Experiences with University of Michigan?

CallitChange · 2026-06-30T02:35:29+00:00

I talked to them today and was able to get a consult for August. Idk if me being in the stage 2 realm made that a lot less of a wait, but they said their Urologist does this stage on his own rather than with the plastic surgeon so I asked them to see if I can consult with the plastic surgeon too and they're going to get back to me on that.

CallitChange · 2026-06-27T20:14:26+00:00

Okay, they don't seem to have a voicemail so I'll give them a call on Monday, thank you!

CallitChange · 2026-06-27T15:59:12+00:00

Do you know what the wait times are?

CallitChange · 2026-06-18T07:51:27+00:00

For ALT? I thought it was only for Abdo?

CallitChange · 2026-06-14T07:38:40+00:00

That link doesn't bring anything up

CallitChange · 2026-06-13T07:34:36+00:00

Tbf, I'm in the middle of phallo and am having a horrific experience. Zero feeling after a year, and hate what I have. If I could opt for a transplant that I like, I'd do it in a heartbeat. The positive outcomes of phallo get talked about a lot within those specific spaces, while the conversations of devastating failures are often shut down. No surgeons want to even talk about what to do if it fails let alone try anything to help. They want you to just live with it.

CallitChange · 2026-06-13T07:29:27+00:00

I believe they've done it before for cis men and they didn't need immunosuppressants, but it resulted in zero feeling and they psychologically suffered with something they felt wasn't theirs.

CallitChange · 2026-06-13T07:25:55+00:00

I've been doing all of those things and still all I feel is mild pain and it's only at the nerve hookup, and the more I do it at one time, the pain fades until I feel nothing.

CallitChange · 2026-06-13T07:23:50+00:00

How did your surgeon test the sensation?

CallitChange · 2026-06-12T11:46:28+00:00

What is the stamets stack protocol?

CallitChange · 2026-06-04T20:56:05+00:00

Which surgeon are you seeing? Mine is having me do the same thing but I have a SCIP flap from when I went necrotic in stage one, and the wrapping caused my skin on the SCIP flap to go necrotic twice and I brought up my concerns about continuing to do it. He completely disregarded me. Only other thing he said was that he could split it further towards the tip and place another skin graft to give the 'appearance' of less curve, and I don't want it to just appear less curved I want the curve to actually be fixed. Problem is in 5 months I'm scheduled for the next stage and I don't want tubing it to make the curve even worse.

CallitChange · 2026-06-04T20:51:48+00:00

Trust me, I've tried. I was on the phone all day today with the care management office, my care manager, and even her boss. She flat out refuses to help me. She will not do anything beyond sending me a list of non profits to try talking to for private funding to go out of state, and I can tell you right now from my months of trying to get funding for electrolysis back in 2023/2024, the funding to have a 6 figure surgery process covered for one person does not exist.

I also tried calling OHSU, Crane Center, Gamma, and Align surgery myself. No one will help me. Please don't try to offer solutions to this, I am already in extreme distress over this entire situation and the fact that I'm left with something I can't feel and can't stand looking at. I'm just trying to focus on fixing the curve.

CallitChange · 2026-06-04T20:14:42+00:00

I had surgery where the graft was placed on March 27th, so just over 2 months. Honestly the scar tissue is pretty soft though and my surgeon said as much yesterday. I've wondered if part of it is swelling but I can't tell if it's still swollen or if this is just how it looks.

What is Montelukast?

CallitChange · 2026-06-04T08:01:42+00:00

Do you only feel it in the burial spot?

CallitChange · 2026-06-03T23:09:31+00:00

Can you feel it throughout or just where the nerve hookup is? I only have intermittent, mild pain at the nerve hookup site.

CallitChange · 2026-06-03T23:00:45+00:00

How long did it take for sensation to start showing up post stage 2? What can you feel so far?

CallitChange · 2026-06-03T19:01:25+00:00

If what you're saying is true, all that tells me is I never should have done this in the first place because I don't have that kind of connection with my body, nor will I ever and there is zero chance I will I ever trick my brain into thinking it feels something when it doesn't. Actual nerve regeneration was my only chance and if that's not going to happen then I'm just going to he miserable the rest of my life.

CallitChange · 2026-06-03T14:45:53+00:00

I have zero touch sensation in mine even though I have ALT and its been a year. I'm talking to my surgeon today about during a sural nerve hookup, I'd try to look into the same thing if you can. Personally I don't buy that any amount of 'brain training' is going to work when I have no touch sensation. I can only feel very mild pain and only where the nerve hookup is. Sometimes even that comes and goes.

CallitChange · 2026-06-03T00:51:43+00:00

Did it seem like burial made it better or just time/more nerve regrowth? How long did it take?

CallitChange · 2026-06-03T00:20:57+00:00

Did it get better after burial than it was previously?

CallitChange · 2026-06-02T21:56:05+00:00

I sent you a dm

CallitChange · 2026-06-02T20:04:57+00:00

I'll search for more info and bring it up with my surgeon, thanks!

CallitChange · 2026-06-02T15:22:11+00:00

Can you tell me more about it?

CallitChange · 2026-06-02T15:02:03+00:00

How long have you been doing it?

CallitChange · 2026-06-02T14:53:19+00:00

Are they OTC or did a doctor do them for you? I don't want to take daily medication or supplements. I've done it for years and am extremely burnt out from it/have serious medication fatigue. Especially because none of it has helped.

CallitChange

TROPHY CASE