These are the pageviews for this blog, by country, from May 2010 up to today:
New Zealand 696
United States 168
United Kingdom 141
Australia 121
Canada 34
Russia 34
Ukraine 26
Netherlands 25
Peru 23
Spain 18
This blog received 200 pageviews in January 2011 alone, from the following countries (in order of highest to lowest number of pageviews): New Zealand, Australia, United States, India, United Kingdom, Singapore, Canada, Germany, Malaysia, Netherlands.
Common key words used in Google searches that lead to this blog are:
endoscopic thoracic sympathectomy disability
Tuesday, February 1, 2011
Monday, January 31, 2011
HDC decision on complaint against Auckland ETS surgeon Dr Murray MacCormick
In December 2010, we were informed by letter that New Zealand's Health and Disability Commissioner, Anthony Hill, had found in favour of Dr Murray MacCormick.
Here are links to the HDC's decision letter (one link leads to one scanned page, so five pages/links in total):
page 1
page 2
page 3
page 4
page 5
Note the commissioner's comment on page 4 about how it would be "unfair" for him to request advice from a neurologist!
And here are links to the earlier letter that Dr MacCormick sent to the HDC when they approached him to hear his side (two links to two scanned pages):
page 1
page 2
The expert chosen to aid the HDC's investigation in the case, Professor Justin Roake, is a vascular surgeon who works at a private practice in Christchurch, New Zealand, that offers Endoscopic Thoracic Sympathectomy (ETS).
ETS is, in best practice, supposed to be a last resort treatment for those with primary (lifelong, of unknown cause) hyperhidrosis, when all other treatments have been tried and failed. Even then, it is a surgery that comes with a significant risk of adverse side effects.
The New Zealand ETS patient who this complaint was made on behalf of never actually had primary hyperhidrosis. She was simply suffering short-term (duration two years approx. in middle age) excessive facial sweating, and other problems such as tremors, as side effects of the high dose of the antidepressant AROPAX she was taking in 2004/2005. The failure to realise this on the part of her prescribing GP, Dr Paul Fur, who referred her to Dr MacCormick, is disturbing. And Dr MacCormick's behaviour - in offering this patient ETS and describing it as a "treatment of choice" while acknowledging in his letter to the HDC that AROPAX is "well known to cause sweats in susceptible individuals" - speaks for itself.
The patient feels that her already severe Compensatory Sweating (CS) - a common adverse side effect of ETS - is getting worse: she gets soaked in sweat from her chest to knees daily in warm and hot weather. In addition, she has been experiencing other health issues that may be related to ETS. She has spoken several times of how she has contemplated ending her life because of how the CS has affected everything - her professional life, her social life, her quality of life.
Any New Zealand ETS patients contemplating making a formal complaint about your ETS surgeon, please feel free to reference this complaint in support of your own. The reference number is: C10HDC00679
The outcome of this complaint has been disappointing, to say the least. But it has created a paper trail that other New Zealand ETS patients can reference and use as a resource when making their own complaints.
It is vitally important that ETS patients suffering from the devastating side effects of this elective surgery make formal complaints about their surgeons who did not disclose during pre-surgery consultations the many frequent and less frequent adverse side effects of ETS. Eventually, the number of complaints will add up, and the authorities will be forced to act.
In the mean time, we have the power of the Internet. In the case of this recent complaint, the HDC did not even come close to 1) ensuring that the rights of the patient were upheld, and 2) investigating the complaint fairly - as is the Commissioner's role. However, this does not mean the Kiwi ETS Group has failed. We are still here and we are still one of several voices on the Internet warning those considering ETS surgery that the outcome of ETS surgery is often nothing like what your surgeon will promise you. This irreversible surgery does leave a significant number of patients with serious health issues that have devastating, life-changing effects, such as bradycardia, severe compensatory sweating, ongoing neuropathic pain, erectile dysfunction, and anhidrosis and the associated impaired thermoregulation, to name but a few severe and not uncommon side effects.
The wealth of published medical research on sympathectomies supports this truth, as do the testimonies of the many suffering patients. While those in power might currently choose to look the other way, they cannot silence either these testimonies or the medical research documenting the risks of ETS.
Here are links to the HDC's decision letter (one link leads to one scanned page, so five pages/links in total):
page 1
page 2
page 3
page 4
page 5
Note the commissioner's comment on page 4 about how it would be "unfair" for him to request advice from a neurologist!
And here are links to the earlier letter that Dr MacCormick sent to the HDC when they approached him to hear his side (two links to two scanned pages):
page 1
page 2
The expert chosen to aid the HDC's investigation in the case, Professor Justin Roake, is a vascular surgeon who works at a private practice in Christchurch, New Zealand, that offers Endoscopic Thoracic Sympathectomy (ETS).
ETS is, in best practice, supposed to be a last resort treatment for those with primary (lifelong, of unknown cause) hyperhidrosis, when all other treatments have been tried and failed. Even then, it is a surgery that comes with a significant risk of adverse side effects.
