A's Mommy's MRI with Dr. Potter

[Violet M]

One reasons varices and pelvic congestion are not considered to be a cause of pudendal neuralgia is that soooo many people have varices and pelvic congestion who do not have pudendal neuralgia. So I wonder if possibly a blood vessel can be up against a nerve but not cause irritation unless the nerve is sick or damaged from some other cause?

[chuck]

Hi guys,

Violet, Celeste, et al. It's great to reconnect with y'all. It has been a while. I would like to say that I can report that all is well with Callie, but if you have been on tipna and read her most recent posts, you will already know that she is far from being cured, and we are again searching for answers.

A's Mom--thanks for posting all this fascinating information. We are especially interested in pursuing the 3T MRI in NYC. There is a pain management group that also works at the same hospital (Hospital for Special Surgery). I wonder if anyone knows anything about them...

As for the question of pelvic varices causing PNE symptoms, this is something that has interested me for a long time. During Callie's pregnancies, she had the most God-Awful varicose veins (in her legs) that any of her doctors had ever seen! They ended up thrombosed; she had to be on daily heparin therapy, etc, etc. After delivery of our last child, the veins becaome much improved, but she eventually had sclerotherapy done to shrink the last ones away.

I only mention this because knowing that she had a propensity for varices always caused me to wonder if pelvic varices were somehow involved in her PNE symptoms. It makes sense to say that the varices are so "soft" that they couldn't cause nerve compression, but when you remember that nerves often travel alongside blood vessels, and that they often travel in enclosed areas (like Alcock's canal), you begin to wonder if a dilated vein running next to a nerve, in a confined space COULD cause a problem... (Geez, I'm starting to sound like "Ava"!!!!)

A's Mom, what did Dr Hibner say about your varices> Did he address them in any way during surgery?

Wishing you all the best. Have a pain-free day!

Chuck

[Celeste]

You had to mention "Ava"!

That is awful about the thrombosed veins during pregnancy; however, nobody here who has had them sclerosed has reported any relief from it from what's been reported. None of the PN doctors (for what it's worth) think they could have anything to do with the pain. I can see why you would think it's at least a partial answer, though.

We had one lady here whose scan showed Tarlov cysts. She had a completely arduous back surgery with the one doctor in the country who treats them, and got tremendous relief from her PN-like pain symptoms. But she hadn't had a hyster. It's all so confounding, I know. I'm just throwing it out there since we're talking about non-traditional mechanisms of the pain. Others will be told they have Tarlov's and not get relief from the surgery. No way of knowing if some of them needed PN treatment.

I am so sorry that you've had to find your way back. I hope the B&O can do something; I thought they had worked at least somewhat in the past and then went off the market, so hopefully if you can get a new supply they'll still work.

C.

[Violet M]

Hey Chuck,

For all we know, Ava may be lurking here so be careful what you say.

It's good to see you but I wish it was only to hear that Callie was cured. I hope the 3T with Dr. Potter will give you some answers.

Not sure what to say about varicose veins. My gyn mentioned that she had seen women with very large ones who had no pain at all and did not think they could possibly be a cause of PN pain -- but who knows, maybe theirs just weren't in the wrong place right against the nerve. But it seems like Dr. Hibner have dealt with this during surgery wouldn't he?

Remind me again -- what triggered Callie's pain in the first place? Was there a surgery or incident or did it just happen out of the blue?

[chuck]

Hi Violet-

Callie's pain started almost immediately after she underwent an abdominal hysterectomy for fibroids. It was Dec 28, 2004. Since that time she has tried literally eveything: PT, injections, Botox, acupuncture, Dr Wise's protocol, voodoo, "magic power crystals", etc, etc. We spent much of 2005--2007 traveling the nation looking for answers. She finally underwent surgery with Dr Hibner in June, 2007. Since then it has been an up and down journey. She is still on medication, and overall, has been much improved. Unfortunetaly, things have been a bit worse lately (possibly due to increased activity levels and the stress associated with having a high school senior on the premises ) We are getting ready to be "empty-nesters" and thought that now might be a good time to once again travel the nation (fun!) seeking medical help for this wretched condition. The MRI sounds interesting, but unless one is committed to having MORE surgery, I don't know how useful it would be...

Have a great day!

Chuck

[AliPasha1]

Hi Chuck,
You might find something that wasn't addressed at all in the 3 Tesla MRI.It is also possible the PN got re-entrapped in scar tissue or the pain could be coming from the other side.

I would highly recommend Dr. Potter.We are finding quite a few things that were missing from the PNE surgery.

Could you also highlight where did Dr. Hibner find the entrapment and what symptoms actually improved and which didn't.

Thank You,
Ali

[chuck]

Ali-

I will have to go back and find Dr Hibner's notes. I recall that he DID find entrapment of the PN, and I THINK it was at Alcock's canal, but I really don't recall the details. Callie's pain has always been on the right side, and that is where her pain remains. Could the nerve be "re-entrapped"? Yes, I suppose it could be, but then again, Callie NEVER experienced a "cure" after surgery. In fact, at first, she was in even MORE pain after surgery than before. Over many months, and with aggressive pain management (including a variety of opioids--long-acting morphine, short-acting, etc, etc), her pain slowly eased. She has NEVER been pain-free, however, and has continued to rely on medication in order to live a relatively normal life. Was the decrease in her pain due to the surgery? I honestly don't know. I Do know that she has no regrests about having the operation.


We are certainly considering a trip to NYC to see Dr Potter, but also to see the pain management docs who work there.

Best,

Chuck

[A's Mommy]

Chuck,

Wrote you a PM. Hope it answers some of your questions.

AM

[AliPasha1]

Hi Chuck,
What I have heard that people mostly entrapped in the Alcock's Canal usually heal and get cured.It is quite possible that her dorsal nerve in the Pubic symphysis might be entrapped as well.Was her nerve flattened in the Alcock's Canal or the myelin sheath damaged.

I was also entrapped in the Alcock's Canal,and I have seen some improvement in my symptoms so far after a year of surgery with Dr. Bautrant and I am on no major medications other than 75 mg lyrica and 2 mg Clonezepam daily.Sometimes,I take rectal suppositories when I have rectal burning but that is very seldom.Although,I wasn't on any medication before the surgery.

But I can't sit on a hard surface at all and all due to Dr. Quesada's PN block which he gave me in 2007.Otherwie,life would have been 80% better.



Regards,
Ali

PS
That's what worries me about my redo surgery with Dr. Hibner that if I become worse then what will happen.

[Violet M]

Chuck, have you read any of Dr. Marc Possover's publications? He has a different take on post-hysterectomy pain than some of the other PN docs.