Health Organization for Pudendal Education

HerMajesty wrote:Hi Faith,
have you considered Dr. Conway? Personally If I needed decompression surgery I would probably go to him because of the lack of waiting time. Karyn did so well with him, I really do think the new surgical technique he is using makes him a viable option. I assume you waited several months to see Dr. Hibner and now a year to surgery - that just isn't right
Anyway I'm sorry about your job and that you are not feeling well. I quit working too and now that I am not so overwhelmed, I am teaching Sunday school to the tweens and teens, and am helping a friend start a new neighborhood ladies' Bible study - There is a mission field right here in the USA. I am finding that no matter how bad I feel before and after, when I am actually out there teaching the Word I forget all about the PN. I can also speak articulately when teaching although if I try to just have a regular conversation before or after, I can barely string a sentence together because of the meds. It's really called my attention to how God can equip us to do His work even when it is definitely beyond our own strength. I hope the decision not to work leaves you with lots of time to lounge around in your PJ's and enjoy your daughter, but also gives you some freedom to do the Lord's work.

HM, I have considered Conway. I actually did a phone consult with him back almost a year ago, but didn't feel like he was the right surgeon for me because he was only doing the TIR at the time. I need to be educated a little more on his TG technique though. Does he sever the ST ligament? That's my issue. I know there is debate about whether the ST ligament is necessary for pelvic stability, but for me with known SI stability issues, I don't feel comfortable severing the ligament without repairing it.

Thanks for your encouragement HM. I am really excited about not working. Am really enjoying blogging and hoping to do some more writing in the future. I am also hoping to start a ministry for those with chronic illness in my church. I believe the LORD uses all things, even PN, for good!

[quote="Celeste] Hang in there, Faith. You've come up against an unfortunate reality about having surgery with Dr. Hibner--it can take a commitment of years to get your treatment completed, especially if you require bilateral surgery since he only does one side at a time. That's a long time to wait. There's also a risk for some that they might lose their insurance before they can complete treatment. I learned that ob-gyn's are now coming out with guidelines to give to newly pregnant patients about what to expect if they lose their insurance due to unforeseen reasons during a pregnancy--it's become that common in these economic times that now patients are being warned up front to learn their options.

I hope you will look at all of your options and that the right path for you will be clear.[/quote]

Good point Celeste. I do think Hibner's wait time is ridiculous, but being in the medical field I can understand it as well. I hope to get the final word back from Hibner in the next week as to what he wants me to do from here. I am thinking through a lot of options right now. All I know is that botox was NOT for me. A lot of the symptoms that seemed to be controlled some are raging back...constant burning vulva, rectum, inability to sit at all hardly. I guess it was worth a try though because if it had helped a lot I would be extremely grateful.

Hi Faith,
Dr Conway does not sever the ST ligaments; I dug up the old locked thread about ligaments because I knew Karyn had posted something about his approach, and here is the quote from Karyn about it:
"I wanted to share something I learned yesterday about Dr. Antolaks & Dr. Conways TG approach in regards to the ST ligaments. They make a verticle, center slice to gain access. Dr. Conway informed me that by the time they're ready to sew you back up, the ligaments are already rejoining themselves. For extra insurance, they do stitch the incision, using dissolvable stitches."
She might have learned even more about it since that time; if she doesn't see this you could alway PM her. In contrast last I heard, Dr. Hibner was severing the S-T ligament during surgery and then repairing it with a cadaver graft - not sure if he has changed his approach as it's been several months since I last heard that.

Faith wrote:HM, I have considered Conway. I actually did a phone consult with him back almost a year ago, but didn't feel like he was the right surgeon for me because he was only doing the TIR at the time. I need to be educated a little more on his TG technique though. Does he sever the ST ligament? That's my issue. I know there is debate about whether the ST ligament is necessary for pelvic stability, but for me with known SI stability issues, I don't feel comfortable severing the ligament without repairing it.

Hi Faith,
HM is correct. Dr. Conway does NOT sever the ST ligaments. He makes an incision to gain access to the nerve and then closes it back up again. From what I understand, Dr. Hibner has started doing this, too, but on a case by case basis. In other words, he'll either sever and repair with the cadaver tissue or incise and close up, depending on the case.
I was also not comfortable with the TIR approach; hence my trip to Oklahoma City last January ... I'm very pleased with my experience with Dr. Conway. I do believe he's a very talented surgeon. I don't regret having the bilateral surgery for one single second. My only regret is that I didn't have it sooner, instead of wasting so much time, money and additional pain trying to avoid the one and only thing that would give me a chance.

Faith wrote: I am really excited about not working.

I'm really excited for you, too! I hope having this time allows you to cut your pain level down a notch and catch your breath!

