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Someone Gave Me Links to Utube Info on ED - Cant find them

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Posted 8/2/2013 10:27 AM (GMT 0)
Someone from this forum gave me links (3 of them) that are on Utube about info on ED. They were lectures from a doctor. Can anyone help me find them again?

My BF and I went to the uro yesterday, and the uro said it wasn't important for my BF to use the pump because he didn't have his nerves spared.

So, I want to view those utube videos on ED again. Maybe it will answer my question: Is it true he doesn't have to use the pump???
Posted 8/2/2013 2:41 PM (GMT 0)
bumping this up. I believe you are talking about the links Tall Allen linked by the same specialist who our poster Bluebird visits with her husband. When either see this I am sure they will link them again. Talking offline with Bluebird might be of great assistance.
Posted 8/2/2013 3:28 PM (GMT 0)
I think you are referring to the Mulhall YouTube videos for which PeterDisAbelard recently provided these links:

Sexual Health Problems in Men with Cancer -- Sloan-Kettering
Cancer Treatments Can Cause Erectile Dysfunction -- Sloan-Kettering
Penile Rehabilitation After Cancer Treatment -- Sloan-Kettering

I had provided a link to a technical lecture he made in 2010 to his peers:
Mulhall lecture on erectile function preservation and rehabilitation

- Allen
Posted 8/2/2013 3:29 PM (GMT 0)
I remember those videos! I forget who linked them but there was a set of three. Yep.

Was Dr. Mulhall the doctor giving the lecture?

http://www.youtube.com/watch?v=ie8NkOu2VNA
Posted 8/2/2013 3:55 PM (GMT 0)
Hello Cowgirl,

Good to hear from you. I think it was me that gave you the links to the YouTube videos last time. Tall Allen beat me to them this time. Whenever anyone asks for them I have to find them in an old email that I sent to my wife when I was first diagnosed so she would have some idea what and why. Tall seems to have a better filing system (and how could he not?) and he beat me to answering your question.

How are you doing? I seem to remember the last few times we talked that you BF was pretty cranky. Is he doing better? If he's not using the pump is he doing anything? We're here if you need us.
Posted 8/3/2013 1:48 AM (GMT 0)
If the surgeon says the nerves were not spared, it would mean that he took the bundles. But, according to a surgeon whose book I read a year or so ago (don't remember the name, but the book was technically edited and printed so badly that I couldn't tell anyone to spend money on it), there is a good possibility that some few nerves might escape the knife, and that others, if the distance was not too great, might reconnect.

I can't speak to the validity of that opinion, but my surgeon also contends that it is possible. He doesn't like the pump, but feels it is better than doing nothing. He prescribed that and daily 5mg Cialis for me. After some time, he added trimix. I will say that the same dose of trimix has had increasing good result, as I got to the correct dose.

Is all of this going to work? I don't know that, but at almost 4 years out I'm on Lupron, so I'll have to wait a while yet to find out.

Posted 8/3/2013 3:17 PM (GMT 0)

cowgirl53 said...
My BF and I went to the uro yesterday, and the uro said it wasn't important for my BF to use the pump because he didn't have his nerves spared.

So, I want to view those utube videos on ED again. Maybe it will answer my question: Is it true he doesn't have to use the pump???

My understanding is that the purpose of the pump (or injections or MUSE) for post-op rehab is to preserve penile tissues. Whether or not nerves were spared, this rehab would still be important in order to be able to obtain erections using injections or MUSE down the road. So unless the decision is made to have implant surgery, rehab is important.
Posted 8/3/2013 3:22 PM (GMT 0)
I am doing just ok; I guess. He might still have some cancer in his back. According to the Dr when I asked him right after surgery. I said to him; someone told my BF that there was a spot on the CT scan showing up in his back. The surgeon said there was no spot. Now after our appointment on Thursday; his nurse called my BF right after out appointment and told him 'off the record' because she can't do anything about it. But the CT scan does show a spot in his back. So, now I have ordered copies of the medical records and a copy (picture on CD) of the CT scans. The nurse said we weren't asking the right questions. I don't know what that means cause I haven't connected with her yet. She is a breast cancer survivor. I am looking forward to talking with her, but won't be until next week.

Again according to the Dr. his PSA was 0.13 and the cancer is gone. He also said that the PSA test is a test to indicate if there is cancer in the body. So if that is the case that PSA indicated someone has cancer in their body. Why don't they do PSA tests on everyone??? Neither of us understand that...

142,
As for my BF he is not using anything for ED. The Dr offered samples of MUSE and he refused them. The Dr. said he would like him try MUSE before injections. My BF said he isn't ready for either. And that is when the Dr said; well the pump isn't any good since your nerves weren't spared.

