Health Organization for Pudendal Education

Hello A's Mommy,
I know this is an old e-mail but I was wondering how you did after the Botox with Hibner years ago it seems. Did it help you at all and how long did it take for you to get over the pain after the Botox injections.

Also for anyone else:
Dr. Hibnerwants todo Box into my obturator internus abut 10-20 pricks and maybe a second Botox or stronger injection. He wants to check for a blood vessel of possible pelvic congestion near the branch to the clitoris. Ultraound will show this apparantly. Possibe nerve block to the clitoral branch.
I will be under anestethia. Ihave had 3 months of PT and no change at all. Clitoral stimulation brought n orgasm (suggested by an old PT to check on pelvic floor)and pelvic floor tightness and then a sharp pain that did not go away. I fee llike I have a splinter somewhere sticking in me.

Medicare I found out does not cover Botox, I am looking at $2,500 per 200ml of botox and he may do double . Ultraound, anestethia, dr. fees, local anasethea injection, and possible nerve block to the clitoral branch. OMG this will run into thousands. I am here from Ireland and have spent thousand on PT which has not helped at all now I am looking at these procedures but I cannot stay much longer and money is now an issue.
i feel like my visit here has been a total waste and thousands gone before I Knew this Hibner angle was next. I am so upset cos HIbner could help me buthow in gods name can i keep forking out money not knowoing which procedure is going to work or not. I dont know what to do to be honest anymore........do i get ONE botox and leave, but if htat does not work how can i try the other stuff I will have no money and cannot come back here i cannot afford it and plus flights and places to stay.DOES ANYONE HAVE ANY SUGGESTIONS please.............thankyou

I'll post for A's Mommy because I don't think she is on this site very often. She had botox 3 times I think and it never helped her. She also had TG surgery with DR. Hibner and it left her with Chronic Regional Pain Syndrome. She finally had surgery with Prof. Aszman in Austria and has reported 80% reduction in her pain.

I also had botox with Hibner into the obturator and levator ani 9 months ago. It left me with the worst pain flare. Took about 6 months to get a little reprieve, but I still feel like I am worse overall from it. I have sacroiliac joint dysfunction so the botox just knocked out my pelvic floor and made surrounding muscles in my legs and back work harder. Sitting became worse and walking even became difficult. I do not recommend botox because I have been around the forum for a couple of years and haven't seen anyone get remarkably better form it.

As for recommendations I know you are from Ireland so this is difficult. ARe you in Phoenix now? Did you do PT with Hibner's PT for several months? Did you get an MRI with Dr. Potter in NYC to look for entrapment? Do you have SIJD or do you know what caused your PN and where do you think you are entrapped? Sorry for the questions but I am learning that the biggest part of this "game" is proper diagnosis and even then the treatment options for PN are not great right now. Me, personally, I have gotten worse from every invasive treatment I have tried. So sometimes I think it is just best to manage the pain as best as possible until better diagnosis and treatment becomes available. How long have you had this? I would give Pt and Meds longer than just 3 months. If I had this to do over I would have gotten on meds sooner and gone to the best PTs around for a month and then probably just lived with whatever pain I had left. I'm sure it would be less than I have now as with each treatment I try I get worse and worse.

Lexie, I've had botox injections done to the pelvic floor 4 times over the last 2 years by Dr. Hibner. For me, they have been incredibly helpful and with each injection when they wear off I don't go back to quite the same level of muscle pain nor spasm. I have had the US clitoral nerve block by Dr. Hibner about 7 months ago and it really helped for about 24 hours. I have spoken to someone else on the phone who reads this forum but does not post. She had botox plus had sclerizing of the clitoral vein because it was enlarged and she has been pain free since these two procedures were done and that was several months ago. So as you can see experiences vary. Faith had a terrible experience with botox but I have not and am very thankful for it.

I also have Complex Regional Pain Syndrome (CRPS) from the waist down that started 5 years ago after a hysterectomy and bladder sling procedure. There are some good peer reviewed journal articles on the use of botox for patients with CRPS for muscle spasms and botox is FDA approved for the treatment of muscle spasms.

