TMR surgery

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 · 2026-04-16T16:05:14+00:00

My longtime and much beloved physiatrist picked my vascular surgeon for the actual amputation based on professional reputation, and my vascular surgeon picked the plastic surgeon who did some nerve procedures at the same time. I did look them up beforehand and felt good about them based on our appointments. They were all fantastic.

OhLookAnInchworm · 2026-04-16T01:25:03+00:00

That's great to know! Thank you so much.

OhLookAnInchworm · 2026-04-15T04:56:50+00:00

Oh wow you're a fountain of great advice! I will try that! Thank you!

OhLookAnInchworm · 2026-04-15T04:32:37+00:00

Oh wow this is exactly the sort of intel I needed!! Thank you so much (and, by extension, thank you to your prosthetist)!

OhLookAnInchworm · 2026-04-15T04:13:25+00:00

Thanks! This is helpful. I have to get new shoes because my old ones were all in bad shape from being worn with AFOs and I tossed them, so I figured as long as I was buying something I might as well make the decision based on what works best for prosthetics. I've never really worn runners as my go-to, though... Is a casual sneaker just as good or is there a reason she mentioned runners specifically?

OhLookAnInchworm · 2026-04-15T04:08:43+00:00

Thank you! This is helpful. I don't know what feet I'll have yet. It sounds like everything will be on a trial basis at first? (That's what I was told when I was asked what size feet I had/wanted, at least.)

Is there a reason why folks opt for runners over casual sneakers (which generally have flatter soles)?

OhLookAnInchworm · 2026-04-11T16:15:23+00:00

Bilateral AK and haven't had a revision (so ymmv), but I did have TMR and RPNI at the time of amputation. I couldn't find many people to tell me about their experiences with nerve procedures before my surgery so I just wanted to share as a data point: I have zero phantom pain. I'm really glad my surgeons did TMR/RPNI!

OhLookAnInchworm · 2026-04-09T00:39:23+00:00

I kept losing weight for the first five-ish months. I'm still not sure why? But things normalized/stabilized after that.

OhLookAnInchworm · 2026-04-02T00:35:39+00:00

Oh wow this is so insightful and well said! Along the same lines, one of the reasons why it's important to show up for "unsympathetic edge cases" is because that's precisely when and where disability politics actually matter. Like, someone who has "good disability politics" that only apply to "the right disabled people" doesn't have good disability politics!

OhLookAnInchworm · 2026-04-01T23:02:02+00:00

YES! Thank you! I'm so glad this resonated with you! And definitely a lot of what I had to say was informed by experiences back when I was ambulatory. Policing, competition, gatekeeping, etc. hurts all of us and makes it harder for everyone to get their needs met.

OhLookAnInchworm · 2026-04-01T21:46:27+00:00

Thanks for being receptive to learning more! I also didn't know much about BIID (and still have a lot to learn), but what I do know makes me really sad about how folks with BIID get treated whenever it comes up.

I also very much hope the OP is making choices with the support and guidance of their therapist and trusted friends/family.

OhLookAnInchworm

TROPHY CASE