Another step forward I hope...

[WheelyCurious]

At my last appointment with my TG doc, she referred me for a Urology appointment.

That finally happened yesterday, with a nice doc who spent quite a while with me. He didn't seem to think there was a lot that could be done about my leakage issues other than cathing more often (I agree that I should but it's difficult to actually do it). I asked about a urethral sling as that had sounded promising when I read about possible options online, and he had several reasons he thought it would not be a good idea.

Then we got to discussing my surgery, and what I wanted to accomplish with it, and he had no issues with it, and discussed what the likely options would be in fairly specific terms. However he said it was not the area he particularly specialized in, so he was referring me to another doctor in the Urology dept. that he said was their TG specialist in doing the surgeries, and who worked closely with their plastic surgery people...

So now I'm waiting to hear from them about getting to see the next doc.... However I feel like I'm at least a tiny step closer to getting

In the mean time I have another appointment with the TG doc next month. That will be nine months since I started chemical castration w/ Lupron, and six months on E, so I'm getting close to the SOC 8 recommended minimum 'test-drive' time

Hopefully won't be to much longer...

WheelyCurious

[WheelyCurious]

Had another visit with the TG doc this afternoon... It looks like another small step closer to surgery...

She says the Urology doc that handles gender-affirming surgeries has seen the notes from the doctor visit I mentioned above, but he is extremely busy (in her opinion over-booked) which is why I haven't heard from him. She said there is a second hospital in the same network that also has a TG program, and I *MIGHT* be able to get surgery there sooner, so she has put in a referral there as well, so we will see which one can get to me first....

She said that SOC 8 notwithstanding, the insurance companies still need two psych letters, and she has put in referrals for me to see shrinks that work with her program.

The insurance may also still require a year on HRT, but it's a bit unclear what they will count as the starting date... However given the likely time it will take to arrange scheduling, I'm unlikely to get anything before July, which would make that a moot point.

I also started raising the question about recovery time - I know what folks here have said, but that involves stuff like walking, which isn't a concern for me - I need to worry about being able to do transfers and load bearing on my arms. In addition what I am wanting for surgery is not really something I've seen discussed... I want the orchie, w/ scrotectomy, but also to have them do something to 'UNbury the penis and make it more accessible for cathing... Presumably this is more complex and might take more recovery time than just a nut & sack job, but not as much as a nullification... Any thoughts???

They also tested my levels - T is still <12ng/dL, but the E has gone WAY high, not sure why it says I was at 393pg/ml, or almost 3X the 125 I was at in November... I'm asking about reducing the patch, but haven't heard back yet.

WheelyCurious

[WheelyCurious]

More small steps forward... I just got the 2nd appointment w/ a shrink through the TG center so I will hopefully be getting my two letters by the end of the month....

I haven't heard from either of the two possible surgery places / doctors, but that may be waiting on my getting the letters, or just that they are overly busy... I haven't been pushing on that since I don't have the letters yet, but probably will once I've gotten them.

WheelyCurious

[WheelyCurious]

Wish me luck.... Having the first shrink appointment to hopefully get my letters tomorrow!

I'm not expecting any problems but it still makes me feel a bit nervous....

WheelyCurious

[Valery_V (imported)]

Good luck!

[WheelyCurious]

Good luck!

Thanks...

I just got off the Zoom consult w/ the doc, and it looks good, she said she will be writing the letter later on this afternoon. No problems and no difficult questions... Basically filled in my background of how I got to the point of wanting surgery, any concerns I have about it, and stuff like that. She mentioned risks and that sort of thing.

Overall not a big deal...

So I'm now another step closer....

WheelyCurious

[Littledick (imported)]

Well done.

I hope it all goes well for you

[WheelyCurious]

Thanks, I have now gotten the letter and it is VERY thorough and complete, with approval, saying in essence that I've checked all the boxes that she went through in the appointment, so no reason NOT to get the surgery....

