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7 months on from surgery

User
Posted 12 Jun 2023 at 07:50

Hi Chris

I had a Retzius sparing robotic assisted radical prostatectomy + neuroSAFE back in Nov 2019 with probably the highest volume surgeon in the UK. The professor whocannotbenamedhere works out of Guys London Bridge privately. I found him top notch and have recommended him to a number of chaps in the same situation who have also had good outcomes. The UCLH guys are also very good. Slightly less volumes as the prof appears to be a pioneer in his sphere and back in the 2000s was leading laproscopic urological surgery and teaching new techniques across the EU. Key points to the surgery…going to an NHS teaching hospital appears wise as they have better budgets and this top end kit. At guys they had the latest and greatest Da Vinci robots and spares on site plus top end MRIs etc And I’m always mindful it’s not a bad thing being in a proper hospital should the operation go south and there os a crash team on-site. Retzius sparing data shows quicker recovery times post surgery as less messing with critical nerves that control continence below the bladder. They key point of me and a few guys that also had same surgery is the use of neurosafe. Neurosafe is currently being evaluated by NICE and will probably be widely available after this through the NHS. I’m amazed how many places still don’t use it as gives a new level of visibility during surgery. Effectively they have a pathologist on standby during the op who does a real-time frozen section provisional histology report on your prostate while you are open. This means if there are any suspect margins, as was the case for me, the surgeon can take additional tissue for reassurance. From my perspective not using it is effectively flying blind so can only be a good thing. With my case not using it might have meant too little or too much tissue around the nerve bundles etc could have been taken. Please feel free to should be on DM (inbox email on here) for more info. Cheers Simon

 

User
Posted 12 Jun 2023 at 13:31

Hi Jayney,

Thanks for asking. Things went pretty much as expected with ENT. He confirmed that a very small number of people have this issue with PDE5 inhibitors. The mechanism by which they can damage hearing is not understood, though there is some speculation about it. It's a rare side effect but unfortunately I have it. He said that it's really now a cost/benefit calculation for me. Taking more of these drugs definitely could cause more permanent hearing loss and tinnitus. It could also be that a low enough dose of the right drug will be tolerable. The problem is, you don't know what the effect will be until you try, and the effects are not reversible. So, it's a bit of a bind. The tinnitus is awful and I don't want any more. On the other hand, since I've stopped taking the drugs I can definitely notice some effects (e.g. fewer, less strong nocturnal erections, etc). 

For now, I am staying off them. The andrologist wanted me to start up invicorp again, and I guess I will do that. It might also be that I can get by without anything for a while. I do have some function without any kind of medication. Oddly, from the start the response has been always and only to physical stimulation, with arousal being neither here nor there. So it seems like the nerves connecting to the mental response in the brain are not functioning, while a different set of nerves is still working quite well. Anyway, I'll see how it goes and hope for further recovery. I can't really see injections being a longterm solution for me, and while I know it is an excellent option for some, I'm pretty sure that I will never want an implant, so definitely gutted about the pills. The andrologist still seems quite optimistic about the possibility of recovery, so I'm trying to keep that in mind.

 
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