Pro's and Con's of Botox

Botox options, which Doctors use this form of treatment and techniques offered.

Re: Pro's and Con's of Botox

Postby TracyB7777 » Sun May 15, 2011 5:37 pm

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.
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now. :(
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Re: Pro's and Con's of Botox

Postby HerMajesty » Sun May 15, 2011 7:15 pm

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 :?
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Re: Pro's and Con's of Botox

Postby ezer » Mon May 16, 2011 12:01 am

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!!
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
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Re: Pro's and Con's of Botox

Postby HerMajesty » Mon May 16, 2011 1:05 am

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.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Re: Pro's and Con's of Botox

Postby HerMajesty » Mon May 16, 2011 1:37 am

...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: viewtopic.php?f=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.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Re: Pro's and Con's of Botox

Postby cancel327 » Wed Jul 04, 2012 10:57 pm

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.
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Re: Pro's and Con's of Botox

Postby helenlegs 11 » Wed Jul 04, 2012 11:07 pm

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
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Pro's and Con's of Botox

Postby deBBieW » Sat Jul 07, 2012 4:15 am

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
Vag pain, leg burning 3/11, SIJ inj 7/11, Pelvic PT, Chiro/acupuncture,
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
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Re: Pro's and Con's of Botox

Postby Karyn » Sat Jul 07, 2012 2:46 pm

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
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: Pro's and Con's of Botox

Postby Faith » Sat Jul 07, 2012 3:19 pm

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.
-11/08 vulvodynia began spontaneously around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manip
-Progressive widespread pain- central sensitization ?
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock, but pain is bilateral
-10/12 -bilat ischiofemoral impingement & labral hip tears/FAI
-12/12 - left FAI/labral hip tear surgery - no help so far
www.thepurposeofpain.blogspot.com
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