Possible PN and hoping for help!

[Meliora]

Jax, Dr. Potter did not read my MRI. I had her protocol sent to a local MRI center that had a 3 Tesla machine. So, maybe she would have found something. I have bladder spasms when the nerve is really irritated (lots of them lately, I had a right pudendal block that stirred things up, but helped pain for 2 weeks!) I also use nifedipine ointment for rectal spasms and that helps some. My tear is in the right hip, but my pain is bilateral. I am supposed to have a left pudendal block soon, I rescheduled because I wanted to see how long it would take the right side to kick back in. Now I am back to hurting on both sides.

I don't know what to do about the hip. I am afraid the hip surgery will cause further pudendal nerve damage from traction. I cannot do nothing though...as I no longer sit (ever) or drive, etc. Not exactly a great life when your a mom especially. If it were not for things going numb when sitting, I would probably get a nerve simulator/pain modulator and call it a day.

No one knows how anyone will do with any surgery, block, medication, PT they try.....very frustrating. It feels like one must simply jump in and see what happens.

Jax, what hip surgeon are you using?

[Meliora]

I recently had a pelvic embolization for pelvic congestion syndrome. My doctor embolized both sides and said my veins extremely abnormal. So far pain continues, even though I was told it could take a while.

I am still ready to have PN surgery. I want to drive, sit, etc.!

Can anyone share their experience/knowledge with Dr. Aszmann/Dr. Possover? I have not seen anyone post about having surgery with Possover, but any information would be helpful. Thanks!

[helenlegs 11]

Sorry Meliora, can't help with the Dr question but I do hope that the pain calms down with the embolisation. Really hope it works.
Take care
Helen

[Violet M]

Meliora, I can't remember any of Possover's patients ever posting on this forum. If you speak French you could try the French forum. Several of Dr. Aszmann's patients posted unsuccessful results here, unfortunately -- two I can remember are Ali and A's Mommy.

Violet

[Meliora]

Thank you Helen! It seems very unlikely the pain will get better from my embolization. My pain is 100% unchanged so far. I am going to plan on surgery at this point (very nervous). I just don't know what else to do. I have had four nerve blocks, pelvic embolization, medication and pain persists.

Violet, I want to avoid TG for now as I "think" it seems a bit more invasive than Aszmann and Possover approach. I have other health issues I have to consider in regards to surgery. I actually just read on the German forum that two people used Possover (hubby showed me traslate , so I could read them). Not sure how either are currently. One person said he had 60% success with Aszmann at 10 weeks post op on the German forum, if I translated correctly. I have read some that had no success though as you mention. With Possover I may need his neurostimulator as well. I guess that is a better device for pain than what is offered in the states?

[flyer28]

Violet, I guess that A´mommy recorded some improvement after dr. Aszmann´s surgery. Not cured but improved I guess. Ali did not have benefit, the others did have mixed results.

[Violet M]

Several people have posted early success with Aszmann/dorsal nerve surgery but unfortunately a return of the pain several months later.

Violet

[Meliora]

Looks like Aszmann is the only doctor that can help with trapped perineal branches? It seems everyone who has gone to him thinks he is a good surgeon/doctor in general. I just wish there were more success rates, as I know those who have had surgery wish there was as well.

I found out one Possover patient is still in pain after surgery, almost been a year. I know he helps with sacral roots, but I thought he could also do more than that. I am going to call his office and double check. I wish he answered email, but no luck. His secretary will, but not the same.

Are those of us with distal entrapment just harder to treat?

[helenlegs 11]

Are those of us with distal entrapment just harder to treat?

Not able to answer that with any medical confidence Meliora Although my thoughts would be that the more 'traditional' (yet still under-recognised) areas of entrapment have a longer track record for treatment. Then as many report, recovery can take such a long time. . . .I'm just so glad that some surgeons do recognise that there can be problems with nerves at almost any point along the route, as you too have discovered.
That's my point I guess, what more can you do than you are already doing within the constraints of this continuing pelvic medical puzzle for which we get too few answers.
It's unfortunate and so frustrating that you are having to chase around to get answers, as if things aren't difficult enough but you are definitely approaching this with intelligence, researching everything; what more could be asked of you?
Have you tried PMing A'sMommy? maybe she can give you some tips re contact.
Helen

[gorenje]

Several people have posted early success with Aszmann/dorsal nerve surgery but unfortunately a return of the pain several months later.

Violet

Could this be a due to the healing process? I read the following regarding post-op from PNE: "Many people experience shock-like pain as the nerve is regenerating, especially around the 3 to 4 month point. Often the recovery takes as long as a year and many patients have reported improvements as late as 2-3 years after surgery." It would be interesting to hear how the patients of Dr. Aszmann are doing 1 to 3 years after the operation.