I've got one more appointment later this month on the 30th with a different shrink in order to get the second letter, but I don't expect it will be much different as both docs are referrals from the TG center, so used to this sort of thing, and will probably be easier given the first letter.

WheelyCurious

[JesusA]

Congratulations on your progress. I hope that it will become easier for those who follow you. You are clearing the path for others.

[WheelyCurious]

Thank you Jesus....

I did mention your name as related to SOC8 in passing along w/ EA and that I chatted w/ you online here on various occasions... I don't think that made a huge difference beyond helping demonstrate that I'd "Done my homework" on being aware of what all this meant... (I didn't mention your handle beyond saying it wasn't hard to figure out...)

I'm glad to be blazing the trail, and at the same time showing that it is relatively low pain beyond being time consuming...

WheelyCurious

[WheelyCurious]

Good news!!!

I just had my second shrink appointment, and it was even more of a 'non-event' than the first one - I think it only lasted about 10 minutes... Basically he said that he had reviewed my chart and the first shrink's notes, and didn't see any real need to go over the same ground again. He asked a couple of questions, and that was it. I had the letter in my email within 10 minutes after the appointment...

So now it's time to start hunting for surgeons!

WheelyCurious

[Littledick (imported)]

Great news

I hope your search goes easily and you find a fantastic surgeons

Al the best

[WheelyCurious]

Good news! Just got a call from the office of one of the two surgeons I am most likely to use to schedule a consult - I see him on May 8th... So more progress!

WheelyCurious

[Poor_pup_no_balls (imported)]

Fantastic news! You're getting closer.

[WheelyCurious]

Well my consult with the surgeon is tomorrow afternoon... I should have done it sooner, but per a lot of advice on getting the most out of a medical appointment, I've made a list of questions to bring with me...

This is what I've come up with so far, any suggestions about things I should add?

Questions:

1. Surgery needs:

A. Orchiectomy

B. Scrotectomy

C. Leak reduction (VERY IMPORTANT!)

D. Ease cath access / unbury penis?

2. Pain management?

Opioids NOT acceptable

3. Recovery time?

A. Out of Hospital

B. Light activity, especially TRANSFERS

C. Driving / semi-normal

D. Full

4. Activity restrictions / care needs after?

A. GF NOT capable of significant assistance

B. Possible need for Skilled Nursing Facility stay?

5. Other testing needs?

A. Urodynamics

B. Cystoscopy

C. Ultrasound (my PCP thinks not needed due to CT of abdomen 10/22 w/ no abnormalities)

WheelyCurious

[Losethem (imported)]

Having been a charge nurse in a skilled nursing facility, I wouldn't wish a stay in one of those places on my worst enemy.

[WheelyCurious]

Having been a charge nurse in a skilled nursing facility, I wouldn't wish a stay in one of those places on my worst enemy.

I've been there in the past, (car accident, where my only injury was a fracture in my left 5th metacarpal, had to spend 30 days in one because I couldn't load bear on that hand) and I totally agree that being in an SNF seriously sucks... However given the modern 'drive through medicine' attitude of many hospitals, and the fact that my GF is totally unable to do any sort of assistance that needs vision (she's legally blind) or physical effort like lifting me because of her other physical limitations, I might not have a lot of choice...

The big question as I see it is how long it takes from surgery to being able to do transfers without needing physical assistance - that is probably the heaviest task I MUST be able to do in order to recover at home, if only to be able to get to and from the bathroom...

What might be an interesting question is how my disability changes the usual expectations on recovery - I'm not going to be putting a lot of load on my leg / trunk muscles, but my arms are my legs, and how does that change things?

We have a pretty decent data set on recovery patterns for AB surgery, but I haven't seen much on recovery for paraplegics....

WheelyCurious

[Arab Nights (imported)]

Good luck man. That whole situation is touch.

[WheelyCurious]

Well I had my consult! Everything looks like a go, though not clear how soon... The doc said he would have one of his staff call me to set up a date. He is also putting in orders for the tests I mentioned needing. He also said that he wants to get the plastic surgeon involved to see about improving my access to the penis.

