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This page has been set up to allow ETS patients, unhappy with side effects, to have access to skeleton letters, review recommendations and addresses of Surgical Review Societies. In Australia, a group of us have written to the Australian Medical Boards and ASERNIPs, a surgical review group, and have since been in regular contact with them. At this point there will be a meeting in Sydney during April 2004 for Australian patients who are unhappy with their side-effects. Together we will work together in Australia to create awareness. In Britain there is a group who will assist any British people who would like to complain of their side effects, as there is in Sweden. At this point there is just one letter written by Meg and review recommendations written by Madonna. Of course the review applies to Australia, but shows how a review should be written.
This a letter to an editor, written by Dr Teleranta and Dr Lin, in response to Dr Reisfeld. The reason i've posted it is because it's an excellent indicator that side effects do exist.
The attached ETS review recommendations were sent by Madonna to the Medical Board VIC, AUSTRALIA.
Endoscopic Thoracic Sympathectomy -
Endoscopic Thoracic Sympathectomy (ETS) is being marketed and routinely performed in Australia for facial blushing and hyperhidrosis, seemingly without adequate patient screening, follow up, disclosure of side effects or surgeon expertise.
ETS Marketing -
In 1998 the surgical procedure Endoscopic Thoracic Sympathectomy (ETS) was featured on Channel Nine’s Good Medicine Program as an effective treatment for palmar or generalized hyperhidrosis and facial blushing. A follow up fact sheet entitled “Blushing” was posted on the ninemsn.com web site of Good Medicine and contained patient testimonials. Hundreds of Australians subsequently contacted the two surgeons featured on the program or sought a local doctor performing ETS.
Patient Pre-Screening -
In brochures, doctor emails and verbal advice patients are commonly given the following information from surgeons performing ETS:
Many patients are not advised about non-surgical treatments nor requested to rule out other physical causes in blushing and sweating.
Evidence of patient Dissatisfaction -
Good Medicine removed the “Blushing” fact sheet from their web site in April 2002.
The Melbourne Centre for Hyperhidrosis and Facial Blushing have recently updated their web site now acknowledging that side effects do occur for radical underarm sweating surgeries and have changed from the cutting to the clamping method.
Satisfaction with the side effects of ETS diminishes over time, predominantly due to the persistence of compensatory sweating.
Facial Blushing -
Non-surgical remedies such as Cognitive Behavioural Therapy (CBT) and/or medication should be a pre-requisite as the cognitive processing involved in social phobias such as fear of blushing cannot be cured by ETS. Possible underlying conditions such as Body Dismorphic Disorder need to be ruled out as such blushing may not be as noticeable to others as some patients imagine. Anti-anxiety medications should also be mandatory. Given a blushers hypersensitivity about physical appearance, the impact of side effects of dry facial skin, noticeable compensatory hyperhidrosis, facial swelling and increased facial flushing have not been considered by ETS surgeons.
Patients should be fully informed that:
Hyperhidrosis -
Medical testing to rule out all possible causes of sweating (eg thyroid disorders) should be mandatory. Those we seek ETS for palmar HH only may be extremely dissatisfied with ETS due to CS. The T2 ganglia is also cut for palmar hyperhidrosis.
ETS Side Effects are not adequately disclosed or are often downplayed by doctors:
Doctors do not adequately explain or disclose all ETS side effects: It is misleading to inform patients that only 2% will develop severe compensatory sweating since:
It is misleading to inform patients that should they develop compensatory sweating, it usually diminishes over time, since:
In a study by Fredman B, Zohar E, Shachor D, Bendahan J, Jedeikin R.. Surg Laparosc Endosc Percutan Tech 2000 Aug;10(4):226-9 results showed:
Postsurgery, severe compensatory sweating was experienced in 90% of patients (P < 0.0001). The sites of compensatory sweating were the back (75%), abdomen (51%), feet (23%), groin and thigh (13%), chest (13%), and axillae (8%). Transient whole-body sweating for no apparent reason was experienced in 30% of patients. Thirty-seven patients (11%) regretted having undergone the surgical procedure
It is misleading to tell patients ETS is effective for FB when no studies have shown this to be the case. The Centre for Clinical Effectiveness, Monash Institute of Health Services Research, Monash University, conduct a study into the effectiveness of ETS for Facial Blushing. 6 In response to the question: Is endoscopic thoracic sympathectomy (ETS) an effective treatment option for facial blushing? they concluded: Facial blushing has returned in some Australian patients post ETS. Some doctors now believe that the T1 ganglia, not the T2 which is routinely cut/clamped for FB, is responsible for FB.
