Hey everyone,
Since we're talking about decompression surgery, I figured I’d share my own nightmare experience with this brutal syndrome and the sketchy surgery performed by Prof. Smith. It might save someone else from the mess I'm in.
Look, don't treat this surgery as some "quick fix." Only consider it if your quality of life is literally at zero and you've actually exhausted everything else in this order:
1. Lifestyle changes
(Stop sitting so much—get a damn ergonomic cushion and a standing desk if you can)
2. Physical therapy
3. Medication
3. Nerve blocks
4. Patience. Just pure patience.
After dealing with every single devastating symptom of Neuron neuralgia (I saw about 10 specialists, had 3T pelvic and lumbar MRIs, EMGs, SSEPs, etc.) and reaching the point where I couldn't sit on a special cushion for even a few minutes without intense pain, I decided to go for bilateral transgluteal decompression with Dr. Smith. I was mostly motivated by a post from restlessbadger2 regarding her own procedure...
Fast forward six months post-op: things haven't just failed to improve—they're three times worse. On top of my old symptoms, I've developed new urinary issues and sharp pains in the scrotum area, specifically the bulbospongiosus muscle... not to mention all the original perineal pain and then some.
Post-surgery, Prof. Smith basically ghosted me. He straight-up denied that my new symptoms were linked to the surgery (his first follow-up lasted maybe two minutes), then tried to pawn me off on urologists or suggest "burning" the nerve as the next step—as if those are the only two options on the table for treating PN.
(I later found out from other experts that nerve ablation is super risky because when the nerve regrows, it can form a neuroma that hurts even more, not to mention the risk of incontinence)...
After Dr. Smith ignored my emails for ages while ignoring my new complaints (only mentioning them briefly in his notes), he finally gave me a reluctant, two-word reply admitting he performed the decompression in the Alcock's canal and sacrospinous ligament—something he conveniently left out of my discharge papers. That is incredibly unprofessional and vital info to hide.
My life is completely ruined now. I can't sit at all, and the pain is constant 24/7 despite being on the strongest meds available.
Beforehand, the doctor promised nothing could go wrong. He actually laughed when I was cautious and asked if there were risks. God, I was naive...
If you want to gamble like I did with a surgeon who, in my opinion, is massively overrated (he's probably fine at his specialty, but clearly lacks the specific training and patient experience needed for pudendal decompression)... that's on you. I'm not responsible for your choice.
I'm going to try to reclaim my life by seeking treatment in nearby Europe with Prof. Oscar Aszmann.
My advice:
Get a 3T pelvic MRI done at the Neuron clinic for about $600 and then go see Prof. Aszmann for an initial consultation, which is around 300 bucks. Do that before you jump into decompression or nerve burning with Dr. Smith.
I'm posting this because I took a disastrously wrong turn with my treatment, and I want to make sure nobody else follows my path.
Best,
Stay strong, PN warriors! Don't give up.
P.S.
The Pudendal Info forum and the Facebook group Pudendal Hope are actually great resources.
Since we're talking about decompression surgery, I figured I’d share my own nightmare experience with this brutal syndrome and the sketchy surgery performed by Prof. Smith. It might save someone else from the mess I'm in.
Look, don't treat this surgery as some "quick fix." Only consider it if your quality of life is literally at zero and you've actually exhausted everything else in this order:
1. Lifestyle changes
(Stop sitting so much—get a damn ergonomic cushion and a standing desk if you can)
2. Physical therapy
3. Medication
3. Nerve blocks
4. Patience. Just pure patience.
After dealing with every single devastating symptom of Neuron neuralgia (I saw about 10 specialists, had 3T pelvic and lumbar MRIs, EMGs, SSEPs, etc.) and reaching the point where I couldn't sit on a special cushion for even a few minutes without intense pain, I decided to go for bilateral transgluteal decompression with Dr. Smith. I was mostly motivated by a post from restlessbadger2 regarding her own procedure...
Fast forward six months post-op: things haven't just failed to improve—they're three times worse. On top of my old symptoms, I've developed new urinary issues and sharp pains in the scrotum area, specifically the bulbospongiosus muscle... not to mention all the original perineal pain and then some.
Post-surgery, Prof. Smith basically ghosted me. He straight-up denied that my new symptoms were linked to the surgery (his first follow-up lasted maybe two minutes), then tried to pawn me off on urologists or suggest "burning" the nerve as the next step—as if those are the only two options on the table for treating PN.
(I later found out from other experts that nerve ablation is super risky because when the nerve regrows, it can form a neuroma that hurts even more, not to mention the risk of incontinence)...
After Dr. Smith ignored my emails for ages while ignoring my new complaints (only mentioning them briefly in his notes), he finally gave me a reluctant, two-word reply admitting he performed the decompression in the Alcock's canal and sacrospinous ligament—something he conveniently left out of my discharge papers. That is incredibly unprofessional and vital info to hide.
My life is completely ruined now. I can't sit at all, and the pain is constant 24/7 despite being on the strongest meds available.
Beforehand, the doctor promised nothing could go wrong. He actually laughed when I was cautious and asked if there were risks. God, I was naive...
If you want to gamble like I did with a surgeon who, in my opinion, is massively overrated (he's probably fine at his specialty, but clearly lacks the specific training and patient experience needed for pudendal decompression)... that's on you. I'm not responsible for your choice.
I'm going to try to reclaim my life by seeking treatment in nearby Europe with Prof. Oscar Aszmann.
My advice:
Get a 3T pelvic MRI done at the Neuron clinic for about $600 and then go see Prof. Aszmann for an initial consultation, which is around 300 bucks. Do that before you jump into decompression or nerve burning with Dr. Smith.
I'm posting this because I took a disastrously wrong turn with my treatment, and I want to make sure nobody else follows my path.
Best,
Stay strong, PN warriors! Don't give up.
P.S.
The Pudendal Info forum and the Facebook group Pudendal Hope are actually great resources.