looked into any clinical trials for new treatments and/or new prosthetics being developed?
I wish you the best!

<3 Lilac

LENFOST 01-31-2012 09:31 AM

Re: To those considering Amputation
Hi Paingirl,

I am not sure where to start as I am feeling overwhelmed by your post.

To start, I too was born with TEV and ten years ago was told amputation was the best option for improving my quality of life, if and only if I gave 200% in the rehabilitation process. I'm 27 now, and 10 years later I think I'm ready to finally do it.

When I read that you amputated because of CF I could not believe my eyes. I am so sorry for all that you have been through, I empathize completely! I have so many questions that I don't know where to start. My doctors are commending reconstruction surgery, but I think I would rather just amputate.

My main worry, concern, is the leap of faith involved. How did you finally decide to do it and did you doubt your decision before surgery? Do you regret it at all?

If you can offer any advice I would be more appreciative than you can imagine.

Thank you!!!!!!!!

solnseeker 09-29-2015 06:54 PM

Re: To those considering Amputation

Thank you for your posting. I am seeking help for my brother. He is an Indian citizen and a spina bifida adult. I read your experience with amputation, did you go with any prosthetic limbs since then? Please let me know your experience. I am very much interested in getting my brother to walk again. I was hoping that you could point me in the direction of getting him prosthetic legs.


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