Botox Thoughts?

[critthinker]

Wanted to get some advice on Botox. Interestingly enough, my chronic prostatitis / chronic pelvic pain syndrome actually came about due to the inflammation and an infection in 8/2009 that followed a Botox injection I had into the levator ani muscles to treat levator ani spasm. Within 48 hours of the injection, all of my rectal pain disappeared, like magic. However, because my surgeon made some sort of mistake, I acquired a highly resistant infection during the procedure that wasn't resolved for five weeks (after six antibiotics). As you can probably guess, all of this stress on my pelvic floor led to my CPPS.

What's fascinating about this is that my rectal pain disappeared for 7-8 months (about the max amount of time Botox generally lasts) but during this time I developed tremendous suprapubic pain. This seems to support the theory that many experienced people I've spoken with seem to have: Botox can stop one muscle from spasming but ultimately another muscle has to pick up the slack. Here's my question:

After getting proper PT treatment I was essentially totally pain free for weeks at a time at various points throughout the past year. Then something would come along and knock me back down (in January it was neurogenic inflammation and then more recently it was excessive sex). I think my chronic prostatitis / chronic pelvic pain syndrome is largely caused by these kinds of issues and isn't as related to anxiety and stress. I've been debating whether to have a Botox injection done again (this time by a reputable pelvic pain expert using imaging guidance), but have really been going back and forth. Would love to hear if anyone has thoughts on this. I recognize that it will, at best, only offer temporary relief, but another 8 months of being pain free (esp. without all the things that messed up my pelvic floor like infection, excessive sex, neurogenic inflammation) could really give me a nice break from the pain from which I think I could recover completely. Additionally, I will likely be starting a new job soon after being unemployed for nearly a year and I can't really afford to have the kind of relapses I've dealt with in the past year. Am I missing any potential side effects to the Botox? One thing I should add: my doctor has already done a needle EMG trigger point injection and found four areas of extreme tension as measured by the EMG readings...so he would know exactly where to inject.

Thoughts appreciated!!

[webslave]

My 2c is go for it (with, as you say, someone reputable this time). It's relatively safe. We have only a few feedbacks on Botox, so I'm interested to see how you go.

[critthinker]

Hmm yes, I'm leaning in that direction. I think it really does make sense that the Botox simply makes the non-injected muscles work harder, but I also think that it's FAR easier to treat abdominal trigger points than internal ones, for example.

I will be sure to keep everyone posted on the decision/progress.

Webslave, one thing I'm curious about. In your experience of reading about people's experiences of Botox, to what extent do you think the degree of success people witnessed had to do with how much their pelvic floor was responsible for the pain to begin with. One thing I suspect is that many people who do not have success with Botox have Type IIIa (the inflammatory one) and a lot of their pain is coming from something other than muscle spasms. If we delete these people from consideration of success of Botox, I wonder if the success rate would increase.

[webslave]

I do not give much credence to differences between IIIa and IIIb. I think the inflammation, if it is found, is incidental, and occurs as a result of nerve activity in the target organs (usually via crosstalk with pelvic muscle nerves). This has been seen experimentally in other mammals.

[critthinker]

Do you still think that there exists a subset of individuals who have chronic prostatitis / chronic pelvic pain syndrome but who DO NOT have pelvic floor hypertonicity/TrPs? If so, I would imagine these people should be screened out or at least tracked when studies on Botox are done.

[webslave]

According to studies, not all chronic prostatitis / chronic pelvic pain syndrome patients have trigger points. So does hypertonicity that can crosstalk into the pelvic organs (bladder, prostate) exist in the absence TrPts in some men and woman? That's a big question.

[Jay]

I'll bet that it does! I do have trigger points, but I was never packed with them. However, I had one of the worst cases of pelvic floor hypertonicity my PT had ever seen, and my chronic prostatitis / chronic pelvic pain syndrome has been pretty severe.

[critthinker]

Hmm, yes I definitely think that hypertonicity alone can cause similar pain. I think some people (like me) have a combination of TrPs and hypertonic muscles.

[critthinker]

For those who were curious, I decided to go ahead and get the Botox done. Details:

100 units of Botox injected into posterior levator ani bilaterally (50 units) and perineal/anterior levator ani bilaterally (50 units). The injection, which was done with ultrasound and EMG needle guidance, was Botox combined with lidocaine and Decadron, which seems to be Dr. Jordan's cocktail of choice. Cost was pretty high (close to $3,000), and my insurance will likely only reimburse me for a few hundred dollars.

I'd say the first 3-4 days after the procedure I experienced MORE pain, but it is gradually beginning to subside. I had a trigger point block performed by Dr. Jordan a few weeks ago and had a similar experience (about a week of post-injection pain).

Just as a heads up to people, there was no anesthesia used and I have to admit it was ridiculously painful. Thankfully it was a quick procedure (only about 15 min).

If anyone has questions, I'm happy to answer them. My goal with this was basically to give me 6-8 months of pain relief during which I can focus on the W-A Protocol. My situation has been somewhat strange, as I have gone from pain-free periods (lasting up to two months) to ridiculously painful states (lasting up to four months) multiple times over the last year. It's been pretty obvious to me that specific things (neurogenic inflammation and sex) were responsible for my months-long flare-ups.

[Jay]

Hi critthinker,

Thanks for keeping us up to date, and please let us know how things progress. I've heard that Botox injections can take a while to do their thing, so don't give up yet. My thoughts are with you!

[critthinker]

Thanks, Jay. Will make sure to keep everyone updated. The pain has definitely decreased relative to what it was over the past five days. I've been doing a lot of meditation, though, so that could partially explain things. Dr. Jordan said it usually takes 7-10 days for the Botox to kick in.

[critthinker]

Just wanted to provide an update. It's now been over three weeks since I got the Botox injections, and I can't say I'm doing all that better than I was before. However, I think the specific injection sites chosen weren't the right ones. There was a major one (perineal portion of levator ani) that my doc forgot to do, and I frankly don't want to go through all the drama to get another injection.

My advice to everyone here who is considering a Botox injection is to MAKE SURE that a qualified PT identifies the EXACT areas of EXACT muscles that need to be injected. It's not enough to simply say "levator ani," as this muscle is huge. I do believe Botox can work (it worked for me a year ago), but the doctor really needs to be precise in hitting the right spots.

[carld]

Thank you for the update...Man I wish you had better news to report for your symptoms but I respect that you went for it because over all it's not a drastic measure in my opinion to have injections...Botox wears off so I'm not opposed to it...

Just curious have you read my starters list to see if there is anything in there that can help you?

Best to you!!!!

[critthinker]

Yup, this was helpful. I took a look at it many months ago and was either practicing much of it at the time or started practicing some of it from that point forward. I'm still doing PT, and finding that this is most helpful.

Do you know much about nortriptyline? I tried amitriptyline, but it knocked me out cold for like 13 hours, so I'm going to try out nortriptyline soon. I think I'm done with Botox for the moment (esp. considering the cost!), but may consider pulsed radiofrequency, another treatment option Dr. Jordan offers.

[Atari]

I did five Botox injection in external triggerpoints about one week ago. I can just say that its by far the most effective and long lasting treatment so far.

The doctor when in with electronic devise that where attached to the needle. Where he made contact with overactive muscles and nerves he did triggerpoint blockade. In my right Piriformis the muscle was very bad he told me. But he only did a triggerpoint on one side of the body in the Piriformis. Cause if he would have done both sides. I wouldn't be able to walk. I'm going back in January to follow up the injections and maybe do another round of injections.