Ok, thanks a lot for the info Griff522 (I know this stuff isn't easy to discuss, to say the least!).
PS
Dr Dellon
Re: Dr Dellon
Griff,
Thank you for sharing your results with Dr. Dellon. It takes a lot of courage to post when your news is not good. This is valuable information for anyone who is considering Dr. Dellon especially those whose insurance pays nothing towards his bill. Thanks again. Wishing you all the best.
Don
Thank you for sharing your results with Dr. Dellon. It takes a lot of courage to post when your news is not good. This is valuable information for anyone who is considering Dr. Dellon especially those whose insurance pays nothing towards his bill. Thanks again. Wishing you all the best.
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
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
Re: Dr Dellon
Very briefly to those considering shockwave therapy>
I tried it in Ferbruary and it inflicted horrible flare-up of pain for me, would never repeat it.
I have pains at the base of penis, and my orthpedist persuated me to have a ESW wave to inguinal ligament which left me
with really strong pain for 3-4 months /aggravation from 3-4/10 to 7-8/10 and it took almost half year to get back to baseline pain.
all the other uro-experts told me that ESW is contraindication in pelvis.
Would never do it again.
M.
I tried it in Ferbruary and it inflicted horrible flare-up of pain for me, would never repeat it.
I have pains at the base of penis, and my orthpedist persuated me to have a ESW wave to inguinal ligament which left me
with really strong pain for 3-4 months /aggravation from 3-4/10 to 7-8/10 and it took almost half year to get back to baseline pain.
all the other uro-experts told me that ESW is contraindication in pelvis.
Would never do it again.
M.
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
Re: Dr Dellon
So sorry to hear of your bad experience. It's really frustrating to take the advice of a drr for treatment and then end up feeling worse!
My chiropractor's new machine is very different than the old one. Here is a link to the new machine http://www.richardwolfusa.com/eswt-tpst.html. One of the things that she pointed out to me is that the treatment should not feel painful. She said that there is no more benefit if the level is higher and painful. So she made sure that she was finding the trigger point but that the pain level I experienced was in a very tolerable range.
My chiropractor's new machine is very different than the old one. Here is a link to the new machine http://www.richardwolfusa.com/eswt-tpst.html. One of the things that she pointed out to me is that the treatment should not feel painful. She said that there is no more benefit if the level is higher and painful. So she made sure that she was finding the trigger point but that the pain level I experienced was in a very tolerable range.
Burning vulva pain began 10/09
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
- shawnmellis
- Posts: 227
- Joined: Sat Dec 04, 2010 8:42 pm
- Location: Concord, NC USA
- Contact:
Re: Dr Dellon
Hi Everyone, This is a long thread, but I have read a lot of the posts on here. My theories on why some people have gotten initially better for a few months but then their pain returned are 1. The nerve maybe finally woke up after surgery and then the pain returned 2. There was scar tissue that formed around the nerve after the nerve was initially freed from the scar tissue from surgery 3. There may be another area of the Pudendal Nerve that was not decompressed 4. An anatomic abnormality could have caused the nerve to be compressed again. These are all just ideas and possibilities I thought of as to why maybe this happens not only with dorsal but with TG surgeries. The most plausible one would seem to be that scar tissue redevelops around the nerve as a result of the body's response from surgery on the affected nerve. I wonder if Hibner's neurawrap may help with this, or if a Laparoscopic surgical approach would help minimize scar tissue if indeed this is the true cause of the nerve pain coming back?
Shawn
Shawn
Bringing Help Awareness Education to Patients & Doctors about PNE through Videos at http://www.YouTube.com/PudendalNerve & PudendalHope.com Please tell Dr. Oz to cover topic of PNE by going to http://www.doctoroz.com/contact Started 1/2010. Initial urinary tract infection in 1/2010. Medication: Diazepam, Tramadol. 4 nerve blocks. physical reinjury 8/2010. 7/2011 Potter MRI Varices dorsal branch 8/23/11 Diagnosis Entrapment of Dorsal Branch Dr. Lee Dellon There's Always Hope!