142,
I have read that 10% of men that didn't have their nerves spared can get natural erections. So, I pray to god that my BF is one of them. But if he doesn't do anything to preserve his sponge cells; I don't think there will be any chance of ????
Posted 8/3/2013 3:23 PM (GMT 0)
Even if a man does plan on getting an implant my understanding is that some types of rehab are helpful. They size the implant so it will fit and if things are allowed to shrink before implantation...
Posted 8/3/2013 3:41 PM (GMT 0)

cowgirl53 said...
The Dr offered samples of MUSE and he refused them. The Dr. said he would like him try MUSE before injections. My BF said he isn't ready for either. And that is when the Dr said; well the pump isn't any good since your nerves weren't spared.

That doesn't really make sense. Besides rehab the pump can also be used long term instead of injections / MUSE / implant.
Posted 8/3/2013 5:03 PM (GMT 0)
Cowgirl,

I missed your last comment because I was typing my note about using a pump if a man plans to get an implant.

When you talk to the nurse you might ask if she knows another doctor in the area from whom you could get a second opinion. Or if you tell us what city you live in someone here might know of someone your BF could talk to. A kind of a doctor called a "medical oncologist" might be a good choice. Your BF's surgeon has mostly done what he can do about the cancer, if any remains it will be up to other doctors to deal with that. Whether that happens will depend on what your BF's PSA score does over the next year or two. But if you are worried about that CT scan you could get a second opinion from a medical oncologist now.

A PSA test is the usual test that is done to see whether there is prostate cancer present. It's pretty good on one side but kind of wobbly on the other. The good side is that if there is prostate cancer there there will be an elevated PSA reading and as the cancer grows the PSA reading will go up. The wobbly part is that there are a few other things that can cause PSA to go up so it's not always cancer. That's the reason that doctors don't just give PSA tests to everyone they see -- it would cause needless worry to men who, say, have sex the night before they have their blood drawn (one of the things that makes a man's PSA go up).

Your BF's PSA, at 0.13, is neither alarmingly high, nor reassuringly low. For a man four months out of surgery it is a number that most doctors will say not to worry about but the doctor will secretly worry just a bit and make a note to keep an eye on it. If it stays about the same life is good. But if it creeps up then something might have been missed. On the other hand it is low enough to make me think that the spot on the CT scan is probably something else.

My best guess about why the doctor said that since he didn't have his nerves spared that the pump was no good is that the doctor might have been worried about getting enough oxygen into the tissues. When a man gets an erection from vasodilation (either from nitric oxide release by the nerves or from MUSE or an injection) then the penis fills with oxygenated blood coming from the heart. On the other hand, when a man uses a pump blood is drawn in both from the arteries (oxygenated) and from the veins (no oxygen). This 50/50 mix is better than nothing but less than one would hope for.

When a man keeps his nerve bundles then, even though he may not get erections he can use for sex, he will get some improved blood flow when he has sex (however he does it) and during his nocturnal "erections" which might not be noticeable. With the nerve bundles gone for best results he probably needs something else to get oxygenated blood into his willie.
Posted 8/3/2013 5:34 PM (GMT 0)
You can always search Youtube.com for things related to prostate cancer by searching "ED Prostate" or "erectile prostate cancer". In fact, you will get many links of potentially even more videos. Youtube has some excellent resources for prostate cancer patients for many things related to this experience...

Tony
Posted 8/10/2013 8:40 PM (GMT 0)
PeterDisAbelard,
I have talked to the nurse concerned. She felt that there were spots showing up on his L4 & L5. The CT scan writes that off as arthritis. The final results say 'no metastatic was found. I think what we will do is just wait for the next PSA test to see if it rises.

I think he is using the pump. FINALLY!!!

I called the doctor about him saying 'yes use the pump' and then later saying 'oh it doesn't matter if you use the pump because you didn't spare the nerves.' That doctor must have yelled at his nurse. She was very rude when she called me back. I just told them that we were confused; was he supposed to use the pump or not? And does the pump get oxygen into his penis? She yelled saying if Craig wants to know more, he is supposed to make another appointment. I have never dealt with such rudeness. When she was done yelling, I just said 'thank you'. And then she settled down. UGH!!! That office doesn't have a good bedside manner at all. I have read reviews online (of course after the surgery) that his doctor has yelled at patients and family members. That just isn't right. Here we are trying to deal with the big 'C' cancer; and they are not being considerate of what we are going through, and not being educated about it.

Do you think he should see an ED Doctor? We live in Minnesota. SW of the Twin Cities.

I appreciate everyone's support here!!! :)
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