Oh Celeste - - Thank you for posting this!
http://www.youtube.com/watch?v=3ozT8r2F ... r_embedded
I saw this video for the first time two days ago. It brought tears to my eyes. I could barely breath watching it.
Why? I attended the Headache in the Pelvis (aka Wise-Anderson) clinic in the summer of 2008 with my heart full of hope, spent thousands of dollars and hours and hours of time doing Wise's protocol for a year following the clinic.
I thought something was wrong with me because I wasn't getting better and it seemed like every testimonial was overflowing with success.
Dr. David Wise, who is not a medical doctor, but a PhD who earned his credentials in sociology, spoke to me personally during the clinic and once on the phone before the clinic to NEVER consider the PNE surgery, that it was butchery, and that scared me off from even researching it for two years. I went into a serious depression and even told my closest loved ones I did not want to continue living with the pain. I was desperate and miserable. A year ago today my closest friend with PNE took her life, and during her funeral and the grieving process I vowed to pull myself up, ask for help from my loved ones, and try again. My sister came over that weekend and we spent several days reading on all the PNE sites and researching everything we could find, as well as every doctor's published works we could find.
ALso, many of us from that 2008 Wise-Anderson clinic have stayed in touch through email and NONE of them have been healed, although one said the relaxation exercises did help when he tightened up due to stress. They have all gone on to other measures - a couple are going to Mayo clinic, one was diagnosed with Inflammatory Bowel Disease (and has IC too) and several have contacted me for information on PNE surgery. I have directed them to this site and TIPNA, so hopefully I will see a couple of them on the forums at some point. An interesting note about the group I was in is that I was the ONLY female In the group. I was so worried about feeling embarrassed and exposed, but soon I was just "one of the guys" - a fellow PNE sufferer.
------
Today I am four weeks out from PNE surgery and last night we noticed that I could sit for almost 10 minutes! (not on a hard chair though) I am also more mobile and up and walking, where before I was almost completely bedridden. I have very high hopes that I will be able to be a testament to surgery. I am waiting til the real results at 6 months - one year before I shout it to the world, but then I WILL.
By telling people that the surgery route is dangerous and butchery and that the doctors performing surgeries are irresponsible (which he did), "Dr." David Wise is not only doing a disservice to pelvic pain patients, but he actually may be pushing some over the edge, as in my experience.
I think this video is right on. I is factual, not inflammatory, and speaks the truth. My sincere gratitude to those who created it and those who are passing it forward.
LottaNerve Surgery update
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- Posts: 164
- Joined: Fri Sep 24, 2010 8:56 am
- Location: Central California
- Contact:
Re: Suggestion: post internet links here
http://www.icandpne.wordpress.com
1995 First symptoms of PNE and IC
8/2010 Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 - Dr. Dellon, left dorsal/perineal neurolysis -also failed.
1/2012 3-day ketamine infusions. Pain-free for several days! Bladder flared from IC.
11/2012 Intrathecal pain pump (bupivacaine, clonidine, morphine) Dr. Joshua Prager, UCLA.
2/13 My pain is reduced!
5/15 Living life again!
1995 First symptoms of PNE and IC
8/2010 Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 - Dr. Dellon, left dorsal/perineal neurolysis -also failed.
1/2012 3-day ketamine infusions. Pain-free for several days! Bladder flared from IC.
11/2012 Intrathecal pain pump (bupivacaine, clonidine, morphine) Dr. Joshua Prager, UCLA.
2/13 My pain is reduced!
5/15 Living life again!
Re: Suggestion: post internet links here
Wow! That's a hell of a story LottaNerve.
I'm very pleased for you on your progress so far, and very sorry to hear about your friend. I bet you would have had the surgery earlier if Dr Wise hadn't put you off!
By the way, where did you have your surgery done and by what method?
Cheers
Peaches
I'm very pleased for you on your progress so far, and very sorry to hear about your friend. I bet you would have had the surgery earlier if Dr Wise hadn't put you off!
By the way, where did you have your surgery done and by what method?
Cheers
Peaches
PN diagnosed in 2009 by Dr Greenslade, Bristol
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
Re: LottaNerve Surgery update
These posts have been split from the thread they were originally written in as they are more appropriate here in this section.
Re: LottaNerve Surgery update
Here is another link. It shows the deceptive marketing practices used to promote the service. I just really hope that there will be an end to pain patients being misled by these false claims.
http://www.youtube.com/watch?v=kJVcgLmgFr8
http://www.youtube.com/watch?v=kJVcgLmgFr8
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
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
-
- Posts: 164
- Joined: Fri Sep 24, 2010 8:56 am
- Location: Central California
- Contact:
Re: Suggestion: post internet links here
Peaches,peaches wrote:Wow! That's a hell of a story LottaNerve.
I'm very pleased for you on your progress so far, and very sorry to hear about your friend. I bet you would have had the surgery earlier if Dr Wise hadn't put you off!
By the way, where did you have your surgery done and by what method?
Cheers
Peaches
Sorry I didn't see your question sooner. I had surgery by Dr. Michael Hibner in Phoenix, AZ using the TG method.
http://www.icandpne.wordpress.com
1995 First symptoms of PNE and IC
8/2010 Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 - Dr. Dellon, left dorsal/perineal neurolysis -also failed.
1/2012 3-day ketamine infusions. Pain-free for several days! Bladder flared from IC.
11/2012 Intrathecal pain pump (bupivacaine, clonidine, morphine) Dr. Joshua Prager, UCLA.
2/13 My pain is reduced!
5/15 Living life again!
1995 First symptoms of PNE and IC
8/2010 Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 - Dr. Dellon, left dorsal/perineal neurolysis -also failed.
1/2012 3-day ketamine infusions. Pain-free for several days! Bladder flared from IC.
11/2012 Intrathecal pain pump (bupivacaine, clonidine, morphine) Dr. Joshua Prager, UCLA.
2/13 My pain is reduced!
5/15 Living life again!
Re: LottaNerve Surgery update
HI LottaNerve,
How are you feeling this week? I hope a little better every day!
Warm regards,
Karyn
How are you feeling this week? I hope a little better every day!
Warm 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: LottaNerve Surgery update
Hi lotta nerve!!
I hope an pray you are having "notta lotta nerve" symptoms and are getting better each day.
Love ya,
AthenasMommy
I hope an pray you are having "notta lotta nerve" symptoms and are getting better each day.
Love ya,
AthenasMommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Re: LottaNerve Surgery update
![Laughing :lol:](./images/smilies/icon_lol.gif)
![Laughing :lol:](./images/smilies/icon_lol.gif)
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: LottaNerve Surgery update
I'm glad you put those u-tube posts in for us to see . I thought of going to his clinic back in 2008 .We become so desperate to stop the pain . I have found so much spin /BS by therapists and Doctors , i'm glad that we have sites like this to share our experience , I have so many horror as well ,at least now I'm more educated now .It is sad that there is so many people who take advantage of our pain for $$$$.
Re: LottaNerve Surgery update
I think if u say 'deception" u must also allow the other side to respond,, Celest ... so here it is :Celeste wrote:Here is another link. It shows the deceptive marketing practices used to promote the service. I just really hope that there will be an end to pain patients being misled by these false claims.
http://www.youtube.com/watch?v=kJVcgLmgFr8
http://www.chronicprostatitis.com/forum ... =36&t=7191