newbie confused

[amied]

i am scheduled for nesbit sep13.  i have been depressed anyway, regardless and before this issue. i have only now begun to worry.  lots of questions.  has anyone heard of vitamin e or other medicine helping early on?  what about the "leriche" technique?   in my case, for nesbit, the doctor said the scarring is too deep to touch and had not heard of leriche.  he is a well recommended specialist in this procedure.  yet he, and no-one i read here, speak of pain from the operation.  i did not realize one has to abstain for a considerable period after the operation.  i had even considered riding my bike home the next day, from the way the procedure was described as minor surgery, that i could drive home by car with accompaniment. my surgeon said length reduction would only be be about 0.5cm but from what i read it will be parallel to the curvature thus 3-4 cms.  i am just becoming aware of some of the real the issues.   this problem developed and i must have bottled up my feelings throughout. mainly i was relieved it was benign.  i thought the course of vitamin e was a joke.  has anyone you've heard of benefited from vit e - should i try big doses again?  thanks from depressed, confused and becoming scared.   be well all.

[Skjaldborg]

Amied,

Vitamin e is not very useful. I do not believe that anyone here has had any positive results from it. However, one drug that is useful is pentoxyfylline. It has been shown to reduce scar tissue size and reduce pain. Many here have used it and reported benefits from it.

I have a question about your surgery: is your curvature too severe for sex? Do you have ED? Most doctors only recommend surgery if sex is impossible. Also, most doctors won't perform surgery in the early (active and painful) stage of the disease.

If you are able to have sex now and have good erectile functioning, I suggest getting a prescription for pentoxyfylline and perhaps postponing surgery. Surgery is seen as a last resort on this forum.

Best of luck,

Skjald

[james1947]

Amied

I will second Skjaldborg, surgery is the last instance, we have very little evidence on the forum that vitamin E helps and Pentox is the number 1 medication according to the forum members opinion
I am proposing you to read (if you didn't read yet):
MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums
A lot of concentrated usefull information.
Regarding Leriche technique had some debates on the forum:
Lariche technique - Treatment of Peyronies Disease in the Stable Phase - Peyronies Society Forums
Is the Leriche technique successful? - Peyronies Society Forums
You may find more info on the forum if you will make a search.
By the way, how many surgeries your doctor is making monthly? It is an important factor in deciding to go with him or not.

Welcome to the forum
James

[amied]

can someone comment on pain and recovery from nesbit?  not that i will not read from the forum but it would be nice to have a direct communication esp. from someone with experience.

more newbie background and venting:

i am 50.  due for nesbit op. i have read the new member forum.  leriche interests me.  it does not seem to be an option for me due to lack of surgeons in this area.  the three urologists i saw were not aware of the procedure.  i am surprised because when i google "leriche", israel comes up as a medical tourism venue and sheba hospital is first on list.

( Peyronie's Disease Treatment in Tel Aviv, Israel )

israel is advanced medically speaking.  the three urologists i saw did not mention pentoxyfylline at all.  all three do nesbit operation.  all three are surgeons in different hospitals.  i did not like the first.  the second was senior and i believe a dysfunction specialist, i went to him for a second opinion, and he recommended a list of peyronie operation specialists.  the hospital (sheba - tel hashomer in israel) i chose is reputed to have the best  urology dept.  and the surgeon is one from the recommended list.  i was unable to request him specifically, he was chosen by the hospital based on his expertise.  i do not know how i can find out how many operations he has performed.  
i do not have "ed" nor significant pain on erection, however i find it hard to get erection with my partner of 26 years (since this condition although she is supportive) and when i do (and i do) cannot perform because my "utility" folds at the bend and does hurt.  i have not tried the viagra initially prescribed and in my medicine cabinet...

i have been on long term medication with ssri's , snri's  plus plus (on four depression medications now) plus high doses i do not take every day of bondormin and clonex.  i also take very heavy doses once a fortnight of percocet (for severe chronic pain post op with internal fixture 9 screws).  plus some medication for "LUTS" and statins.  i wonder if these medications have been significant in bringing on peyronie.  i do recall my penis being bent painfully during sex prior to onset but i had no pain later just discovered a lump some months later and now i'm over 12 months since diagnosis with peyronie.
i appreciate the response and attention given me.  i will now consider re-approaching urologist number two and asking about these medication, supplement options. it is also helpful to vent a bit. -  thanks health and happiness to all.

