Health Organization for Pudendal Education

Just thought I'd give an update after my Phoenix trip to see Dr Hibner.He scheduled me for botox,steroid injections and varicose vein scarring if the ultrasound truly shows dialated dorsal veins as the Potter MRI indicated. I'm scheduled for Nov 13th . The whole cost with hospital stay , anesthesiology ,and Dr Hibner is around $4800.00
Dr Hibner is as everyone has said, very personable and informative. He has worked with Dr Aszmann in Austria and has even sent a few patients to him whom he felt would benefit having the dorsal nerve decompression surgery. He does feel there are successes with that surgery .
Dr Hibner says the dorsal vein scarring sometimes requires several treatments per vein and a couple of months before they reduce in size . He would not agree with others who feel only surgery can deal with varicose veins .He also says he will only do one side at a time because in the past he once did both sides and a patient had swelling for a time because of lessened blood flow. Comments from any of you who've had past experiences with this would be greatly appreciated .
If the botox works it would be assumed my pain is from spasming muscles and surgery would be ruled out. On the other hand surgery would follow if botox doesn't help. I'm hoping the steroid contains no fungus from a dirty pharmacy compounding factory . I would assume they are now safer than ever before following all the recent problems though.
Anyway I do have some hope that there is more that can be done .
I write this hoping it will give someone clues to your own journey out of pain. Better days to all of you!!
Earl

Earl, good luck and I hope this helps!

Regarding the steriod injections. Below is a link to the FDA website in which you can access all the facitilities that received the steriod. St. Joseph's Hospital and Medical Center did receive steriod from the manufacturer in MA but they should have long discarded of them by now.

http://www.fda.gov/Drugs/DrugSafety/Fun ... efault.htm

Earl,
I am a bit concerned about Botox being used as a test whether to have surgery. There are 25+muscles in the pelvis and only 3 or 4 are injected. According to my PT, the muscles not injected take the slack and can create tremendous pain without any proof of an entrapment.
For example, I had the obturator, levator, and adductors injected. A few days later, my hamstring and piriformis that were not injected were spasming.

Earl, I would be interested to know if Dr. Hibner has ever had a patient who had permanent success from Botox. That might be a question you want to ask before having Botox. In Dr. Gajraj's description of his protocol I think he injects with something like marcaine or lidocaine into the muscles first to see if that helps -- as a test to see if Botox is going to help.

Violet

Hi all,
I definitely have some questions regarding my upcoming Phoenix trip but I've tried some of the steroid injections in the past with small short time improvement a few times. I feel if after three months beyond botox and vein embolism I have no relief then I could dive into surgery knowing its my best shot. I've never been able to totally eliminate spine problems from causing the pelvic pain and if I would be pain free even for a short time after these pelvic injections it would allow me to not look into lumbar spinal stenosis anymore as my problem.
In regard to Violets question regarding a cure with botox it seems many who have the botox need it repeated but with added improvement after each course of injections. Im pessimistic that it will cure me .

Is there any chance the pudendal artery could be involved, inhibiting bloodflow to the nerves and muscles of the pelvis?

Healin

I do feel blood flow may be a problem. Maybe caused by the continuously tense muscle squeezing blood vessels. Dr Hibners nurse said varices can be caused by muscles tensing around veins.

in most cases, there is significant contribution of vasular (veins), muscular and nerve related problems.
That is way it is diffficult to pinpoint what is the underlying cause. Nerve entrapment will impose spasmed muscles, and imbalance in muscular structures will infulence and irritate the nerves. Very difficult to find the first, underlying reason.
As far I know, the succes rate of varices embolization as well as other surgical solutions is quite low.
Surgery is justified only when the entrapment is clearly the reason. And that will be known only after operation, thats viscious cycle many of us are living within....

healinfeelin wrote:Is there any chance the pudendal artery could be involved, inhibiting bloodflow to the nerves and muscles of the pelvis?

Healin

Pudendal blood vessels and nerves run alongside each other so if one is compressed, the other often is too.

Hi all,
Three weeks post injections. I haven't felt like posting following my procedures in Phoenix. I now have fecal incontinence and worse sexual problems then ever before. Pain levels are worse then ever and I still have dark bruising in the injection sites. Late in the game dr Hibner changed my blocks from a dorsal nerve block to a bilateral perineal nerve block. My problems began immediately after injections and I thought it had to do with the brief lose of function following the blocks but they continued. I'm told Botox doesn't start to work till 5 days. Now I'm not sure if this is permanent from nerve damage from injections or what . I guess I'll have to wait 3 months to find out . If you don't hear from me for a while I'm just too discouraged to post . Earl