Hello friends...

The final frontier. Deciding when, if and how.
roksolid
Posts: 58
Joined: Mon May 07, 2018 4:35 pm
Location: Montgomery County, MD

Hello friends...

Postby roksolid » Wed May 09, 2018 11:11 am

Hello friends!

I never thought I would get to this point in my life (who does, really?) but now I am on the cusp of starting my journey to restoring my manhood.

I'm 47 years old and I work for the Federal Government in Washington DC. I live in NW Maryland with a wife and 3 cats. I was diagnosed with Multiple Sclerosis almost 18 months ago although my ED problems go further back than that (> 5 years). Perhaps the slow creep of erectile difficulty was a small sign of my impending brain demylination, but the series of seizures I had in the 4th Quarter of 2016 finally cemented the diagnosis. I lost other things too (mid-range short term memory, some cognitive function, etc.) but the most bothersome of all was the almost total loss of my erection.

I went to see my urologist last week, thinking that she could give me some Cialis that I could try to take daily, but we were both met with a surprise: It seems there is evidence that PDE5 inhibitors decrease the seizure thresholds in patients suffering from epilepsy. Now I haven't had a seizure in 16 months, the fact that I had multiples within a span of time qualified me as an epileptic. Yay me.

I really wasn't too keen on sticking needles (or anything else for that matter) in my dick. Ain't gonna happen. And I know friends personally who have the Vac-u-Jack. Not a fan.

I'm at peace with the fact that the MS isn't going to go away, and the neurological basis for my ED isn't going to magically cure itself, but I'd really like someday to use my penis for something other than a dust cover for my butt crack. The more I read about the prosthesis, frankly, the more I like it. One less pill to take (I take too many as it is) and I don't have to try so get and maintain an erection AND keep it going to maybe get an orgasm out of it.

If anybody ever took that test the urologists give you to score your erectile dysfunction (the one that scores from 1 to 24)...I scored a 7. And I was being generous with myself.

So I'll be around, lurking and posting. I hope to get a lot of good information and wise advice before my day comes.

rok
The Rok is now solid! Implanted 8/14/18. AMS700CX (21+1)

"That magic in your pants is making me blush!" --Kesha

Jawalt
Posts: 23
Joined: Fri Jul 21, 2017 8:09 pm

Re: Hello friends...

Postby Jawalt » Wed May 09, 2018 11:46 am

roksolid
You are dealing with a whole lot of stuff right now. If I was going to give any advice it would be to take the problems one at a time and keep moving on. The one thing I would weigh in on is the ED. I suffered many years before I could get relief in this area. The implant is a major thing and only you can balance it among your other challenges. I wish you well in your future efforts.
Implanted Dec 2016 by Dr. Morey, UTSW Dallas. AMS 700. BPH caused problems so Supra Pubic Catheter and Urolift Prostate implants. End results great. Botched implant by Dr. in Waco, TX 2006. After 10 years, went to Dr. Morey who made me whole.

roksolid
Posts: 58
Joined: Mon May 07, 2018 4:35 pm
Location: Montgomery County, MD

Re: Hello friends...

Postby roksolid » Wed May 09, 2018 12:23 pm

Hi Jawalt...

It is a lot of stuff but MS is a lifetime thing. I've wallowed in my own pity over it long enough, and I'm grabbin' the bull by the balls and starting to reclaim what it tries to take away. As I see it, the implant is a nice permanent solution that my body won't build a resistance to (like medication).

And after a preliminary phone call I made to my health insurance this morning, the prosthesis is covered 100%. I have an initial consult appointment with a doctor in Rockville, MD at the end of the month to see what he thinks.

rok
The Rok is now solid! Implanted 8/14/18. AMS700CX (21+1)

"That magic in your pants is making me blush!" --Kesha

newbie443
Posts: 1841
Joined: Fri Dec 01, 2017 9:41 pm
Location: Sedgwick county, Kansas USA

Re: Hello friends...