[amied]

ps "LUTS": Lower Urinary Tract Symptoms, in my case successfully treated by tamsulin.  http://en.wikipedia.org/wiki/Tamsulosin

[Jonbinspain]

Aimed,

You should be aware that very few Urologists are experts on Peyronie's disease. These guys may be top Urologists, but not necessarily top Peyronie's treatment specialists.

I live in Spain and to be frank I seem to know more about this disease than the two Uro's I have seen. Like you, they insist the only option is surgery - plication. I personally do not wish to go down that road at this time. I am using Pentox, ALC, and l-Arginine and will shortly begin using traction.

Depending on the degree of curvature, your ability to engage in sexual relations, etc, surgery really should be the last resort. Again, dependant on your level of "disability", if I may call it that, you may wish to hold off on surgery until you have explored all other options.

[Obsie]

Amied,

You are already having an impressive cocktail of drugs, some of them not very light to say the least. From a medical standpoint, this is not desirable because every drug has adverse effects, particularly when combined with other molecules, yet it is difficult to know exactly which interactions because even during clinical trials patients do not take all the drugs that people take in real life.

So, I would really suggest caution there, whether it is Viagra or Pentox or any other drug you might want to try. You want to discuss this topic with your MD, and he should check for known interactions. But if he is the one who prescribed statins, it is perhaps a good idea to have a second opinion with another doctor less prone to prescribing drugs. Statins should only used if you already have an history of cardiac / atherosclerosis problem due to cholesterol, but it should not be used in other cases, ie with patients with high cholesterol levels but no symptom. That type of prevention can be particularly harmful and is conducted only because of drug labs policies regarding trials, prescription and medical marketing, but there is little to no scientific ground for primary prevention. i could write a book about this, as I know these guys fairly well to say the least.  If you are in the second case (no symptoms) a change of lifestyle is often enough to significantly reduce any risk, first with food (less sugar, no processed food, less fat etc, the well known mediterranean diet) and then with physical activity 3 hours a week minimum (if you had no physical activity recently it is recommended to see a cardiologist and take an effort test to assess your limits, then work with a coach for instance at a fitness center)

I realize all these recommendations are a bit off topic, but there is evidence that polymedicated patients with multiples diseases present a much higher risk of complications. The thing to avoid is taking one prescription from one doctor, and one prescription from another. I say this because from your description it seems that you have the tendency to see different doctors. While I understand the need for this, remember that communication with the physician is essential, so that each MD you see knows exactly what drugs you take, at which frequency and since when, and any adverse effects you may experience, for instance chronic pain in legs etc. This is particularly important, it is proven that 5% of polymedicated patients create very severe interactions.

For this reason I would recommend that you do not try self-medication, and that you do not take Pentox or anything else - including vitamin E- before discussing your current medications in detail with your MD and asking him to make sure interactions are kept under a reasonable level. Before any surgery make sure you speak in detail with the anesthesiologist about these treatments you have.

Remember that drugs companies have a commercial agenda, and doctors are not immune to this. Respected professors go to congresses that are of little value to them, scientifically, because to be a speaker at a convention in front of your peers means to be recognized, even if their work speaks for itself. The same professor will then meet you and look at you condescendently because he recognizes himself as a leader in his field, therefore he cannot be wrong. But in fact he will prescribe you drug XYZ not because you need it or not because there is no alternative less risky treatment, but only because it is supposed to work in your case and because he was flying business and stayed in a 4 star hotel, all paid by the manufacturer of the drug. And he wont even realize it. (Of course this is a generalization but you get the idea)

In some ways the same reasoning applies to Peyronies Disease. someone who meets an urologist specialized in surgery will be offered surgery, not because it is the best treatment but because it is what the surgeon knows best, and has confidence in. Besides it is nice and easy surgery and it brings good money. Even  patients in the acute stage get this recommendation which is a medical nonsense.

[moteyi]

can someone comment on pain and recovery from nesbit?  

My op was nearly 2 weeks ago. I was in hospital from 07h30 until 18h00 the following day. Pain not too bad from the wound but uncomfortable for the first 4 or 5 nights due to night time erections. FWIW, since leaving the hospital I've not needed to take any pain meds. I was able to drive a couple of days after coming out of hospital although I've not done any heavy physical work in the last 10 days.

HTH