Hi, just reaching out for anyone else in Australia? I’m so frustrated I would fly anywhere in the country for help… thanks
@jimbo, Russell72 and Macca are both from Aus that i know of there may be others. I have spoken to both guys. Russell72 had a reversal in Aus but said he is not fixed fully.
So do we have any others from Australia? Or are we the only four special ones suffering?
I have a mate here locally having issues. Different to mine, from what he explains I think it’s granuloma. Small painful lumps appearing. Hes a bit too macho & not really financial enough to seek help & is in Bali with a shopping list of drugs to self medicate. That’s another issue, forking out around $200 a time to see each specialist. I’m st least $4k into this now.
Its hard for us that dont live in a capital city all the GP’s and urologist are a waste of money in Cairns QLD. So my closest is Brisbane 2000km away. So yes the money adds up very quickly. The thing is medicine just hides the issue thats not fixing anything. And a reversal is $6000 to $10000 depending circumstances.
Im in Adelaide.
4 years now with PVPS.
Had it changed from closed to open.
Had a reversal 1 year ago.
Mild improvement post reversal but still quite bad.
Is there anyone in the world that specialises in this?
sorry that you’re in this situation. I’m around 4 years in too.
Among others, I’ve personally dealt with Dr Trenton Barrett in Perth, a Urologist. He did denervation surgery on the left side with me, partial relief.
More recently I’ve seen Dr Mondello, a pain specialist in Perth and had pulsed radio frequency nerve ablation. That’s given me some relief on the left side.
There’s Dr Garvey in Sydney, he’s a proponent of open ended and reversal as treatment, but you’ve already gone down that road.
There’s Dr Woollcott on the east coast, he’s a proponent for reversing, but you’ve already tried that.
You can email me direct it it’s more convenient.
Hey Jim, did your pulsed radio frequency nerve ablation look anything like this procedure?
It’s available at a clinic near me in Oklahoma. Did they burn the nerve near the spinal column? How much pain relief did you get on a scale of 0% to 100%? How long has it been since the procedure?
I’m not sure it’s the same.
My doctor explained that the nerves weren’t damaged under his procedure, more disrupted or reset… he told me I could get anywhere from no relief to a good result, for anywhere up to 9 months or anywhere within that scope.
Mine was not in the spine area. He did the hip to target the inguinal nerve and near the base of the penis to target the genito femoral nerve. He did this on both sides. He did it under xray guidance, and I was under anaesthetic.
On the left I believe I have got about a 30% reduction in pain, and 30% reduction in the frequency of it flaring up & a 30% reduction in duration of the flare ups. It’s still always present, but it like the volume has been turned down, I hope that makes sense. On the left I believe I have either a neuroma or nerve damage, due to the nature of the pain and the way it radiates into my hip and leg.
On the right I got no relief. On this side I believe the pain is congestion related.
This was just over 2 weeks ago & my follow up is next week. It’s by far the best result I’ve had from nerve block type treatments.
Happy to answer any questions.
Sorry for typo’s, I’m on my phone, not a desktop.
Jim, did you have any nerve blocks of local anesthetic first as a test? For example, with denervation they first do a cord block.
I once had a shot of something via my hip under x-ray guidance to target IH, II, and GF nerves; but I wasn’t under anasthetic. I got no relief from it. Your procedure sounds almost like this one.
Hi, yes I had various nerve blocks, my pain has always varied and fluctuated radically on the left, so nerve blocks never gave a clear result. I’ve never had any relief on the right from nerve block, that pain is consistent and always present.
The next treatment for me is a week long ketamine infusion as suggested by my pain specialist.