Health Organization for Pudendal Education

I would love to hear the pro's and con's of those here that have experienced the botox injections. Dr. Castellano and Hibner are planning on injecting 10 vials into my left side to try to relax the muscles in the hope of relieving the pain. Sadly if it doesn't relieve the pain we'll know it is fully the pudendal nerve.

Comments, opinions, pro's, con's on botox????

Thank you!!!

Cons:
- Potential allergic reaction.
- When botox is done before surgery, the muscles that have not been botoxed start spasming to compensate. There is a possibility that the pudendal nerve gets more irritated and that for a good 3 or 4 months.

Thank you Ezer!!

Hi Ezer, I had a severe increase in pain following Botox. Reading your message may explain what happened to me. What does an allergic reaction to Botox mean? That the nerves themselves are allergic to the poison and react by going even crazier (more and more pain?)? So, an adverse reaction to Botox could be caused by an allergic reaction to the poison itself? Or by the compensatory spasming or tightening of other muscles that then press on the pudendal nerve and irritate it even more? Do you have a guess as to percentages of individuals having negative reactions to the Botox?
My x- doctors said that I was the first patient to react this way. And my x-physical therapist said that she has sent at least 100 patients to get Botox and that none of them suffered from an increase in pain. This is hard for me to believe considering how severe my reaction was.

The Houston team only uses it for post op patients who have residual pain. They quit doing it pre-op because they found no benefit from it.

ataraschimmel,
I think I had several problems. Coincidently I had my annual physical right after my Botox injections and my ANA blood test was abnormal (showing an immune anomaly). I had flu like symptoms, blurred vision etc...
But also while my levator and obturator had been injected, I had the piriformis and a couple of other muscles spasming and pulling on the pudendal nerve. So it was a disaster all around.
I don't think many doctors keep statistics. Nobody asked me if botox was successful so I am not sure how practitioners can be so sure. Dr.Filler reckons that a certain percentage of patients react badly to botox.

I've posted about botox before, but I should probably do so again.

I was injected with botox (non-guided, as far as I know) in 2007, in Australia, at the time of surgery for a cystocele, clearance of of 'extensive' abdominal adhesions and cortisone blocks (also non guided) - all performed to address severe and relentless post-decompression pain. The day after this cocktail, my strength started to ebb, and 10 days later, before I could return to NZ, I was readmitted to hospital on the verge of collapse and investigated for an adrenal tumour. Weakly I asked if the botox or cortisone, individually or on top of surgery, could be to blame and was assured that this was not the case. When the adrenal testing was complete, I was advised I was suffering from 'de-conditioning' arising from my pained state. Back in NZ, things went from bad to worse. My fatigue became extreme. I experienced adrenalin rushes and periods of depletion so profound I wasn't inclined to breathe. I was house-bound, often bed-bound, unable to sustain visits from friends and frequently unable to talk on the phone, even though my thinking remained crystal clear. I raised the possibility of CFS/ME with a specialist: it's akin to CFS I was told in as much as my immune system seemed to be overactive, but an atypical version. It was thought that botox may have been to blame. I remained in this state for over two years. Today, 3.5 years later, I am still largely housebound, but sufficiently improved to be able to take a short walk and socialize freely on a good day. Recovery is very much a step forward and half a step back. The one positive is that when the depletion returns, the pain lessens - almost as if the brain has to concentrate on the issue most immediately at hand.

As to botox, the FDA has since issued a black warning, advising that the material has the potential to spread from the injection site to other parts of the body, with the risk of serious consequences. Rarely, these consequences include long lasting and sometimes permanent fatigues.

Stephaniep,
Thank you for your warning. Your recollection of events is a chilling reminder of the risks involved and should be read by people contemplating the procedure. I forgot to mention that I suffered from mild incontinence for a few weeks after the guided injections also in addition to extreme pain on the pudendal distribution path for several months.

Thank you Stephanie. This dang PN(E) is just full of landminds. Everyone seems to have a reaction to something. It's hard to make a decision when what works for one doesn't work for another. I'm very close to saying screw it to all and just trying to figure out how to live with it.

Tracy,
Sometimes I feel that way (at least on the days when I'm not feeling so bad) but the only guarantee I have now is no change in my condition (or worse). If I have to accept being disabled, I will just have to live with it but if there is any chance to get better I will know I will always regret it if I don't go for it. There are no sure things with this problem. Everything is a calculated gamble.

Best Wishes,

Don