Health Organization for Pudendal Education

Thanks Don!! I do basically (at least when I'm not feeling sorry for myself) feelt he same way. I have to at least try or I'll never know if something would've helped. Just find the process so frustrating. Especially when it feels like you're not being listened to by the medical "experts". Finally got my records from Hibner's office and he and Dr. Castellanos didn't listen or follow thru either. My records show pain all on left side, shingles in 8th grade on right hip, but further into the diagnostic area it says they are on the same side and therefore they won't try nerve blocks. UGH!!! I'll be calling them on Monday to correct that and see if it changes anything.

As far as I know, there is also the risk of classic anaphylactic allergic reaction to botox. I was waiting for a hair appointment once and there was a video running in the waiting room about cosmetic botox, which advised to seek health care immediately if difficulty breathing, etc after the procedure.
I'm just answering the question about what kind of reaction one could get, not trying to scare anybody as I myself am in the process myself of fighting my insurance to get some botox in my piriformis muscles. To me, entrapment due to piriformis syndrome is the last thing i need to rule out before opting for major neurosurgery (for S2 tarlov cysts). So to me there is no comparison when it comes to risk, by doing botox I am doing the less risky option first.
I did consider, and discuss with my husband, whether I should spend what is probably approximately 40 more years of life at my current level, or assume significant risk to get well. We decided on the risk. The fact is if I take one day at a time, it really isn't that bad, but over the long term my symptoms and being on meds just wears me down. I have been doing this pudendal thing for 5 or 6 years now and while I am much better than i was, I still know for sure I don't want to do it for, who knows, maybe ten times as long. Folks in my family have this irritating habit of living to be reeeeeeally old

HerMajesty,
I completely understand your choice and would probably take the risk as well. But knowing that you can suffer from setbacks, I am sure you are prepared and have some help lined up just in case. Having a negative reaction was a total surprise to me. I was fully expecting to be able to drive back home by myself 300 miles away after a few hours of rest. I had no contingency plan. When I posted about my adverse reaction on Tipna a week later, very few people believed me, and I even received a PM asking me to remove my post because I was apparently unfairly discouraging people from getting Botox injections!!

Good advice ezer, fortunately I am getting it done through a local provider and will be driven home. Plus at this rate, I'll probably get injected over summer break by the time my insurance appeal goes through and I schedule the procedure...so no place to drive.

...the above reminded me I should give this tip to everyone: Any Pain Clinic Anesthesiologist is used to sticking needles into all these muscles under fluoroscopic or ultrasound guidance. They are just used to doing it for different diagnoses than ours, and sometimes only have done steroid but have not done botox. Still, if you go in to a compassionate interested Doc of this kind, armed with information (I have a ton of research papers listed on this thread right now: http://www.pudendalhope.info/forum/view ... =24&t=1249 ) often they will be agreeble to do these procedures. So if an exotic, expensive, far away pudendal expert recommends that you get specific muscles botoxed, I recommend shopping your local pain clinics for an in-network Doctor to do it. The only disadvantage is that they are not experts at getting this stuff approved by insurance so you might be more likely to have to work with the insuranvce company yourself; that's what I am doing now. There are dozens of pain Docs in my area who inject the piriformis for classic piriformis syndrome (sciatica, etc), all I had to do was find a friendly one who would listen to my situation. So I am going to be 10 miles away from home when I get this done, not 300 miles.

i had a botox injection on september of last year for rectual spams. it made it completely worst. now my butt cheeks feel tight all day long. and i get more anal fissures than ever. not a good choice for rectal spasms. it made it worst.

Sorry to here about this cancel327. Did they target any specific muscle in your case?
I had botox in my piriformis muscle which did work in as much as the strip of buttock pain was eased but the nerve pain didn't improve unfortunately.
Have you anything else in mind for treatment?
take care,
Helen

Hi everyone,
I just read this whole thread. I just saw Hibner, and of course he suggested Botox. I have not agreed yet, I'm waiting for my insurance to get back to his office - first step. When I read the reactions people had, I find it so interesting that Hibner's office doesn't go over any of the risks. I spoke to his nurse after I was home, and asked again about side effects. She said other than risk of infection, there would be soreness of course. Hibner said he does not recall a single patient that has had a lasting increase in pain. He said he has done hundreds of these procedures (I'm sure he has), and women come from all over to have it done, and repeated for more relief.

How can I find out what the FDA says about Botox? Is there anything specific as far as risks for pelvic muscles? I suppose I would be told in more detail when I'm at Hibner's office, perhaps before the procedure. I did ask about the effect of Botox and cystocele, and I was assured that it would not have any impact. Botox wears off after 3-4 mos. as we know.
Guess I need to do some more research.

Thanks
Debbie

HI Deb,
I understand Dr. Hibner doesn't put a lot of weight in the MRI. Is the reason why he wants you to try the botox because he thinks it's possible you do not have entrapment, but rather compression from a tight pelvic floor?
Very difficult decision, and I don't envy your position. I guess I would consider my symptoms, how they correlate with the MRI you recently had done and then place a value on the botox procedure. To the best of my knowledge, Botox is not covered by insurance.
Hugs,
Karyn

I am one that was made worse from Botox. I need to sonehow get in touch with Hibner's office and let them know my experience. I was in pain 4-5/10 and still worked 4-8 hrs a week and was able to care for my family decently well. After botox I was in horrible pain, had to quit working, and was basically housebound. Pain levels 6-8/10. I couldn't sit at all, my hamstrings, low back, and calves became extremely tight to where I couldn't stand for more than 10 mins. This lasted for 6 months. Then through the help of meds and massage I was slowly able to start sitting a little again and standing became a little easier. But overall I am worse since the Botox. I have huge knots in my muscles due to all the compensation that took place while the Botox knocked out my pelvic floor. No amount of massage has been able to make a dent in this horrible muscle tightness iny low back which makes it difficult for me to stand up straight some days. Before botox i used to be able to go to church and sit/stand through both Sunday school and church ( which is about 2.5-3 hrs total) now I struggle to make it through Sunday school 1.5 hrs. Botox has helped people but it was the worst decision I have ever made. If you have hip issues ( imingement or labral tears) or pelvic instability then I highly would recommend NOT having Botox. If the pelvic floor is helping to stabilize the pelvis as it seems to be in me then getting Botox will make other muscles that support the pelvis/hips work harder.