ESWT Treatment Experience in Cornwall

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HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: ESWT Treatment Experience in Cornwall

Post by HerMajesty »

Jax, the first time Dr. Andrew was posting he called himself a "Doctor" and his arm had to be twisted, figuratively, to get him to admit he is a Doctor of Chiropractic, not an MD or DO. In that same thread he made condescending / rude statements to patients who asked skeptical questions about his techniques. There is really a fine line between defending oneself and intimidating / deceiving patients. When Dr. Andrew popped back up on the board I just stayed out of his posts and discussions of his treatment methods; because I am not a Moderator and it is not my place to determine at what point that line has been crossed. But there is a history of issues and I doubt the Mods made the decision lightly.
Other medical professionals have not defended themselves on the board, in fact they have not posted at all. I'm sure this is due to issues of ethics and liability. I don't think there's a PN surgeon out there that doesn't have some negative feedback on this board, but they all still get clients. When we are serious about considering a practitioner we contact them ourselves, yes? The surgeon who did my tarlov cyst surgery has several patients out there who are "surgical failures" (worse since he worked on them), and I was aware of that when I decided his approach was the best one for me. I am sure that if Dr. Andrew is having any treatment successes, he will continue to get clients even if his ability to cut in on patient update threads has been revoked.
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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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: ESWT Treatment Experience in Cornwall

Post by helenlegs 11 »

Thanks for the clarification HM.
I know that Dr Andrews details remain on the home pages so that any perspective customers still have all of his details for contact. It was simply Dr Andrews attitude towards another forum user that caused the problem, as would happen with anyone here. I believe that all of the posts remain unedited so everyone is still able to see the full text and individual replies.
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.
HerMajesty
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Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: ESWT Treatment Experience in Cornwall

Post by HerMajesty »

Helen, MOST of Dr. Andrew's posts remain intact for review. He originally started two threads, and a few of us were debating with him in the one that is still readable. In the other thread, he referred to me as ""An RN with a chip on her shoulder". That entire thread was deleted by the Mods; not sure I ever knew why...that bit about me could have easily been edited out or left there for all I cared, so there was probably other objectionable content.
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.
Jax87
Posts: 134
Joined: Sun Apr 08, 2012 9:33 pm

Re: ESWT Treatment Experience in Cornwall

Post by Jax87 »

Thanks for the clarification HM and Helen. It's good to keep the forum a civil place for discussion. :D
Started with vulva itching 2/11. Diagnosed as vulvodynia and then PN in 01/12. Progressed to sitting pain and constant burning. Received 4 nerve blocks with only temporary relief, did year of pelvic PT before being diagnosed with bilateral FAI and hip labral tears 7/12. Did orthopedic PT 1.5 years. 3/13 Arthroscopic hip surgery at HSS with Dr. Kelly. Take cymbalta and lyrica daily. About 97% better than worst point thanks to combo of surgery and meds. Yay!
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: ESWT Treatment Experience in Cornwall

Post by Faith »

Thanks everyone for your support. Just to make everyone aware, I did not approach the mods and ask that Dr. Andrew remove his content. One of the mods saw what he posted and contacted me saying that they were sorry and that his comment was in violation of the forum rules. I agreed that Dr. Andrew's response was inappropriate, but that I did not want the content removed because I wanted others to be able to read his response (as offensive as it may be).

Unfortuantely, I did not know about the threads Her Majesty is referring to and that Dr. Andrew had been banned from the forum previously. Had I known this perhaps I would have chosen a different route, but hind sight is always 20/20. I do know I should have waited longer before I jumped on the "ESWT bandwagon", but I knew I didn't want surgery (at the time) so I felt it was my only option and like most of us I wanted relief! It was a risk I felt worth taking at the time and based on four other forum members responses. I had a lot of respect for Dr. Andrew during my treatment, despite my poor response, but honestly, after his written response to my experience on this public forum I have to say I have lost any respect that I had for him.

This forum HAS to be a safe place for patients to report their results with different practictioners/doctors due to the nature of our condition. I am not the only patient who has not had a good response with Dr. Andrew. Unfortuantely they have not posted their response publically though (and who can blame them now?!). I felt my experience had to be shared though. I want to know both good and bad experiences others have had with various doctors/treatments. Every good doctor/practitioner has some successes and some failures....it's nothing to be ashamed of. There's still a lot to be learned about pelvic pain, as I've said previously, so I would be very cautious of any practitioner who thinks they have it all figured out.

Thanks again to the mods for all you do and for supporting us. And thank you for making it public on this thread that Dr. Andrew has been banned from the forum. I think this is important for patients to be aware of when deciding future treatment options.
-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
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: ESWT Treatment Experience in Cornwall

Post by Faith »

For reference, I wanted to post Dr. Andrew's first thread on this forum http://www.pudendalhope.info/forum/view ... T&start=30 I would encourage anyone considering his treatment to read this thread. There are some disturbing and disrepectful comments made, including this one made by Dr. Andrew:

"One of the developers and therapists administering this protocol was a sufferer of PNE! This is how we perfected our treatment. We 'experimented' on him, with his consent, because he was fed up with false promises, misdiagnoses, and suffering. This protocol arose out of sheer desperation!"