I just wanted to post more of my botox experience since it has been 7.5 weeks since the injections (which were only done on my left side). I did 5 PT sessions post botox as directed by Loretta, Dr. Hibner's PT, but after every PT session I was in more pain than I was before so I have stopped for now. I do not know if botox has made me permanently worse, but almost 2 months is sure a long time to be in a "flare". I am hopeful that as the botox wears off in another 1-2 months the new pain I have experienced will get better.

In the last couple of weeks I have had a lot of pain around my "sit bones" (left greater than right). If I try to sit even for a few minutes on a cushion I have burning into my adductor and hamstring muscles. I have worried that perhaps I do not have PNE but that I also have another nerve entrapment such as the inferior cluneal nerve, but I think my new pain is likely from new spasms that took over once the botox began "working". It is normal once the muscles that have been compenstating for so long "relax" from the botox the other surrounding muscles step in to "take up the slack". In my case, my pelvic dysfunction is complex (like most of ours) so there are many muscle compensations taking place. When I spoke with Dr. Hibner about 4 weeks post botox he said they have never seen the muscles injected be more spasmed than before and while I felt like my levator ani and obturator internus muscles might be more spasmed I do think they have released some, but now the other muscles surrounding hurt so my overall pain is no better, in fact it seems worse because I cannot sit at all.

Would love other opinions on this and hopefully sharing my experience will helps others.

Hi Faith,
Thanks so much for posting on your Botox experience. It certainly reinforces my previous reservations about having these injections done. One question I would like to ask Dr. Hibner is how many patients have been cured by them and not proceeded into surgery ? Also, would evidence of scarring on the MRI influence his decision to recommend them ?

Best Wishes,

Don

Faith, regarding Dr. Hibner and the ST ligament. When he did my surgery he made a "z" incision in the ST ligament and after the decompression sewed the ligament back together. No cadaver grant was needed. My surgery was in May 2011 and I think I was one of the first patients he did the new ST incision on and was hoping he would be able to do that on most of his patients so he wouldn't need to use cadaver tissue but would take it case by case.

Oh, Faith...I have a feeling that your post-Botox pain will for sure be better in 1-2 months when it wears off. I just have a feeling about it. That will be just in time for you to decide whether to go forward with the surgery. I'm so sorry you suffered such a flare.

cari

Faith,

My post Botox sx are just like yours. Increased sacral pain, "cluneal" or cutaneous burning in the buttocks ---- I had my injex done on 6/27/11 and obviously they didn't relieve my pain so I am with you. I don't think I will ever get Botox again. Just a personal opinion for myself --- I am happy for the people it has worked for, but I have had it 3 times (first time, L side only, second time R side only, third time both sides) and never got any relief. I think I am still dealing with a partial nerve entrapment since I have that "difficult spot" to get to -- i.e. the whole of the Alcock's canal and possibly dorsal/perineal branches. I started ruminating over the possible cluneal nerve thing myself, but the longer I think about it, I really think it's just the Botox. Can't wait till it wears off.

A's Mommy

I wanted to let everyone know I have decided not to have my left TG decompression with Hibner in January like I had planned. I just feel like I need to try a few more conservative/diagnostic procedures before having surgery. Everything I have tried thus far to treat my PN has made me worse and while I know it is possible surgery would make me better, I think it is unlikely as I have other issues (namely SIJD and central sensitization/CRPS). I postponed the surgery until July 2012 and plan in the coming months to see Vicki Sims, SIJD expert PT in Gainesville, GA, get a CT-guided pudendal block to make sure this really is the pudendal nerve that is causing my pain, and get a Potter MRI. If I can't get any relief by July and everything still points to PNE I will likely have surgery or possibly go with a spinal cord stimulator (which I've already been offered but turned down). I was very excited about having Ketamine treatment post-op in Phoenix and would like to try it pre-op, but have not had any luck yet finding a doctor who administers it anywhere remotely close to where I live. I hope to find a better pain management doctor in the coming months as well.

My pain is bad and has continued to make me more debilitated since my Botox injections in August, but I don't want to rush into a surgery that could make me much worse. It's just not worth it to me as I have a 2 year old daughter and husband I want to be able to live life with at least some. I don't plan to spend a lot of time on the forum in the coming months as the more time I spend on HOPE unfortunately the more anxious and discontent I become. But please feel free to send me a PM and I will do my best to respond. I will let everyone know my progress and if I decide to have surgery in July.

As a side note: Currently Dr. Hibner was booking surgery dates for April/May when I called this week for any of you who are looking to have sugery. Hopefully one lucky person will get to have their surgery much earlier than expected as they take my slot in January

Hi Faith,
The CT-guided block and Potter MRI sound like a good idea. You want to be as sure as you can before moving on to something as unpredictable as TG surgery.It sounds like you have some difficult days ahead. Doing what you need to do to work thing out sounds like a good idea. Have you tried opiates for pain ? They have helped me a lot along with the Lyrica. The thing I like about both of them is I can increase the dosage if I am having a particularly difficult day. Good luck and all my best wishes to you in the coming months. Check in when you feel like it and take care of yourself first.

Don