RE: HOLLIS/Testing for Pudendal Neuropathy

[Guest guest]

nne, You sound as if you're doing extremely well, even with the inevitable ups and downs which go with the territory. Having the surgery was clearly the right decision for you. I'm so impressed with how you're handling the waiting game: even though you're (of course) impatient to have those nerves heal, it's clear to me your head's in the right place for biding your time. And having been able to have a sitting lunch out and about -- how great! Although i've never had surgery which disturbed nerves and tissue to the extent that your procedure did, i do have a little idea about how much time nerves can take to calm down. Several years ago i had a mystery lymph lump (my name for it. . .) excised from the back of my head; and when one of the nerves got accidentally severed -- yikes!! It took a long, long time for the area to stop being numb and hypersensitive to touch and pressure and for new nerves to generate, but it eventually happened. May your recovery continue to go smoothly and well! Hollis > Hi Hollis, I am doing very well – thanks for asking. I stayed off the groups for awhile to give myself a chance to heal. This is a long recovery period – at least two years and I have only had six months of recovery. I have had some good months and some very bad months, and I seem to be on the upward swing now. I went out shopping on Saturday and even ate dinner out (on my cushion). But this is remarkable as I am still in bed (daybed in front of TV) most of every day. I also take a lot of medication to see me through the day. Unfortunately my vestibulectomy did not take and the nerve endings grew back after three months. I still would have a vestibulectomy again in a heartbeat, as I do believe they are wonderful and heal most people. And the recovery is so easy – virtually pain free. There is a 20 percent failure rate, and I was one of them. I did have three months of wonderful complete vaginal and perineum pain free. I passed the q-tip test with flying colors – and like I said – I was completely pain free with and without touch. Now it is all back again, but Dr. Conway feels it will eventually be pain free again as my pudendal nerves heal. The surgery was completely successful – the nerve was compressed on both sides and Dr. Conway was able to free the nerves. Following surgery at my first and second month checkup, Dr. Conway was able to do an internal exam that was completely pain free. He pressed on the PN, and I didn’t feel any pain. But the internal nerves are inflamed from being disturbed and the nerves in the butt and the perineum are inflamed from being disturbed also. They use retractors during surgery which pull all the butt muscles, bowels, vagina out of place. That is why I am getting the impar blocks – these blocks calm all the nerve endings in the pelvis and my PM doctor (Dr. Quesada) thinks that this will help. That is where most of my pain is located – in the butt. It feels like I was slammed with a 2 x 4. I started PT today and my therapist (Raquel Perlis) did not find any trigger points or muscle spasms. She thought all my muscles were in good shape considering I have been in bed the last six months. She had been in touch with for directions on post pudendal surgery PT. It has only been the last several weeks that I have started to move around. I got a good dose of an hour’s worth of skin rolling which really felt good, and will start internal work in about a month. Raquel said I was her only client that never screamed or cried during the skin rolling. For some reason I find it very soothing. So I have a long way still to go before I am pain free, but I am making baby steps. And I am so glad I had the surgery done. It was the very best decision I could have made. Now everything would be perfect if the nerves would just hurry up and heal so I could be pain free. I have a wonderful team of doctors and they will do everything possible to help me. If these blocks don’t help, then I am going to try Botox. Dr. Conway keeps telling me the story of his patient who kept telling him that it was the worse decision she ever made to have the surgery. She was a bad case, as bad as I am, and she kept telling Dr. Conway this over and over. At the end of two years, she called him up and told him it was the best decision she ever made as she was completely pain free and healed! He keeps telling me that this will be me – it just takes that long for the nerves to heal. nne From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of hgz Sent: Monday, February 11, 2008 2:58 PM To: VulvarDisorders Subject: RE: /Testing for Pudendal Neuropathy nne, I have been thinking about you and wondering how you were doing post-surgery, so it's nice to see you back on the group. How are things going in your recovery? Are you where you expected to be at this point? You mentioned having some blocks done. Was this part of your " plan " -- or something that is a response to new developments? Hope you're doing well. You deserve it after all you've been through! Hollis > Carolyn, I have PNE, LS, Vulvodynia and Vestibulitis. I am almost six months post pudendal decompression surgery. nne From: VulvarDisorders < mailto:VulvarDisorders > [mailto:VulvarDisorders ] < mailto:[mailto:VulvarDisorders ]> On Behalf Of Carolyn52192@... Sent: Sunday, February 10, 2008 11:09 PM To: VulvarDisorders < mailto:VulvarDisorders > Subject: Re: /Testing for Pudendal Neuropathy nne, What is your diagnosis C _____ Who's never won? Biggest < http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp0030000 < http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp0030000> 0002548> Grammy Award surprises of all time on AOL Music.