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Got the urinalysis test results, and am slightly puzzled... The first quick part of the test came back w/ all sorts of things out of 'normal range' like turbidity, white blood cell count, and other things that have typically come back abnormal when I definitely had a symptomatic infection... But then a day or so later I got a "No Growth" result on the actual culture test where they usually say what sort of bug is getting me this time... At any rate I got a message from the Urologist today saying it was a negative test....

This is a different team than the ones that will be doing my surgery, which makes me very glad as I'm very unhappy about the care they've given me...

WheelyCurious

Got the results on my bone scan from last week - reasonably good news, I still score as having osteopenia, which I've had for years, but they say I'm 'stable' so it's not getting any worse... Given that there isn't any really good way to increase bone density w/o the load bearing exercise I can't do, I'm happy...

Today I had my 6 month check w/ my PCP and TG docs, w/ a bunch of labs, including hormone levels...

T is still undetectable (not sure what it would take to get my adrenals kicked into gear again?) E was 129pg/ml, which is pretty much exactly what the TG doc wants, so I will keep going with the 0.15 mg/day estradiol patch routine. (other blood work was normal) I'm happy...

Urodynamics and cystoscopy on Friday... Then I get a doctor break until my surgery prep calls at the end of the month...

The countdown continues...

WheelyCurious

Glad to hear about your progress!

Well, I was supposed to have gotten a call from the Urology Dept. an hour ago in relation to the upcoming operation, and it hasn't happened yet... (I have a second call from the surgery people in about 15 minutes)

However, when I went onto the hospital patient portal, an hour BEFORE the appointment time, I saw a 'visit summary report' and a bunch of scheduled tests put in by the nurse I'm supposed to be talking to...

I've called the Urology Dept. twice, and they tell me she WILL call, but when???

FRUSTRATING - I hope this doesn't screw up my dates...

WheelyCurious

The surgery dept didn't call me either! The appointment was supposed to be at 5:00PM - I called at 5:30, and they were CLOSED - and the voice mail said they closed at 5:00PM...

Now the patient gateway says it has been rescheduled to the 14th, still at 5:00PM...

The surgery date in the gateway is still the same, but my GF was told that they are supposed to require the phone calls 30 days pre-procedure?

MORE FRUSTRATION!

WheelyCurious

Was able to reach the urology nurse, and looks like I can skip most of the tests she had ordered as I'd had the same ones not long ago as part of my annual physical... Only one that I think I probably should do is another urine culture since being a para means I'm normally colonized...

Still haven't been able to reach the Pre-Procedure people.... left a message, but they haven't returned the call...

WheelyCurious

Your appointment is at 5...

"When do you close?"

5!

I kept getting voice mail when I called the Pre-Procedure people, and not getting the promised call-back, so this morning I called the hospital "Patient Advocacy" dept. and complained to them... Sure enough, I got a call back earlier this afternoon to reschedule the date... I now have a date for the call at 3:45 on Tuesday next week...

Amazing how escalating a problem can get it fixed...

I also commented on the call schedule and announced closing time, and the guy on the phone agreed it sounded odd, but that in practice the nurses that actually make the calls work until around 7PM, it is only the line to the call scheduling folks that shuts down at 5PM...

So slightly more progress....

The other minor amusement for today is that I am one of the "Tool Testers" at the maker-space, which means I do basic competency tests for people that want to be approved to use the manual mills and lathes (which we require for safety reasons)

I always emphasize that when not actually in use, one should either remove or reverse the handle that adjusts the knee height.... My line for this is "Save your Balls" which always gets a grin and instant understanding (find a picture of a Bridgeport if you don't know what I'm talking about!) Usually if the user has had much practice on a Bridgeport or similar knee mill, they know this from personal experience - those handles are LETHAL, and are out to get anyone walking near the mill... Not sure what to tell female students, perhaps that the handle is a lousy sex toy?

WheelyCurious

Hey, there was a guy some time ago who had a similar issue with his penis. It was useless and thin, he got a penectomy and orchiectomy but kept the tip or glans of his penis. The surgeon fastened the glans a little lower down, sort of where his scrotum used to be, which made urination easy. Maybe something like that would work for you. You never know unless you ask.

Hash (imported) wrote: Fri Sep 01, 2023 3:10 am Hey, there was a guy some time ago who had a similar issue with his penis. It was useless and thin, he got a penectomy and orchiectomy but kept the tip or glans of his penis. The surgeon fastened the glans a little lower down, sort of where his scrotum used to be, which made urination easy. Maybe something like that would work for you. You never know unless you ask.