Re: Dr Dellon
Another reason individuals do well after surgery and then by 2-3 months back to square one is mostly likely due to all the anesthesia medication has worn off thus the return of pain. this fits very well with what I personally experienced and from what other pain doctors have told me.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
- shawnmellis
- Posts: 227
- Joined: Sat Dec 04, 2010 8:42 pm
- Location: Concord, NC USA
- Contact:
Re: Dr Dellon
Hi nyt,
That is also another possible cause. I guess there are many causes. If anybody else has any ideas for the possible causes, or any success stories to tell with Dr. Dellon for PNE feel free to post.
Shawn
That is also another possible cause. I guess there are many causes. If anybody else has any ideas for the possible causes, or any success stories to tell with Dr. Dellon for PNE feel free to post.
Shawn
Bringing Help Awareness Education to Patients & Doctors about PNE through Videos at http://www.YouTube.com/PudendalNerve & PudendalHope.com Please tell Dr. Oz to cover topic of PNE by going to http://www.doctoroz.com/contact Started 1/2010. Initial urinary tract infection in 1/2010. Medication: Diazepam, Tramadol. 4 nerve blocks. physical reinjury 8/2010. 7/2011 Potter MRI Varices dorsal branch 8/23/11 Diagnosis Entrapment of Dorsal Branch Dr. Lee Dellon There's Always Hope!
Re: Dr Dellon
Good point NYT! Central nervous system sensitization is possibly a HUGE missing link to this whole PNE and pelvic pain battle in general. Once that anesthesia is out of the system BAM the CNS winds back up tight and thus begins the vicous pain cycle again. I'm interested to see the results of Ketamine treatments on some of forum members in the future (good luck NYT!).nyt wrote:Another reason individuals do well after surgery and then by 2-3 months back to square one is mostly likely due to all the anesthesia medication has worn off thus the return of pain. this fits very well with what I personally experienced and from what other pain doctors have told me.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Re: Dr Dellon
Ali, Sorry to hear that you're not feeling better. I have decided not to have surgery with any PNE doctor.I don't want to have surgery just to get 3 or 4 months relief and then it comes back worse than before surgery. I may try physical therapy again.I want to find a physical therapist that specializes in pelvic floor problems.
Re: Dr Dellon
reading through this enigma again and again...
I feel that this crucial question of dorsal nerve decompression surgeries must be resolved somehow: why on earth after initial imrovement majority of sufferer got worse again?
I guess this pain pattern is especially typical for dorsal nerve decompression, I got the feeling that the classical TG cases are rather very painful immediately after operation and than got eventuelly somehow better, although it can take years...
Results from dorsal decompressions are rather dissapointing, despite the surgeon brilliancy of dr. Dellon and Aszmann.
But there is a hope - at least some people referred to significant decline of pain after dorsal nerve operation - that means there must be a tool how to supress this pain. This will be maybe solved in the future with better visualization and more approachable placement of injection during the blocks...maybe there will be some agent surpressing the pain for months even years..
Even now there are some patients whose pain is sympathetically based benefiting from superior or inferior hypogastric plexus block for 8-10 months, which is a great achievement...
Maybe laparoscopic approach will be the next step in the dorsal decompression surgery...
I dont know. The only positive thing for me right now is the fact that I am here among extraordinary skillful colleagues, I mean all of you on this forum. I learned a lot and learning every day. Maybe somewhere in the future there is a way out for all of us.
I feel that this crucial question of dorsal nerve decompression surgeries must be resolved somehow: why on earth after initial imrovement majority of sufferer got worse again?
I guess this pain pattern is especially typical for dorsal nerve decompression, I got the feeling that the classical TG cases are rather very painful immediately after operation and than got eventuelly somehow better, although it can take years...
Results from dorsal decompressions are rather dissapointing, despite the surgeon brilliancy of dr. Dellon and Aszmann.
But there is a hope - at least some people referred to significant decline of pain after dorsal nerve operation - that means there must be a tool how to supress this pain. This will be maybe solved in the future with better visualization and more approachable placement of injection during the blocks...maybe there will be some agent surpressing the pain for months even years..
Even now there are some patients whose pain is sympathetically based benefiting from superior or inferior hypogastric plexus block for 8-10 months, which is a great achievement...
Maybe laparoscopic approach will be the next step in the dorsal decompression surgery...
I dont know. The only positive thing for me right now is the fact that I am here among extraordinary skillful colleagues, I mean all of you on this forum. I learned a lot and learning every day. Maybe somewhere in the future there is a way out for all of us.
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly