Pro's and Con's of Botox

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

Pro's and Con's of Botox

Postby TracyB7777 » Fri Apr 15, 2011 11:25 pm

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!!!
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 ezer » Sat Apr 16, 2011 1:38 am

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.
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 TracyB7777 » Sat Apr 16, 2011 10:26 pm

Thank you Ezer!!
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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Location: Vail, Arizona

Re: Pro's and Con's of Botox

Postby ataraschimmel » Thu May 12, 2011 8:25 pm

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.
please become a follower of my blog
feel free to comment and to share your thoughts with me
http://pudendalneuralgia-atara.blogspot.com/.

almost 37 years in this world, the last few years have been my merciless introduction to hell,
i take 100mg lyrica x 3, 120mg cymbalta, nerve blocks with dr.volovska
will self-medicate with marijuana when i can get my hands on some
am always in pain
if anyone has discovered the why? behind all this suffering please fill me in
thank you all for this forum
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Re: Pro's and Con's of Botox

Postby Celeste » Thu May 12, 2011 9:33 pm

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.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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Re: Pro's and Con's of Botox

Postby ezer » Thu May 12, 2011 10:16 pm

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.
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 Stephanie P » Sat May 14, 2011 4:44 am

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.
Pudendal neuralgia, diagosed as ischial bursitis, from 1985. Worsened by fall in 2003. Bilateral TG surgery in Nantes 2004. Nerve flattened both sides. No improvement, still cannot sit.
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Re: Pro's and Con's of Botox

Postby ezer » Sat May 14, 2011 5:27 am

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.
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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ezer
 
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Re: Pro's and Con's of Botox

Postby TracyB7777 » Sat May 14, 2011 8:53 pm

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. :roll:
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. :(
TracyB7777
 
Posts: 196
Joined: Mon Sep 27, 2010 3:42 am
Location: Vail, Arizona

Re: Pro's and Con's of Botox

Postby donstore » Sun May 15, 2011 5:59 am

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
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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