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Why Wait?

Posted: Wed Feb 25, 2015 6:10 pm
by ZeuterMe (imported)
As mentioned in my other thread, (http://forums.eunuch.org/showthread.php ... post255155) there's a flowchart published on the Orchialgia group. I've exhausted all the treatments that are both conservative and long-term-viable. Psychotherapy is just teaching you how to enjoy living in pain, TENS electrodes won't stick, and I'm not keen to get on opiates (which actually lose their effectiveness, even as they shut down your personality).

I've requested an appointment for nerve blocks, and I'm holding out hope that it'll reboot the nerves involved. If, however, there's still tissue damage to cause the nerves to act, then a reboot will still end with unacceptable amounts of pain, even if it confirms that it's not simply a nerve ghost.

My doctor was talking about referring me to a UF program for robot-assisted epididiectomy. I'll have the whole things out before I do that; the robotic surgery will still leave me sterile, and I could have the option of managing my own biochemistry for fun and profit. Also, adding in the lifetime cost of HRT, it's almost certainly cheaper to have them fix me than (try to) fix my balls. I calculate $53 a year based on the injectable stuff.

So, if we can do the diagnostic nerve block and the surgery the same day, is there any reason not to get fixed by Friday? I literally cannot think of a single reason to wait unless my insurance covers sperm banking.

Re: Why Wait?

Posted: Wed Feb 25, 2015 8:21 pm
by kristoff
ZeuterMe (imported) wrote: Wed Feb 25, 2015 6:10 pm As mentioned in my other thread, (http://forums.eunuch.org/showthread.php ... post255155) there's a flowchart published on the Orchialgia group. I've exhausted all the treatments that are both conservative and long-term-viable. Psychotherapy is just teaching you how to enjoy living in pain, TENS electrodes won't stick, and I'm not keen to get on opiates (which actually lose their effectiveness, even as they shut down your personality).

I've requested an appointment for nerve blocks, and I'm holding out hope that it'll reboot the nerves involved. If, however, there's still tissue damage to cause the nerves to act, then a reboot will still end with unacceptable amounts of pain, even if it confirms that it's not simply a nerve ghost.

My doctor was talking about referring me to a UF program for robot-assisted epididiectomy. I'll have the whole things out before I do that; the robotic surgery will still leave me sterile, and I could have the option of managing my own biochemistry for fun and profit. Also, adding in the lifetime cost of HRT, it's almost certainly cheaper to have them fix me than (try to) fix my balls. I calculate $53 a year based on the injectable stuff.

So, if we can do the diagnostic nerve block and the surgery the same day, is there any reason not to get fixed by Friday? I literally cannot think of a single reason to wait unless my insurance covers sperm banking.

Doing injections and trying to maintain a fairly steady level without peaking and dropping, you'll want to do injections weekly. For the period I was injecting a few years ago when I temporarily lost my insurance, I would do 1cc a week. A vial was good for 10cc and cost 75$ plus supplies. Sometimes nursey roomy would shoot me up, other times I would put it in my leg. Fortunately, insurance resumed and I am on daily Androgel. Works well for me.

Most of the folks I have talked with over the years who have dealt with testicular pain have done it for several years. Progress was usually only made when doctors were fired, replacements found, sometimes a few times, and folks became very direct, assertive, and at times insistent. Be well informed and logically lay the situation out for them step by step and bring them to your conclusion.

Re: Why Wait?

Posted: Wed Feb 25, 2015 11:05 pm
by ZeuterMe (imported)
I planned on weekly injections, or, if insurance will cover it, pellet implants.

I think I'm within a week of the 2.5 year mark of the first occurrence. My doctor has done his due diligence, ruling out infections, nearby systems, injury, and cancer. He now agrees I'm running out of good choices. We're now on "Nerve blocks and pray for the best".

If nerve blocks work - which I believe they will, for personally identifying reasons I shan't list here - then that means I need some kind of groinal surgery.

Epididiectomy is ruled out because the pain's not focused there.

Neurotomy is no longer easy to find. I'd need to find someone to do it who's pretty much never tried, so I consider this an honorary experiment.

Four experimental protocols are available. They are:

• Radiosurgical ablation of the sperm cord's nerves

• Botox ablation of the sperm cord's nerves

• Zeuterin - we have one tantalizing example of a week of remission with bathtub neutersol. If I'm up for removal anyway, I don't really have anything to lose, and I might be able to provide some nifty new science.

Between calling to arrange the nerve block and surgery, how fast do you guys think I can get this shit done? The faster I do, the fewer days of my life spent in pain.

Re: Why Wait?

Posted: Thu Feb 26, 2015 5:26 pm
by ZeuterMe (imported)
I suppose, hypothetically, I could have one nut treated with neurotomy, and only one removed, or perhaps talk of this plan could be used to persuade the program to try treating both. It could also convince them not to deal with me at all.

Nerve blocks are scheduled for next week. A thrill of terror courses through all I do, now.

Re: Why Wait?

Posted: Thu Feb 26, 2015 7:37 pm
by Wellesley (imported)
Consider asking that one be removed at a time.

usually they are a lot more open to that.

I hade mine out 3 years apart

Like you say if the diagnostic nerve block is a success then .... why wait.

Well.... The doctors will then want to run other options I think. The denervation is a risky one IMHO with the success rate being lowish and the only main reason for that treatment option would be to preserve fertility.

Re: Why Wait?

Posted: Fri Feb 27, 2015 5:56 pm
by micdavi24 (imported)
There is only one sure fire cure for the problem, removal, why not just bite the bullet and overcome your fears and have them out, problem solved.

Re: Why Wait?

Posted: Fri Feb 27, 2015 11:39 pm
by ZeuterMe (imported)
Wellesley (imported) wrote: Thu Feb 26, 2015 7:37 pm Consider asking that one be removed at a time.

usually they are a lot more open to that.

I hade mine out 3 years apart

Like you say if the diagnostic nerve block is a success then .... why wait.

Well.... The doctors will then want to run other options I think. The denervation is a risky one IMHO with the success rate being lowish and the only main reason for that treatment option would be to preserve fertility.

Neurotomy is getting reliable; it's only like 71% compared to radical orchiectomy at 76%. The follow-up period is only a year, though. I have concerns about longer-term success rates; I've read anecdotes about the nerve regenerating, and while the plural of "anecdote" isn't "data", it's all I got. I don't look forward to $50,000 surgery every few years, from a financial standpoint, either. (The local program, well respected, charges
micdavi24 (imported) wrote: Fri Feb 27, 2015 5:56 pm $25,000 a nut and worse, only want to treat one side!)

There is only one sure fire cure for the problem, removal, why not just bite the bullet a
nd overcome your fears and have them out, problem solved.

That's the solution I'm leaning toward, but I haven't made up my mind, or confirmed that it would do anything to help.

Re: Why Wait?

Posted: Tue Mar 03, 2015 10:26 pm
by ZeuterMe (imported)
micdavi24 (imported) wrote: Fri Feb 27, 2015 5:56 pm There is only one sure fire cure for the p
ZeuterMe (imported) wrote: Fri Feb 27, 2015 11:39 pm roblem, removal, why not just bite the bullet and overcome
your fears and have them out, problem solved.

Actually, it's not surefire. Per the effective rate published in "Microsurgical Denervation of the Spermatic Cord for Chronic Orchialgia: Long-Term Results From a Single Center", we can see that inguinal orchiectomy is completely effective in 73% of cases, and offers relief in all other cases when a complete cure is not possible. Scrotal orchiectomy is crap by comparison, at 55%. The study is tiny, however, suggesting an 18% chance the conclusions drawn are completely false. Testicular denervation - using the protocol described in the paper - is a cure 71% of the time, partially effective 17%, and completely fails 12% of the time. There's a 12% chance that's completely false, however.

Lapariscopic denervation, by comparison, had a 0% cure rate. I believe I need offer no further attention to this procedure.

Orchiectomy, however, was quite consistent in providing some relief, with only one failure among three studies, with a margin of error of less than 10%. (1 in 24, confidence 99% or p of .01) Adding all the different denervation studies and treating them as one larger dataset, representing the "I walk into the urologist's office and request a denervation" scenario where you don't know what protocol you're going to get, denervation has a failure rate of 8.5%; orchiectomy offers only a 4.1% chance of complete failure.

I don't have any data on a Botox block, but they look promising.

Epididyectomy is a complete joke. Of all 26 balls treated, only one patient experienced a cure. 23 were improved, and two results are unknown.

Pulsed radiosurgery, a minimally invasive approach described in "A Novel Treatment of Chronic Orchialgia", took on six balls in the most crippling pain (9.5, on average), cured two, and reduced the other four to merely annoying levels of pain (1.5 on average). Actual levels of improvement are:

10-2, 8-0, 9-1, 10-0, 9-2, 9-1This is really quite good, but my insurance won't cover experimental treatments. At least botox blocks are described on a single solitary urologist's website.

What orchiectomy also has going for it? Cost. If my insurance fully covers it, I could get out for $250 with a year's worth of drugs, followed by a maintenance cost of $50 per year. Botox blocks, if my estimate is anywhere near correct, will average to $100 a month for the rest of my life, without addressing the underlying cause. Also, since chronic inflammation has a statistically significant correlation with with cancer, and the literature describes a form of teratoma capable of mimicking simple cysts on ultrasonic examination. I would posit that the permanently existing inflammation probably isn't great for your odds of not developing a malignancy, and not being able to feel them would tend to make it harder to notice clinically relevant changes until the tumor has grown a fair bit.

TL;DR - there's no surefire treatment, contrary to popular belief; epididyectomy is crap; you can make a solid case for orchiectomy even without our bias, based on its best-in-class results and rock-bottom price compared to organ-sparing approaches. All of this should be taken with a grain of salt, because P values (the percent chance the conclusions are bullshit) this high would give any self-respecting scientist heart palpitations.

Re: Why Wait?

Posted: Tue Mar 03, 2015 10:30 pm
by LeatherPup (imported)
Went through all of that myself. Eventually surgical denervation of the spermatic cords totally eliminated the pain in both testicles until about two months ago when a really nasty life threatening infection necessitated bilateral radical orchiectomy.

Re: Why Wait?

Posted: Tue Mar 03, 2015 10:51 pm
by ZeuterMe (imported)
Well, in order I realized them: I'm glad you're better. I'm sorry you had to go through that. I'm glad you're alive. :p

I hope your recovery is going smoothly. Also, I like that signature. :)