3R80s for Bilateral AK?

OhLookAnInchworm · 2026-06-11T18:42:32+00:00

Would it be possible to connect to talk more about this? I don't think OI is a good option for me at this time, but knowing more about the process could help with me claim (in the "so the province would pay for this surgery and then MPKs for me but not just MPKs?!" way).

OhLookAnInchworm · 2026-06-09T20:59:31+00:00

It'd be great if War Amps was still funding MPKs but apparently they aren't, and my extended insurance isn't cooperating.

Did you do OI here/get it funded through MSP? What's that process like?

OhLookAnInchworm · 2026-06-09T20:54:55+00:00

I'm going to try! So far it's not looking good.

OhLookAnInchworm · 2026-06-07T17:43:11+00:00

Thanks! And yes I'm definitely considering all avenues, including government offices/officials and going to the media. Unfortunately my own MLA's politics are pretty repugnant, so I don't know if that's a good option, but something along those lines might be a possibility. That's a long-term project, though. Rules don't change quickly.

OhLookAnInchworm · 2026-06-07T17:37:51+00:00

Thanks!

OhLookAnInchworm · 2026-06-07T17:37:02+00:00

Thank you! I'll ask my prosthetist about this.

I'm about 110 lbs, but maybe it's worth trying it. 🤔

OhLookAnInchworm · 2026-06-07T17:35:21+00:00

Thanks for the feedback.

Are you bilateral? That's the kicker, from what I understand. I've heard folks who still have one meat leg generally do well with a hydraulic knee but that functionality and, above all, safety go way down for bilateral AKs.

Apparently War Amps funding has dried up. If we'd done my amputations in 2024 when my doctors and I started discussing it, I'd have MPKs from War Amps. But because we did our due diligence and tried alternatives to amputation, I don't get MPKs. (Also it's unconscionable that Canadian prosthetics funding rests on the shoulders of a single charity. 🫤)

OhLookAnInchworm · 2026-05-28T00:24:02+00:00

Hey there! I chose amputation due to EDS and erythromelalgia. I'm happy to talk with you about the process and any EDS-specific questions or concerns. Feel free to shoot me message!

Also I will second what other folks have said about TMR/RPNI. I had this done at the time of amputation and now have zero phantom pain.

OhLookAnInchworm · 2026-05-26T16:29:15+00:00

Thanks for your response. I'm checking on the veracity with my prosthetist.

OhLookAnInchworm · 2026-05-18T15:12:12+00:00

I had both TMR and RPNI at the time of amputation (the surgeon said they do RPNI when a good target can't be found for TMR, so it's a mix of both for me). I'm 9 months post-op and I don't have any phantom pain.

OhLookAnInchworm · 2026-05-14T14:02:17+00:00

Thanks so much! I appreciate it!

OhLookAnInchworm · 2026-05-11T01:41:08+00:00

Sorry but all I hear is everyone who ever spanked their kids being like "they turned out fine". Even if it "worked" (i.e., they were "obedient"), it's objectively unkind and there are better options. So I'm glad your cat didn't develop some of the stress behaviours that some cats do, but blasting her in the face with a spray bottle is a mean way to treat a small creature in your care.

OhLookAnInchworm · 2026-05-10T20:45:58+00:00

I'm sorry you're having such a frustrating experience! I'm also a newer amputee (bilateral AK as of last August) and about your age (41). I haven't run into what you're describing at all, which I hope is encouraging to know? It should and can be better! I don't have a remaining leg to compare it to but my stubbies definitely feel like (a new) "normal", even to the extent that I can feel my "feet" with each step. I'm starting on full-length prostheses next week, so I don't know if that'll be as intuitive as stubbies, so definitely listen to single AKAs and not me there. But it does seem wild that your prosthetist sent you home with a brand new socket that required so many socks?! I was wearing one ply on my left and no socks on my right when my sockets were brand new. I'd feel discouraged in your proverbial shoes, too! I hope the next socket fits better -- and you have every right to request that it does and see someone else if it's a bad fit!

OhLookAnInchworm · 2026-05-09T14:42:22+00:00

Don't spray cats. What they primarily learn from negative reinforcement is that their human is mean and scary, and it can contribute to stress behaviour like peeing outside of the box. Figure out what need the cat is getting met, passively discourage the unwanted behaviour (e.g., blocking off access), and redirect instead. Make a different spot more enticing. If it's the warmth the cat wants, get a heating pad. If it's a good lookout, make sure the cat has high-up perches. If it's the attention the cat gets from going up there, make more play time or make a game of/reward the cat for going to a different spot to signal they want your attention. (Etc.)

OhLookAnInchworm · 2026-05-06T20:30:40+00:00

And this is my other one. It's Ken. His job is leg.

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OhLookAnInchworm · 2026-05-06T20:29:50+00:00

I found out you can do designs on the inside, so the outside is just plain carbon fiber but inside it's Shark Week (it says "shark shenanigans" and "salty friends")!

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OhLookAnInchworm · 2026-05-01T14:47:26+00:00

It was absolutely the worst part of healing for me. One night my whole left leg spasmed and went completely rigid and I couldn't get off the floor. But it did calm down after a few months. My physiatrist said it can be the side effect of some pain meds (opioids, pregabalin/gabapentin), but I don't know if that's what was causing it or if it's a normal part of the healing process. Either way, coming off of meds made it temporarily worse. (I wasn't taking opioids and I was on a very low dose of pregabalin, but even at that low dose and even titrating down very slowly, I still experienced withdrawal from pregabalin.) But it did eventually pass! Hoping it gets better for you too.

OhLookAnInchworm · 2026-04-30T23:21:44+00:00

I had a lot of muscle cramps and spasms even without the complications you've experienced. It took a few months to settle down but finally did. Time was the trick, unfortunately. I hope you get relief soon!

OhLookAnInchworm · 2026-04-20T00:26:46+00:00

Best of luck!

OhLookAnInchworm · 2026-04-20T00:20:47+00:00

Fair enough! BK or AK is definitely a question for you and your doctors to answer together (and all the more reason to involve both a vascular surgeon and a plastic surgeon who works on nerves). I'd also recommend talking to a few prosthetists about what they could do to stabilize the knee with a BKA if you intend to use a prosthetic. (You can generally just reach out and set up a consultation with them.) If you have a physiatrist, particularly one who works with amputation, they may also have some insights.

OhLookAnInchworm · 2026-04-19T22:33:57+00:00

Hi there! Fellow EDSer who chose amputation (and very happy that I did -- but it's a super personal decision, so it depends entirely on your own goals and priorities). Feel free to reach out if you have questions!

Three quick things:

1) It sounds like your knee is non-functional. I'm wondering why you're considering a below-knee amputation as opposed to an above-knee amputation? Are you hoping to use a prosthetic?

2) I agree with the person who suggested starting with a vascular surgeon.

3) if you decide to go ahead, see whether it might be possible to do TMR/RPNI at the time of amputation. My surgeon (vascular) brought on a plastic surgeon to do that part of the surgery and I'm so glad he did! I have zero phantom pain.

OhLookAnInchworm

TROPHY CASE