Postby newbie443 » Wed May 09, 2018 4:48 pm

Welcome to the site. Best of luck to you going forward with this. Ask any questions you have. This is the place for it.
Injections failed. Implanted 3-21-18 AMS 700 LGX 21 + 1 RTE 100 cc reservoir 6.5" L 5" G Dr. Kramer.

Proximal Perforation Sling Repair 4/13/21 Dr. Broghammer

66 years young.

Will show and tell and talk with others.

radioradio
Posts: 1012
Joined: Tue Aug 09, 2016 2:44 pm
Location: Philly Burbs

Re: Hello friends...

Postby radioradio » Wed May 09, 2018 6:22 pm

Welcome,
Glad you found this place. Lurk away!
Wish you the best, and glad you’re taking the bull by the horns.
PM me any time.
Bob
Born '52. Married '79. RALP 3/1/17. ED 50+% prior to surgery even w/ meds. VED, Injections, ineffective. Considering implant even before PCa diagnosis. Dr. Kramer 8/2/17. LGX 21cm+0.5 RTE. Kramer replaced/repositioned pump 12/13/17. Willing to Show/Tell.

ccrider
Posts: 237
Joined: Fri Dec 09, 2016 5:42 am

Re: Hello friends...

Postby ccrider » Wed May 09, 2018 11:09 pm

roksolid wrote:Hi Jawalt...

It is a lot of stuff but MS is a lifetime thing. I've wallowed in my own pity over it long enough, and I'm grabbin' the bull by the balls and starting to reclaim what it tries to take away. As I see it, the implant is a nice permanent solution that my body won't build a resistance to (like medication).

And after a preliminary phone call I made to my health insurance this morning, the prosthesis is covered 100%. I have an initial consult appointment with a doctor in Rockville, MD at the end of the month to see what he thinks.

rok


Make sure you speak to Dr. Kramer...he's right around the corner in Baltimore...
...69 years old, married over 30 years, serious ED for around 10 years. AMS 700 LGX 21 cm +3 cm RTE implanted by Dr. Andrew Kramer on Dec 7, 2016.

Frank Talk Admin
Site Admin
Posts: 656
Joined: Mon May 18, 2009 11:06 am
Location: NYC

Re: Hello friends...

Postby Frank Talk Admin » Fri May 11, 2018 9:20 am

Roksolid
So sorry that your really great post got hijacked. I apologize.
Welcome and please do continue to post!

Thanks
Paul

Larry10625

Re: Hello friends...

Postby Larry10625 » Fri May 11, 2018 9:40 am

roksolid wrote:Hello friends!

I never thought I would get to this point in my life (who does, really?) but now I am on the cusp of starting my journey to restoring my manhood.

I'm 47 years old and I work for the Federal Government in Washington DC. I live in NW Maryland with a wife and 3 cats. I was diagnosed with Multiple Sclerosis almost 18 months ago although my ED problems go further back than that (> 5 years). Perhaps the slow creep of erectile difficulty was a small sign of my impending brain demylination, but the series of seizures I had in the 4th Quarter of 2016 finally cemented the diagnosis. I lost other things too (mid-range short term memory, some cognitive function, etc.) but the most bothersome of all was the almost total loss of my erection.

I went to see my urologist last week, thinking that she could give me some Cialis that I could try to take daily, but we were both met with a surprise: It seems there is evidence that PDE5 inhibitors decrease the seizure thresholds in patients suffering from epilepsy. Now I haven't had a seizure in 16 months, the fact that I had multiples within a span of time qualified me as an epileptic. Yay me.

I really wasn't too keen on sticking needles (or anything else for that matter) in my dick. Ain't gonna happen. And I know friends personally who have the Vac-u-Jack. Not a fan.

I'm at peace with the fact that the MS isn't going to go away, and the neurological basis for my ED isn't going to magically cure itself, but I'd really like someday to use my penis for something other than a dust cover for my butt crack. The more I read about the prosthesis, frankly, the more I like it. One less pill to take (I take too many as it is) and I don't have to try so get and maintain an erection AND keep it going to maybe get an orgasm out of it.

