Health Organization for Pudendal Education

Hi all

Short history for those who don't know/remember me: hysterectomy 6/17/08 woke in screaming agony, right side TIR, ilioinguinal neurectomy & vestibulectomy w/Dr. Conway 5/09, left side TIR w/Conway 2/10. No relief

I saw Dr. Dellon in April and he recommends for me bilateral ilioinguinal, bilateral iliohypogastric, left genitofemoral, left pudendal surgeries. My right side is much less symptomatic, so he suggests holding off on that. My MRI w/Dr. Potter shows my dorsal nerve is "encased" in scar tissue. Since I had no scans prior to my pain, it cannot be determined if this "encasement" is causing any issues or if it has been there for a long time. Dr. Dellon does not accept insurance, so off to fight my insurance company I went. In the meantime, Dr. Dellon contacted me and recommended I meet with Dr. Hashemi who is a participating provider with my insurance and is very capable in doing all but the pudendal piece. I met with Dr. Hashemi yesterday and I was really, really, impressed. Between Dr. Dellon and Dr. Hashemi I have had the most thorough physical examinations and the most complete discussions of history/symptoms, etc. than with all the other physicians combined. So back to the insurance company to see if they would be willing to compromise w/Dr. Hashemi doing all but the pudendal and Dr. Dellon scrubbing in and they reimbursing me for his cost at an in-network rate.

So the plan is to do the surgeries late August (time to fight insurance, time to quit smoking - I know, horrible habit that I restarted after all this crap - and I have some family things to attend to). Prediction is that I should be largely recovered in 3 months; beginning warm water walking two weeks post surgery. Possibility I would still need to address the right pudendal and the dorsal nerve if any symptoms persist.

I have no earthly idea if this is going to work or not, but I have to keep trying. I have to exhaust all my options and giving up is not one of them! I cannot recommend that anyone else do this and I know that there are those who aren't happy about Dr. Dellon not accepting insurance. I don't want to rekindle a debate regarding that issue. I just wanted to update as to where I am headed next. I think it is important that we share information as we can't all get to everyone who might possibly help. So I promise to keep you posted on my experience with this doctor

Here I go again, lol,
Grace

Glad to hear things are progressing for surgery even though you had to change the date. It is good to hear the "fight" in your note to get better. You are in the best of hands. I have sent a prayer your way for your insurance fight, the hands of the surgeons, and your recovery.

Grace,
Thanks for posting. You have traveled a rough road and I admire your courage and fighting spirit. According to Dr. Potter, I also have nerve issues in addition to the pudendal (bilateral ilioinguinal and rt genitofemoral) that are not addressed by Dr. Hibner. Thus, I am quite interested to hear about Dr. Dellon and other possibilities such as Dr. Hashemi. Wishing you every success.

All My Best,

Don

Thanks

It's wonderful that after all this time you have found someone who is really taking your issues on board. Wishing you every success Grace, it's so deserved and overdue.
take care,
Helen

Graceunderfire, if it's any consolation, my Blue Cross just sent me a reimbursement check for $7,700 for my surgery in May with Dr Dellon.

Well, things definitely do change

I ended up not ever getting approval from the insurance company (that appeal is STILL going on if you can believe it) for Dr. Dellon. So I had ilioinguinal, iliohypogastric and genitofemoral surgeries (left side August, right side Sept 30th) with Dr. Hashemi. It is still very early, but so far, so good. I really, really like Dr. Hashemi and wish he did pudendal nerves surgeries!

Yesterday I went to see Dr. Echenberg. He spent a great deal of time w/me. He usually sees patients at the start of their journeys not so far into them, but he agreed with the decisions I had made so far. I had the most thorough examination I've had yet. It seems my left pudendal especially is still a major issue and he feels that I would benefit from trigger point injections and some pt w/the piriformis.

So I will be working on the pt and water therapy and trigger point injections for the rest of this year and will be having TG surgery with Dr. Conway in January. I am comfortable that I did not go through with having surgery with Dr. Hibner. I just could get absolutely no communication with him and that really scared me. The only 2 times they called were when I did not show up for surgery. So, obviously, they paid no attention to my messages cancelling the surgeries either! What stinks most about that is there were 2 slots that people could have used.

Anyway . . . that is the latest with me. Glad to see some folks are getting better - sad to see many that are not. But never, ever, can we give up!!

Blessings,
Grace

I am so glad to see your post. I have been thinking about you and wondering how you were doing.

I am so glad to hear that these surgeries you just had seem to be helping. What a relief! Sounds like you also have a great treatment plan in place.

Prayers and hugs sent your way!

Hi Grace,

You are one of those people who just won't give up aren't you. You are truly amazing! I sure hope this latest surgery will provide some relief and wish you the best on your upcoming surgery in January. Thanks for posting your update.

Hugs,

Violet