The issue with what you suggest, (thanks for the thought!) is that I CAN'T urinate voluntarily at all, except for undesired leakage... (This is typical of SCI patients, because of the lack of nerve communication w/ the brain) I have to do intermittent catheterizing where I have to shove a hose up my several times a day...

This is MUCH harder to do for females than males to the point where many actually go to indwelling catheters.

WheelyCurious wrote: Wed Aug 02, 2023 3:52 am I have a female friend w/ a similar level SCI, and she

jokes that the only time she has ever experience

WheelyCurious wrote: Wed Aug 02, 2023 3:52 am d "Penis Envy" was when she landed in rehab a

fter getting hurt... She described it as when the nurse comes in w/ a catheter kit and a mirror and says it is time for lessons on how to...

The illustrated instruction manuals you find from the catheter companies for guys basically seem to assume 'average' size and step one is basically to get a 'wanking grip'.... Because my injury is non-traumatic to the lower motor neurons, as opposed to the more common traumatic sort, I slowly lost the ability to get ANY erection, which has led to shrinkage to about pre-puberty size, and mostly almost 'buried'... I have trouble dragging it out far enough to clean the glans and stick the catheter in. A penectomy, especially with a re-route would make it MUCH more difficult to even get to the needed spot...

I'm hoping that in addition to making sitting a lot more comfortable, the surgery to get rid of the scrotum will improve access to what I have left... At least this what I'm asking the doc to do for me.

WheelyCurious

Had the call today from the "Pre-procedure department nurse... Not a big deal, mostly went over meds and such w/ instructions on what not to take when and what to bring / not bring, and so on... Pretty much routine stuff that I'd have expected from most any medical procedure...

It's getting closer....

WheelyCurious

I've followed your journey with interest since you joined the forum last year. I'm happy you're finally set to get what you've wanted.

spookibus (imported) wrote: Mon Sep 18, 2023 1:38 am I've followed your journey with interest since you joined the forum last year. I'm happy you're finally set to get what you've wanted.

Thanks... It's sort of a weird headspace being in this final countdown mode, especially when I go to cath and haul things out knowing it will only happen a few more times... Sort of a mix of scary and happy anticipation, mixed in with knowing that I'm going to have to figure out some new techniques...

Right now the sack and balls do a combination task of holding my underwear out of the way, and as paperweights to hold the underpad I use to keep my clothing clean and give a more sanitary work space, as well as some of the other supplies - about all they are good for... Once they are gone I'll have to figure out some new methods... It will be worth it though....

WheelyCurious

Getting closer and closer - Today I had to start using the special soap for showering that they want me to use for three days before the procedure... (My GF had to use the same stuff getting ready for her carpal tunnel surgery FWIW)

Definitely a strange headspace to be in knowing that every time I have to handle my balls that it is only a few more times that I'll be able to do so.... I want them gone, but at the same time I'm sort of going to miss them...

WheelyCountingDown.....

All the best to your upcoming procedures.

sftineun (imported) wrote: Wed Sep 27, 2023 4:20 am All the best to your upcoming procedures.

Thanks... It's getting down to the finish line - I just had my last meal w/ balls, as I am now only allowed 'clear liquids' from now to time... Way early for me but about to go to bed as I have to get up at 3am for my final shower and getting ready for pickup at 6, w/ showing up for surgery at 7:45...

WheelyCountingDown

Wish you well!

Had my shower and scrubbed my balls for the last time

So Now I'm waiting for the big van....

https://www.youtube.com/watch?v=_xRCbdFrSSc

Happy, but scared...

WheelyCountingTheMinutes...

In my thoughts I'm with you and wish you the very best. Good luck to you.

Good luck. Hope everything goes smoothly.��

Well I'm back from the hospital, or at least most of me is... laugh:

I'm told the surgery went well (I slept through it) I'm now very uncomfortable, but could be worse...

WheelyFixed....

Good to know. Please take care of yourself!

Congratulations!

Hope you heal quickly and easily

So far pain hasn't been to bad, just doing Tylenol for it.

Given my leakage issues, I suggested and they agreed, that they place a Foley for the procedure, and leave it for a few days while I go through the initial healing. So I have an indwelling catheter for the next three days. Probably better for the incision, and saves me having to be poking and messing with the area that probably has a lot of bruising and swelling with the intermittent caths.... Given that, I have not had reason to look, will probably be doing so in the morning while changing the dressing.

I am finding sitting to be a bit less painful than laying down, neither is comfortable.

Some ways the sore throat from being intubated is more annoying.