The New Zealand ETS patient who this complaint was made on behalf of never actually had primary hyperhidrosis. She was simply suffering short-term (duration two years approx. in middle age) excessive facial sweating, and other problems such as tremors, as side effects of the high dose of the antidepressant AROPAX she was taking in 2004/2005. The failure to realise this on the part of her prescribing GP, Dr Paul Fur, who referred her to Dr MacCormick, is disturbing. And Dr MacCormick's behaviour - in offering this patient ETS and describing it as a "treatment of choice" while acknowledging in his letter to the HDC that AROPAX is "well known to cause sweats in susceptible individuals" - speaks for itself.
The patient feels that her already severe Compensatory Sweating (CS) - a common adverse side effect of ETS - is getting worse: she gets soaked in sweat from her chest to knees daily in warm and hot weather. In addition, she has been experiencing other health issues that may be related to ETS. She has spoken several times of how she has contemplated ending her life because of how the CS has affected everything - her professional life, her social life, her quality of life.
Any New Zealand ETS patients contemplating making a formal complaint about your ETS surgeon, please feel free to reference this complaint in support of your own. The reference number is: C10HDC00679
The outcome of this complaint has been disappointing, to say the least. But it has created a paper trail that other New Zealand ETS patients can reference and use as a resource when making their own complaints.
It is vitally important that ETS patients suffering from the devastating side effects of this elective surgery make formal complaints about their surgeons who did not disclose during pre-surgery consultations the many frequent and less frequent adverse side effects of ETS. Eventually, the number of complaints will add up, and the authorities will be forced to act.
In the mean time, we have the power of the Internet. In the case of this recent complaint, the HDC did not even come close to 1) ensuring that the rights of the patient were upheld, and 2) investigating the complaint fairly - as is the Commissioner's role. However, this does not mean the Kiwi ETS Group has failed. We are still here and we are still one of several voices on the Internet warning those considering ETS surgery that the outcome of ETS surgery is often nothing like what your surgeon will promise you. This irreversible surgery does leave a significant number of patients with serious health issues that have devastating, life-changing effects, such as bradycardia, severe compensatory sweating, ongoing neuropathic pain, erectile dysfunction, and anhidrosis and the associated impaired thermoregulation, to name but a few severe and not uncommon side effects.
The wealth of published medical research on sympathectomies supports this truth, as do the testimonies of the many suffering patients. While those in power might currently choose to look the other way, they cannot silence either these testimonies or the medical research documenting the risks of ETS.
Monday, December 6, 2010
Another update on the complaint against ETS surgeon Dr Murray MacCormick
The Kiwi ETS Group received an update from the Health and Disability Commissioner (HDC) on November 22. The HDC stated that they received our email in October, and that they went ahead with their request for 'expert' advice from a vascular surgeon "to assist the Commissioner in deciding what action to take on this complaint".
The HDC stated that they have now received the vascular surgeon's report and that they will "carefully review this information". They concluded by saying they will be in touch again once the Commissioner has decided what further action to take.
The HDC stated that they have now received the vascular surgeon's report and that they will "carefully review this information". They concluded by saying they will be in touch again once the Commissioner has decided what further action to take.
Monday, November 1, 2010
Quick update on complaint against ETS surgeon Dr Murray MacCormick
This is a just a quick note to say that the complaint made to the Health and Disability Commissioner (HDC) is still in progress.
-The HDC contacted Dr MacCormick and gave him a chance to respond to the complaint.
-After hearing Dr MacCormick's response, the HDC decided to seek 'expert' opinion from an 'independent' vascular surgeon, and notified the Kiwi ETS Group of this by letter.
-The Kiwi ETS Group emailed the HDC after receiving the letter, asking them to bear in mind several key aspects of our complaint that we do not believe should or can be affected or changed by a second 'expert' opinion (e.g., the lack of informed consent and strongly suspected misdiagnosis, the surgeon's lack of care and professionalism).
We also re-highlighted that the side effects the ETS patient is suffering from are documented and well known - not rare - and that a vascular surgeon is NOT an expert in the Autonomic Nervous System. We asked the HDC to consider consulting a neurologist, and to review the medical literature we sent them copies of.
-The HDC contacted Dr MacCormick and gave him a chance to respond to the complaint.
-After hearing Dr MacCormick's response, the HDC decided to seek 'expert' opinion from an 'independent' vascular surgeon, and notified the Kiwi ETS Group of this by letter.
-The Kiwi ETS Group emailed the HDC after receiving the letter, asking them to bear in mind several key aspects of our complaint that we do not believe should or can be affected or changed by a second 'expert' opinion (e.g., the lack of informed consent and strongly suspected misdiagnosis, the surgeon's lack of care and professionalism).
We also re-highlighted that the side effects the ETS patient is suffering from are documented and well known - not rare - and that a vascular surgeon is NOT an expert in the Autonomic Nervous System. We asked the HDC to consider consulting a neurologist, and to review the medical literature we sent them copies of.