If anybody ever took that test the urologists give you to score your erectile dysfunction (the one that scores from 1 to 24)...I scored a 7. And I was being generous with myself.

So I'll be around, lurking and posting. I hope to get a lot of good information and wise advice before my day comes.

rok



Good morning Rok;
Being a member of the health care team I am very interested in the connection of PDE5 and epilepsy. I have attended to many patients who have severe epilepsy and have found NOTHING that works for them. Some of my patients have had several seizures a day. As you know, when you are seizing, you are not breathing so, these patients are living in a confusing, depressing state. One of the really cool things I like about working in healthcare is the treatment of conditions that were discovered accidentally. For example, they discovered that when women go in to premature labour, giving them nitroglycerine, frequently stops the labour because nitro is a smooth muscle relaxant... weird eh? I am glad Cialis is working so well for your seizures and if you move forward and get the implant, you won't be disappointed. Good luck. :)

Larry

roksolid
Posts: 58
Joined: Mon May 07, 2018 4:35 pm
Location: Montgomery County, MD

Re: Hello friends...

Postby roksolid » Fri May 11, 2018 10:40 am

I want to thank everybody for the responses. I would have posted yesterday, but I was having medication issues and decided to cut my losses and stay in bed.

I appreciate the recommendations for Dr. Kramer in B'more. He is on my list of doctors I am interested in talking to (as is Dr. Eid in NYC) but the first requirement has to be that they are in-network on my health plan. The MS does a number on the health benefits (I usually have satisfied all deductibles, co-pays, and out of pocket costs for the whole year by just the 2nd month). So...an IPP procedure will very likely cost me nothing but time off work and pain.

And another thing that my wife had me thinking about: With all of these doctors who claim their "stock and trade" is in IPP procedures...how much is too successful? Am I going to get "mowed down" by the stampede of men matriculating through his practice from first consult to final followup? Is there such a situation where he is doing so many procedures that quality becomes lacking? I don't want to get into a "my doctor is better" flame war, but maybe I would ultimately be better served with a urological specialist that does maybe a half dozen to a dozen of these procedures every month or couple of months.

Just something buzzing through my head.

And Larry: I was indeed surprised when I found out about the seizure risk. I am not a rampant epileptic...my attacks are not of the tonic/clonic variety. Of the seizures I have had, most have been of short duration partial absence variety (with the exception of an hour-long NCSE). I'm already on amitriptyline for the MS migraines (and that is also known to lower seizure thresholds) so I was really not thrilled about additional meds to further encourage a future seizure.

Hence my decision to investigate a non-pharmaceutical approach.

rok
The Rok is now solid! Implanted 8/14/18. AMS700CX (21+1)

"That magic in your pants is making me blush!" --Kesha

Floridabionic
Posts: 15
Joined: Sat Mar 03, 2018 10:59 pm

Re: Hello friends...

Postby Floridabionic » Fri May 11, 2018 12:21 pm

roksolid wrote:And another thing that my wife had me thinking about: With all of these doctors who claim their "stock and trade" is in IPP procedures...how much is too successful? Am I going to get "mowed down" by the stampede of men matriculating through his practice from first consult to final followup? Is there such a situation where he is doing so many procedures that quality becomes lacking? I don't want to get into a "my doctor is better" flame war, but maybe I would ultimately be better served with a urological specialist that does maybe a half dozen to a dozen of these procedures every month or couple of months.

Just something buzzing through my head.

rok


Your wife sounds like a very smart and wise woman. There are definitely concerns when you go with high volume surgeons, on the flip side they are high volume for a reason(experience). Post-op is also a concern and someone within driving distance but the right amount of experience would be great. Best wishes!
53 years old, married 25 years. Peyronies & ED Implanted 3/28/18 by Dr. Kramer. AMS 700 LGX 21+1.


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