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sandflylarry
Posts: 9
Joined: Feb 2015

Has anyone had a problem with the control pump for the ams 800 being in the wrong place? It seems like it horizontal instead of vertical like the pictures I have seen. It was installed on Monday, Feb. 16.  If so, should I be contacting my doctor about this issue before my 2 week appointment? Thanks for any advice on this matter.

Josephg
Posts: 158
Joined: Jan 2013

Hi Sandflylarry,

If it were me, I'd have a conversation with the surgeon, now.  You just had the surgery, and there is a tremendous amount of swelling in that area, so that may also have an impact on what you are experiencing.  The more usual issue is having the pump located too high within the scrotum, with the surgeon advising you to gently pull downward on the pump several time per day, in the first few weeks after surgery.  The ultimate position of the pump is critical for ease of operation.  Also, you don't want the pump hardware (tubes) to become entangled with the natural tubes, blood vessels and nerves that connect to the testicles within the scrotum.

My layman opinion is that perhaps you have too much pump tubing in the scotum, thus moving the pump into a horizontal position, versus hanging vertically within the scrotum (purely a guess on my part).

I believe that there is a limited window of opportunity to make adjustments to the pump position within the scrotum, before the opening created to drop the pump into the scrotum heals and closes around the pump's tubes.

You will experience some discomfort as the pump contacts the inside on the scrotum wall or the testicles for a while, until the sensitivity of that area subsides over time.

sandflylarry
Posts: 9
Joined: Feb 2015

Thank you for your input. The Homehealth nurse is coming back on Monday and I can run it by her. She really had no knowledge of this procedure untill I should her the paperwork that I had on this.  I think she can get direct contact with the Urology doctor or sombody in the office. Thanks again

jimco236
Posts: 10
Joined: Nov 2012

I was never advised to do anything after my operation other than to let everything heal. When I went back for activation the doctor was very surprised that my pump was too high. It has been over a year and I still haven't decided what to do. Every time I try to activate the pump it goes even higher and sometimes I can barely reach it. I was advised to let eveything settle down and then decide what action to take.

sandflylarry
Posts: 9
Joined: Feb 2015

I asked the doctor while I was still in the hospital, where is the pump located?  He told me to not worry about it and he would show me when the swelling went down. He said that I could accidently activate the pump and to leave it alone. I really don't want it in the wrong position when it is time to activate.  Ease of use should be #1 priority after taking the step to have it done.

tpelle
Posts: 184
Joined: Aug 2003

My first AMS800 implanted in January 2013 worked beautifully for 17 months, then failed as a result of a pin sized hole in the balloon/reservoir.  On January 14, 2015 the entire system was removed and replaced  -- three incisions to remove the old system and three new incisions to place the new system components in different locations.  Yesterday, at two days short of six weeks the second surgeon activated the new system.  The pump on the first AMS800 was placed very low in the scrotum, was easy to find and to manipulate.  The second AMS800 pump was placed very high in the scrotum making it difficult to differentiate the pump and tubes from flesh and cords.  I was instructed both times to tug on the pump at least a couple times each day to prevent it from migrating into the body cavity.  I did that, but this time I was warry of pulling not only the pump but also the balloon.  Yesterday, the surgeon told me that she had left sufficient tubing that reasonable pulling on the pump would not affect the balloon placement which she installed under a muscle.   For the past 24 hours I have been tuggin harder on the pump each time I urinate and it is now easier to grasp by the entry/exit tubes.  Although I have had several incidents of spraying my hands, legs, the toilet and the floor, I am making progress doing a three hand job with only two hands!  The pump remains in a vertical position and the system is operating well at this point -- no leaks.  Since the activation I have dumpted the Depends and am now using only a liner. 

tpelle
Posts: 184
Joined: Aug 2003

jimco, see my general response below.  Yesterday when the surgeon saw that the pump was very high in the scrotum making it difficult to grab and pump, she suggested that if it's current location doesn't work out for me she can lower it.  It would require  minor surgery to be performed in the hospital operating room, but only as an outpatient.  I told her I would do my best to tug it down to a manageable position so that no further surgery would be required.  It seems to be lowering.  tpelle

jimco236
Posts: 10
Joined: Nov 2012

tpelle, thanks for the info.

Josephg
Posts: 158
Joined: Jan 2013

Tpelle,

 

If you can get the pump position to the point that you can consistently grab the entry/exit tubes on the top of the pump, you will be in great shape.

sandflylarry
Posts: 9
Joined: Feb 2015

I talked to the surgeon about the location of the pump. It seams to be in bottom of my scrotum behind and underneath my right testical.  He looked at it and said everthing is fine.  It has been two weeks since it was installed and I still have discomfort in my right testical. It seams like it is entangled in there and causing preasure.  I had the transverse method of installation entirely through the scrotum. I can feel the tubes runing up the right side, ut the pump is in the bottom.  Has anyone else had an issue simillar to mine?

tpelle
Posts: 184
Joined: Aug 2003

Larry, the pump on my first installation in 2013 was also at the bottom of the scrotum but was free of any entanglements.  At about the fourth week (not before), I was able to easily grasp it with my left hand and press the dimple below the button with my right thumb.  That was so much easier to manipulate than my current pump which is located high over the right testicle.  I am able to barely grasp this new pump by the short entrance/exit tubing.  For me the pump is upside down, so my right thumb is pressing on the "back" side of the pump with my forefinger on the dimple.  Not as effective.

Also, on both installations I still had scrotum pain at the time of activation at six weeks and was still taking hydrocodon.  On the first installation the pain finally subsided at about ten weeks after surgery.  I'm two days short of seven weeks from surgery this time and still have pain beginning mid-afternoon until bedtime unless I take hydrocodon.   During the morning hours after a night's sleep, the pain is minimal.  I hope this is of some help.  tpelle

 

 

 

sandflylarry
Posts: 9
Joined: Feb 2015

Thanks tpelle for your input. I comend you for putting up with all that you have been through.  There is no doute that I have made the right decision to have this done if you had it done twice.  I have been going through 5-6 pads a day since the RP and it was really getting in the way with my lifestyle.  I am 56 years old and still working.  I am a contractor and being in other people's houses and having to use their bathroom all the time to change pads is just bad.  Looking foward to my 6 week activation.  4 weeks to go.

 

Larry

tpelle
Posts: 184
Joined: Aug 2003

Larry, you will love life again once your AMS800 is activated and you have mastered the pump manipulation process.  On my first system there would be times when I would sit on an irregular surface and had some leakage.  So far with this new system there has been no leakage.  The surgeon told me that she used a smaller cuff this time.   tpelle

sandflylarry
Posts: 9
Joined: Feb 2015

l will keep updating my progress as the weeks go by.  

VascodaGama's picture
VascodaGama
Posts: 3012
Joined: Nov 2010

Best wishes for a smooth ride on the AMS800, free of nappies and peace of mind.

 

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