So going down my list from earlier....

1. Surgery needs:

He is OK with the Orchie, is worried about the scrotectomy because he thinks I'd be at increased risk of infection / other complications because of being in a chair. However he will do it if I insist (I do) He isn't sure about the leak reduction, wants to see results from the Urodynamics and Cystoscopy. He says that plastic surgery will need to look at what I need for improving access, but he sees it mostly as reducing the pubic fat pad... (He also wants me to lose weight)

2. Pain management?

Opioids NOT acceptable,

but he says that he has done 'hundreds' and that the patients don't need opioids and do fine w/ over the counter Motrin / Tylenol.

3. Recovery time?

He said it's 'day surgery' so no hospital stay, and that I should be able to do transfers that day. About a week to get back to driving, and 6 weeks to be back to 'normal'

4. Activity restrictions / care needs after?

Other than taking it easy, no special care needs. He said there wouldn't be any wound care, so presumably everything will be done w/ surgical glue, etc... He said no need to worry about nursing home, but said he'd advise me to do as much preparation in advance like having meals precooked and so on to minimize the amount of work I'd need to do in the first few days.

5. Other testing needs?

As mentioned he is supposed to be ordering Urodynamics and Cystoscopy, that will possibly affect what he wants to do about leakage...

So reasonable progress, sounds about as good as I can hope for at this point.

WheelyCurious

[WheelyCurious]

No surgery date yet, but I did get a call to schedule the urodynamics and cystoscopy on June 22... Progress is glacial, but happening...

WheelyCurious

[NaturalEunuch]

Progress can feel agonizingly slow, then one day your surgery date is barreling at you like a speeding bullet train. Funny how one's perception of time seems like it moves at different speeds.

[WheelyCurious]

Possible delay... I tend to sign up for a lot of research studies, many have cash or other direct benefits, not to mention the general 'karma points' (for whatever those are worth) of hopefully helping to contribute to medical knowledge and possibly better treatments for my SCI...

I just learned about one that involves electrical bladder stimulation, and pays up to $1,350 I just passed the phone screening questions, and have a 'baseline visit' to verify that I'm eligible, and do the initial visit stuff if I pass that... Downside is it's a 12 week study, and the study evaluator said I'd have to delay surgery until it was finished... However given the speed at which things seem to be moving, I'm guessing that it won't be a huge delay in practice...

WheelyCurious

[Paolo]

They'll pay you that much to shock your bladder?! I don't know if I trust that!

[Valery_V (imported)]

Bladder cleansings are administered in order to maintain the permeability of a probe and/or to eliminate an obstruction, be it a clot, urinary sand or detritus, by means of an infusion of intravenous fluid using sterile procedures through a bladder catheter. This is a technique frequently used with patients undergoing genital-urinary surgery; it is not recommended for routine usage due to its high risk of associated infection. Bladder cleansing can be continuous by means of a permanent bladder cleansing method or intermittent by means of an open or closed system.

* * *

https://pubmed.ncbi.nlm.nih.gov/18497003/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2626932/

[WheelyCurious]

They'll pay you that much to shock your bladder?! I don't know if I trust that!

It is a legitimate study that has gone through all the human medical experiment approval hoops. I have actually done stuff in this lab with this particular doctor before, though that didn't work out. So definitely legitimate and above board.

According to the study coordinator, they basically have you come into the lab twice a week. Each time they hook you up to a stim device for about an hour. He said that during that time you can read or do other stationary activity, and that the stim is not particularly noticeable.

There is actually a lot of research on SCI and electrical stimulation, with some good results that are a bit puzzling in terms of the mechanism, as they seem to get results that last much longer than the stim. I'm hoping it will cut down on my leakage problem, as the surgeon was not sure if there was anything he could do about that part of my desire, but if the stim helps instead?

WheelyCurious