St. Joseph's hospital does have a payment assistance program. Since you have travelled so far it would be worth looking into if you decide you want to try botox and the US clitoral nerve block. Also, you can go on a payment plan. So you make $25.00/month payment until it is paid off. I had to do that when one of my sons had to have surgery and I didn't have any money to pay for it while I was in school (This was years ago). Took me 3 years to pay off the bill but it got paid and most hospitals are pretty understanding. Below is the link to the payment assistance page at the hospital.

http://www.stjosephs-phx.org//Patients_ ... V2_M063819

Good luck and let us know what you decide.

NYT-

Can you tell us more about the clitoral block and the clitoral vein scleritization procedures? I am very interested in both.

Thanks -

Merrie

The clitoral nerve block is done under undere anesthesia and is done ultrasound guided. He looks for the dorsal vein and evaluates whether the vein is enlarged and/or all crooked. If the vein is enlarged then Dr. Hibner injects a substance (forgot what it is called) into the vein to close off the vein. He got this idea on what is done in patients with trigeminal neuralgia and dr.'s who do the same thing for that neurapathy have had good success with pain reduction or totally pain free so he is hoping he can do the same for those with dorsal neuropathy if the vein is enlarged. For the nerve block he uses the dorsal vein and the pubic bone for landmarks and injects marcaine to numb the area. After you wake up they will evaluate how numb you are in the clitoral area and if the pain is gone. My block lasted about 24 hours and it was heaven. My veins were of normal size so I was not a candidate for the vein procedure.

Lexie, I could be wrong but it seems to me that a trial of bupivocaine injections before Botox would be advisable to see if there's a chance Botox would work. This is what was recommended by Dr. Gajraj in his publication on Botox. You can read the article here: http://pudendalhope.org/sites/default/f ... Gajraj.pdf

Bupivocaine is MUCH cheaper than Botox.

Did you see my post about the doc KarenW went to in San Fran who does these injections? You should not have to travel for this.

Violet

gosh
it seems risky to me seeing as some people havebeen fine after and others not so.
I curently have no pain just a sensation of something stuck and likea splinter as I walk sticking into me.

dorsal vein thing is freaking me out...!
botox..freaking me out!
nerve block freaking me out!

I did not see your post on KarenW in san fran and bufocaine injection..can u repost here for me in reply to this...thanks violet.
maybe I should try a different therapist or do you think hibner can tell me if its the vein then to tell me first before he does anything.

you see if I wake up worse with any problems I cannot stay here in the usa as I will have no money to stay here or a place to live its impossibe, soif something happens to me I am screwed. I cannothandle pain at all.I get to the point of despair.
so you see I could be OK but I need to know is it painful gettingthebotox done and is it painful when you wake up. I am getting 10-20 jabs of it along the OI. who knows what else he will do. I AM TERRIFIED ITS MAKING ME SICK to the point of panic. Dr. weiss sent me to hibner. the mri shoed nothng but a flat pudendal nerve? it came back negatiave except for 2 tarlov cysts at S1 and S2 but they have been there for years they are not someting i want dealt with they do not thnk thats my problem. I HAVE TO DECIDE BY WED OF THIS WEEK AS I AM SCEDULED FOR THE 20TH of june and ihave not booked my flight tophoenix yet. I GUESS ITS A RISK BUT IS IT WORTH IT ? I dont know. Is hibner good or not I need the truth about him tobe honest I need to know.---thanks--lexie
love lexie

I dont' know lexie...if you dont' have pain I dont' know that I would risk the botox personally. Are you muscles very spasmed? That's what botox is for. Hibner is very good at the botox so you can trust him in that regard.

Have you read HerMajesty's posts about tarlov cysts? I personally wouldn't underestimate them.

Lexie, I forgot the doc's name who does Botox in SF but as I recall his office is in the same building as Stephanie Prendergast, PT.