Sorry things haven't gone well Earl, although very glad to hear from you of course. I couldn't imagine that BIlateral perineal botox would have any other effect than exactly what you have described. I just hope the effects wear off soon, especially as you have had no pain relief. Not good!
I had botox into my piriformis muscles which did give me pain relief in that muscle but no nerve pain relief, (due to scar tissue around the nerves which the botox can't have an effect on) so maybe similar in that respect, of course paralysing that muscle (and only one side) didn't have the devastating effects you have encountered.
I'm sure that the botox will wear off and things will get back to normal (your/our 'normal')
I prescribe that you hang around here and don't feel so discouraged, people here will always try and help you through.
Take care,
Helen
Surgery with Dr Azsmann
- helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Surgery with Dr Azsmann
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.
Re: Surgery with Dr Azsmann
Earl,
I am sorry to hear about your situation. I also had a very bad reaction to Botox. I experienced urinary incontinence and terrible terrible pain. It went away eventually after a couple of months. PT did help me recover.
I am sorry to hear about your situation. I also had a very bad reaction to Botox. I experienced urinary incontinence and terrible terrible pain. It went away eventually after a couple of months. PT did help me recover.
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
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
Re: Surgery with Dr Azsmann
Thank you guys for your encouragement and support! You're the best!
Earl
Earl
7/09 penile numbness, sitting discomfort after injury 2 weeks post vasectomy.Neurologists MRIs and urologists. 2/10 Dr Antolak steroid injections ,PN diagnosis. 3/10 MRN. 12/11 Periformis /pudendal surgery Dr Filler . 5/12 "Headache in the Pelvis " . 9/12 Potter MRI .11/12 Dr Hibner -Botox,Sclaritization, nerve block .Worsening.Scheduled for Right TG Surgery with Dr Hibner April 2013.
Re: Surgery with Dr Azsmann
Earl, my PT found out that the muscles injected relaxed as expected but other muscles took the slack and were spasming to compensate. I cannot emphasize enough how PT helped me recover from 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
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
Re: Surgery with Dr Azsmann
I know I'm probably jumping off the bridge, so to speak, but after trying everything else I'm scheduled for surgery with Dr Hibner Feb 11. The success rates as with all the other doctors is very bleak but i feel I'm ready to try anything . I do feel he is one of the best out there by hearing from some of you alls stories. I just wish there was more promise of it curing me. Its been so difficult trying to be strong for my children. I can't stand letting them see how down I am with this . Its been impossible to hide everything when I spend so much time in bed and no longer go to work. Pretending I'm handling it OK is becoming almost impossible. Earl
7/09 penile numbness, sitting discomfort after injury 2 weeks post vasectomy.Neurologists MRIs and urologists. 2/10 Dr Antolak steroid injections ,PN diagnosis. 3/10 MRN. 12/11 Periformis /pudendal surgery Dr Filler . 5/12 "Headache in the Pelvis " . 9/12 Potter MRI .11/12 Dr Hibner -Botox,Sclaritization, nerve block .Worsening.Scheduled for Right TG Surgery with Dr Hibner April 2013.
Re: Surgery with Dr Azsmann
I do wish my diagnosis would have been more thorough with Dr Hibner. I hear Loretta the PT is very good at discerning which nerves are causing the symptoms. I did see Lisa Wadsworth whom is very nice and professional but Dr Hibner did not do a physical exam . it just seems waiting two months for a surgery in an unknown location with unknown symptoms ( to him) other than a few of my own descriptions is like a shot in the dark. What if its a dorsal nerve problem- or lumbar? Or a ton of other possibilities ?
Also has anyone with PN been helped by Neurolumen? Its pain unit of some kind. kbosler@neurolumen.com
Also has anyone with PN been helped by Neurolumen? Its pain unit of some kind. kbosler@neurolumen.com
7/09 penile numbness, sitting discomfort after injury 2 weeks post vasectomy.Neurologists MRIs and urologists. 2/10 Dr Antolak steroid injections ,PN diagnosis. 3/10 MRN. 12/11 Periformis /pudendal surgery Dr Filler . 5/12 "Headache in the Pelvis " . 9/12 Potter MRI .11/12 Dr Hibner -Botox,Sclaritization, nerve block .Worsening.Scheduled for Right TG Surgery with Dr Hibner April 2013.
Re: Surgery with Dr Azsmann
Earl,
It looks like, when you go pass the marketing jargon, that it is a combination of a TENS unit and a low power LED infrared unit. I have tried both separately and did not benefit at all. I don't think combining the two would make it any more efficacious.
It looks like, when you go pass the marketing jargon, that it is a combination of a TENS unit and a low power LED infrared unit. I have tried both separately and did not benefit at all. I don't think combining the two would make it any more efficacious.
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
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
Re: Surgery with Dr Azsmann
Hi Earl,
I'm a bit confused about some of the things you've written and hope you can clarify for me:
Best regards,
Karyn
I'm a bit confused about some of the things you've written and hope you can clarify for me:
Earl wrote: I'm scheduled for surgery with Dr Hibner Feb 11.
How did you get a surgery date with no exam? Who administered the blocks/botox in November?Earl wrote: I did see Lisa Wadsworth whom is very nice and professional but Dr Hibner did not do a physical exam .
I can understand your concern. It may be worthwhile to rule these things out or confirm them prior to proceeding with surgery.Earl wrote:What if its a dorsal nerve problem- or lumbar? Or a ton of other possibilities ?
Best regards,
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.
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.
Re: Surgery with Dr Azsmann
Yes Karyn that did sound a bit confusing.Dr Hibner did do the Botox and other procedures and Lisa Wadsworth did an exam.I Just Hoped for more confirmation specifically pinpointing where my problem lies. I suppose with this problem we don't get that confidence until they cut . I had heard that the PT makes an exam too and is very good at diagnosing( I forget her name). I incidentally am so ready to get on with surgery. They were kind enough to schedule it knowing that there were some unanswered questions. Over the phone is not as good as in there office though and I won't get to do that until a couple days before surgery.
Earl
Earl
7/09 penile numbness, sitting discomfort after injury 2 weeks post vasectomy.Neurologists MRIs and urologists. 2/10 Dr Antolak steroid injections ,PN diagnosis. 3/10 MRN. 12/11 Periformis /pudendal surgery Dr Filler . 5/12 "Headache in the Pelvis " . 9/12 Potter MRI .11/12 Dr Hibner -Botox,Sclaritization, nerve block .Worsening.Scheduled for Right TG Surgery with Dr Hibner April 2013.
Re: Surgery with Dr Azsmann
Thank you for the clarification, Earl.
I hope you get your questions answered and I wish you the very best!
Kind regards,
Karyn
I hope you get your questions answered and I wish you the very best!
Kind regards,
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.
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.