I previously posted regarding this topic and here report back on my own experience with the surgery, performed by the two key authors of the 2019 paper in European Urology: doi.org/10.1016/j.eururo.20... who offer this procedure at: cucare.com.au/sural-nerve-g.... Despite what the site says, they are now taking patients who have had radiation and ADT, providing radiation damage (assessed by ultrasound and, soon, MRI) isn't too severe. I've had eSRT and ADT but the radiation damage was minimal. My current PSA is undetectable and although PCa may recur, requiring further ADT, I figure this is a chance worth taking.
The surgery involves harvesting the sural nerves from both calves and grafting them in to bypass the original nerve bundles that activate the corpus cavernosa. The femoral nerves on each leg are "hooked up" through slits in the groin and the sural nerves stitched to them and threaded under the skin to the base of the penis, where they are retrieved through small holes on either side, inserted under the skin of the penis and stiched to the corpus cavernosa. The femoral nerves sprout after a month, take about six months to grow down the channels of the graft and then grow into the corpus cavernosa. The success rate is +70%, measured at 9 - 12 months post-surgery.
My first hint that this was a bit more intense than expected came when I asked how long post surgery before I could mow the lawn, only to be told:
- this is major surgery
- you'll feel like a truck hit you
- no driving for two weeks, and just keep taking it easy after that
I've had very low platelets for 30+ years (ITP) but anticipated I could get my count up to the required100+ by taking prednisalone, which had worked for my RRP in 2017. This didn't work so surgery was postponed and I ended up with a five hour infusion of IVIg. A week later I had the surgery, which runs for several hours and involves an overnight stay in hospital.
Immediately post-surgery I felt fine, with only minor aches in the tops of both thighs, but over a few days it became clear that the incisions in the ankles were the real problem - the skin there is thick and heals slowly. I had no problem walking, though it was kind of jerky, and if I tried stairs, my legs just seemed out of control. One of the holes at the base of the penis didn't heal ended being re-stitched after ten days, but overall, it hasn't been too bad. March is the best time of the year in Melbourne so it's been a real downer spending so much time sitting around - but again, no big deal. I have numb patches on the outsides of both heels - these may reduce in size over time, but won't dissappear.
I was ca. patient 100 and there is a queue overseas waiting for Australia's covid-related entry restrictions to be lifted. Total cost was around A$20,000 (US$15,000) and insurance covered ca. A$8,000 of this (hospital accomodation, theatre fees etc). If coming from overseas, you would need to stay in Melbourne for at least two weeks (more if you had to come here to have suitability confirmed) and be prepared to extend if everything didn't go smoothely.
We should find out if it has worked some time around September, and I'll post again then.
Stuart