Friday, August 27, 2010
Why prospective ETS patients so often don't hear the full story, and the ongoing effort to change this
'CSmess' is an American professional and family man who moderates and regularly contributes to the Internet forum ETS and Reversals Discussion. He has had both an ETS and a reversal surgery. The reversal only made his side effects worse.
ETS and Reversals Discussion was set up in the early to mid-2000s by American Carole Edward, who lives with hyperhidrosis, so that ETS patients around the world who have had bad outcomes from the surgery can come together online, tell their stories, learn more about their side effects, support each other, discuss possible treatments for side effects, name their surgeons, discuss their legal options, and more. A key mission of the forum is also to WARN prospective ETS patients about the other side of the ETS story - the one the ETS surgeons don't acknowledge and don't want prospective ETS patients to hear.
The forum has members from the following countries:
Australia, New Zealand, the US, the UK, Canada, Ireland, Spain, Sweden, Norway, Poland, Chile, Peru, Thailand, Taiwan, Malaysia...and probably more countries. Users of the forum don't always reveal their nationality.
In response to a happy ETS patient who expressed the view that the forum overwhelmingly contains the stories and experiences of those who have had devastating results from their ETS surgeries, 'CSmess' wrote the following on ETS and Reversals Discussion.
******
"There is a huge amount of published research showing that a very substantial percentage of ETS patients experience disabling side effects that dramatically lower their quality of life and diminish their health. Yet, you will not find a single testimonial from any of these thousands of souls published in any surgeon's brochure or on their websites. Furthermore, while many surgeons provide telephone numbers of past patients to prospective patients, they only hand out the numbers of the happy patients. The unhappy stories are swept under the carpet. Prospective patients get to hear only one side of the story.
"The only place where the voices of the many disabled patients can be heard is on forums like this one.
"In other words, lucky/happy ETS patients have a number of formal avenues to "spread the joy", but those who did not have good outcomes have only a self-funded Internet message board. Do a Google search on hyperidrosis or blushing cures and you'll get page after page of lavishly funded websites littered with glowing testimonials. Our puny little forum is but a whisper drowned out by thousands of bull horns that paint a one-sided and dishonest picture of the effects and risks of this surgery.
"Beyond providing a place for the testimonials that the surgeons won't publish, the ETS Reversals and Discussion forum provides links to the mountain of medical research findings that contradict the claims most of the surgeons make regarding the number, frequency and severity of adverse side effects of this surgery.
"Most people considering ETS surgery only hear from patients with happy outcomes. The surgeons make a concerted effort to make sure that remains the norm. And that ain't right. It ain't honest. So, the members of the ETS Reversals and Discussion forum seek to right this wrong, and provide to folks who are considering the surgery the information they won't get from their surgeons."
ETS and Reversals Discussion was set up in the early to mid-2000s by American Carole Edward, who lives with hyperhidrosis, so that ETS patients around the world who have had bad outcomes from the surgery can come together online, tell their stories, learn more about their side effects, support each other, discuss possible treatments for side effects, name their surgeons, discuss their legal options, and more. A key mission of the forum is also to WARN prospective ETS patients about the other side of the ETS story - the one the ETS surgeons don't acknowledge and don't want prospective ETS patients to hear.
The forum has members from the following countries:
Australia, New Zealand, the US, the UK, Canada, Ireland, Spain, Sweden, Norway, Poland, Chile, Peru, Thailand, Taiwan, Malaysia...and probably more countries. Users of the forum don't always reveal their nationality.
In response to a happy ETS patient who expressed the view that the forum overwhelmingly contains the stories and experiences of those who have had devastating results from their ETS surgeries, 'CSmess' wrote the following on ETS and Reversals Discussion.
******
"There is a huge amount of published research showing that a very substantial percentage of ETS patients experience disabling side effects that dramatically lower their quality of life and diminish their health. Yet, you will not find a single testimonial from any of these thousands of souls published in any surgeon's brochure or on their websites. Furthermore, while many surgeons provide telephone numbers of past patients to prospective patients, they only hand out the numbers of the happy patients. The unhappy stories are swept under the carpet. Prospective patients get to hear only one side of the story.
"The only place where the voices of the many disabled patients can be heard is on forums like this one.
"In other words, lucky/happy ETS patients have a number of formal avenues to "spread the joy", but those who did not have good outcomes have only a self-funded Internet message board. Do a Google search on hyperidrosis or blushing cures and you'll get page after page of lavishly funded websites littered with glowing testimonials. Our puny little forum is but a whisper drowned out by thousands of bull horns that paint a one-sided and dishonest picture of the effects and risks of this surgery.
"Beyond providing a place for the testimonials that the surgeons won't publish, the ETS Reversals and Discussion forum provides links to the mountain of medical research findings that contradict the claims most of the surgeons make regarding the number, frequency and severity of adverse side effects of this surgery.
"Most people considering ETS surgery only hear from patients with happy outcomes. The surgeons make a concerted effort to make sure that remains the norm. And that ain't right. It ain't honest. So, the members of the ETS Reversals and Discussion forum seek to right this wrong, and provide to folks who are considering the surgery the information they won't get from their surgeons."
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