Elective Amputations- How did you know it was time?
I’ve been lurking in this group off and on for about a year now. I am not currently an amputee, but am weighing the trade offs of going with an elective LBKA, and if so, am trying to figure out what would be considered “the right time” to get one.
Those who opted for an amputation after chronic mobility issues and pain, when did you take that step?
Context of my story:
I am just shy of 10 year in on my journey with a locally aggressive bone tumor (Giant Cell Tumor of Bone) in my left talus. It’s an intermediate bone tumor that eats the bone from the inside, and considered benign in most cases (no malignant transformation at this time in my case). I am Canadian, and the medical system took so long for me to see an orthopaedic surgeon that the tumor had breeched out of my talus and into my subtalar joint. My first tumor was about 5 cm in diameter. I now been through 3 surgeries- all curettage with bone grafting, from either recurrent tumors or bone cysts. My last surgery was January of this year. My current surgeon and I aren’t confident that my ankle will hold up long term, and believe that my joints or bone will probably force a “radical solution) at some point. The paths we can can see are: talus replacement with cadaver bone with a full ankle fusion, a custom prosthetic talus (helps the bone part, but not joints or scar tissue), and a BKA.
My next appointment with him is in September, to review the results of my upcoming MRI. I am going to ask for a referral to the Amputation Clinic at the hospital, which offer consults for folks who are debating about opting for one.
I am leaning towards a BKA, for the sake of a new chapter after 10 years of planning my life (wedding, kids, moving) around my ankle and always wondering when the next decline will be. I currently have okay mobility- I can take my toddlers for the zoo for a few hours, can run a modest amount, but don’t have full range of motion by any means. I currently have some pain every day, but can usually ignore it because I’ve had worse ankle phases. I also dream of more for myself than a bum ankle and constant worries and MRIs, and am aware of some limitations that come with a BKA.
I am weighing choosing to go the BKA route sooner rather than later, and focusing on recovery, and moving on with a new normal, but am worried about jumping the gun. I know that being “ready” will never truly come, but is there a sweet spot with this decision? I don’t want to keep having my life dictated by always worrying about my ankle getting worse again, since there has been little stability in that, and lots of anxiety with life choices because of it.
Those of you that opted for an elective amputation- what was the point that you got to that made you take that leap of faith? Any advice is welcome.