Unless Dr. Andrew lied to me (which I don't think he did) Dr. Andrew himself was the sufferer of PNE. So why did he feel the need to talk like it was someone else? Perhaps he was embarrassed to say that he publically had PN? I hope it was for that reason and not the former.

I also want to point out that on Pelvis Stressly's report of his experience with Dr. Andrew http://www.pudendalhope.info/forum/view ... ESWT#p4699, Pelvis Stressly said,

"After all that though, ultimately it didn't work for me (relief can come in the weeks and months following the protocol, but they [the Cornwall team] said we would have at least seen some minimal improvement in symptoms by the end of the week, if there was going to be any subsequent long-lasting effect)."

This is very disturbing to me because I was told that if I didn't see at least 30% improvement in a couple of weeks then I would know the treatment wasn't right for me and then as you can read in my initial post this time frame was changed multiple times to eventually that I would need to come back for a second treatment before I could rule it out that the treatment was ineffective for me. However, Pelvis Stressly (the first HOPE member to see Dr. Andrew -to my knowledge) was told that he should see improvement by the end of the week of treatment! Why has the story changed so much over the years and even in my first few weeks of recovery? I personally, think this was because I was the first patient they had that did not respond positively to the treatment (and in fact had a negative outcome).

I do not post these threads and quotes to discourage people from going to see Dr. Andrew, but only to inform others of the "rest of the story". I feel foolish that I went to see Dr. Andrew with rose colored glasses. To think I've been a member of this forum for 2 years, but I apparently missed these threads!! I really only picked up on Dr. Andrew and ESWT after Lernica's experience. Hopefully future patients of Dr. Andrew will be more informed and Dr. Andrew will be more realistic in his success rates and recovery times.
-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
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: ESWT Treatment Experience in Cornwall

Post by helenlegs 11 »

Hmm, bandwagons can be pretty uncomfortable places faith ;) although there was no necessity for the degree of discomfort you were subjected to.
It just goes to show how desperate people become. I don't mean that in any way disrespectfully towards Dr Andrews ESWT btw, if someone said I had the chance of some good improvement if I stood on my head for a fortnight I would give it a go. see this thread too http://www.pudendalhope.info/forum/sear ... nut+butter
I definitely wouldn't 'feel foolish', rose coloured spec's or no. It is a measure of how little the medical profession have managed to 'manage' this problem successfully so far, unfortunately; absolutely nothing for you to feel foolish about.
I do wish that the powers that be in the medical world did realise that we understand that this problem, or rather solutions to it, are still evolving and as you said
[quote="Faith"]
Every good doctor/practitioner has some successes and some failures....it's nothing to be ashamed of. There's still a lot to be learned about pelvic pain, as I've said previously, so I would be very cautious of any practitioner who thinks they have it all figured out.
.[/quote
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.
carolynm
Posts: 465
Joined: Fri Jul 22, 2011 4:25 am
Location: CO

Re: ESWT Treatment Experience in Cornwall

Post by carolynm »

There are 3 other people from the fb forum who have NOT gotten relief after Dr. Andrews treatment.
Faith, you have my undying support and respect for posting the facts os your story.

Cm
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
kathyd
Posts: 699
Joined: Mon Dec 20, 2010 8:48 pm

Re: ESWT Treatment Experience in Cornwall

Post by kathyd »

Hi All
I have a been offline for the summer (computer was broken) and I have been taking a break.

Hello and best wishes to Faith and Jean and anyone from FB who wrote me....Sorry I was unable to write back due to my computer...

Just wondered if ANYONE (new patients) who saw Dr Andrew after Faith (and after he broke off his partner ship with Glenn) (From May and thereafter)
had positive treatment results?
could you pls post if so.... or feel free to email me if you would like. Id appreciate it.

I would like to hear what the current consensus is on him..
Faith you are always in my prayers...sorry I was unable to get back to you sooner... Just got a new computer and am getting it up and running.
Thanks!
Kathy
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: ESWT Treatment Experience in Cornwall

Post by Lernica »

Hi Kathy,

Nice to see you back online! I've been thinking about you and hope that you are doing well. I've been treated by both ESWT providers, Glenn (a massage therapist) and Dr. Andrew (a chiropractor), and had the same results from both. In both cases their treatment loosened up my pelvic muscles, releasing their clamp on my pelvic nerves, thus allowing me to pursue more conventional treatments (e.g. internal PT) that I had not been able to pursue before. In both cases, however, their treatment was just the beginning, not the end, of my recovery, as I had to correct the pathology in my hips. For a snapshot of my progress since then, please see the thread about labral tear surgery here: http://www.pudendalhope.info/forum/view ... f=9&t=3487. I am doing well and expect to make a full recovery. I am now 6 months post-op on the right hip and 3 months post-op on the left (my PN side).

ESWT is a fairly straightforward technology that can be employed therapeutically by anyone with a good knowledge of the pelvic anatomy. As you know, ESWT is basically just a machine that delivers powerful micro hits all over the pelvis. It's like a mini jack-hammer, or like massage therapy on steroids.

I'm really sorry that ESWT didn't work for you or for Faith. To clarify, I believe that Faith was treated to ESWT by Glenn, not by Dr. Andrew.

Hugs to both of you from Toronto.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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