Many doctors have changed to the ESB clamping method which is considered to be theoretically reversible in the first 3-6 months only.
Patient Follow Up -
To date no Australian doctors performing ETS do regular comprehensive patient follow ups. They continue to quote positive results, dismiss side effects as unrelated and isolated incidences or refer those with side effects post ETS elsewhere. One doctor even referred a patient to a psychologist when she reported facial burning and flushing, yet never conducted any psychological pre-screening before performing the surgery. Some patients have reported feelings of isolation, depression and thoughts of suicide due to post ETS side effects.
Based on a literature review and survey of Australians and Australian neurosurgeons who have received many requests for ETS nerve graft reversal surgery an urgent review of ETS needs to be conducted so that: ETS is viewed as a drastic last resort measure in treating conditions such as hyperhidrosis. Physical examinations to rule out other causes and non surgical treatments should be tried first, not merely a first option via GP referral.
The practice and long term effectiveness of ETS in treating Facial Blushing needs to be investigated. Cognitive Behavioral Therapy should be a mandatory prerequisite given the socio-psychological basis of facial blushing and other equally embarrassing side effects of the surgery such as compensatory sweating (CS) which patients cannot comprehend pre-surgery.
Doctors and patients need to be fully educated about the side effect of compensatory sweating and its incidence. Lower body Compensatory Sweating (CS) and upper body anhidrosis will occur in all patients to some degree and has never been quantified. There is no evidence or physiological reason why CS should diminish over time and it is misleading that many Australian doctors inform patients pre-ETS that CS settles down over time . CS needs to be fully explained and graphic images shown so that patients can adequately assess the permanent impact of CS on their quality of life. No studies or known cases of post ETS pregnancies or implications for menopause have been reported.
Doctors should be asked to back up their statistical claims with patient follow up data. While they frequently report success rates, patient satisfaction rates (ie with the side effects) are thus not reflected. This is misleading.
Patient follow-ups should be regularly conducted by an independent body to assess patient satisfaction over time. Timing of studies to allow patients to experience CS over summer should be considered. The trade off in developing side effects for the original (FB/HH) condition should be factored in. As most patients are told CS diminishes over time, initial satisfaction rates with the surgery may not factor in its permanence. There appear to be a significant number of Australian patients who are dissatisfied with the surgery and are seeking legal action.
ETS should not be performed on young children or teenagers where blushing and sweating may be common hormonal /developmental stages they will outgrow.
1 http://www.med.monash.edu.au/healthservices/cce/evidence/pdf/c/541.pdf
2 http://camelot.hiwd.net/customers/hcu/complications.html#effect1
3 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11727092&dopt=Abstract : . Riet M, Smet AA, Kuiken H, Kazemier G, Bonjer HJ , Surg Endosc 2001 Oct;15(10):1159-62 Prevention of compensatory hyperhidrosis after thoracoscopic sympathectomy for hyperhidrosis.
4 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10961751&dopt=Abstract ? Fredman B, Zohar E, Shachor D, Bendahan J, Jedeikin R.. Surg Laparosc Endosc Percutan Tech 2000 Aug;10(4):226-9 Video-assisted transthoracic sympathectomy in the treatment of primary hyperhidrosis: friend or foe Department of Anesthesiology and Critical Care, Meir Hospital, Kfar Saba, Israel.
5 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10961751&dopt=Abstract ? Fredman B, Zohar E, Shachor D, Bendahan J, Jedeikin R.. Surg Laparosc Endosc Percutan Tech 2000 Aug;10(4):226-9 Video-assisted transthoracic sympathectomy in the treatment of primary hyperhidrosis: friend or foe Department of Anesthesiology and Critical Care, Meir Hospital, Kfar Saba, Israel.
http://www.med.monash.edu.au/healthservices/cce/evidence/pdf/c/541.pdf
* this was written by 'Madonna'
Centre for Clinical Effectiveness, Monash Institute of Health Services Research Feb 2001
Department of Surgery, Erasmus University Medical Center, Rotterdam, The Netherlands.
Centre for Clinical Effectiveness, Monash Institute of Health Services Research Feb 2001
this letter was written by Meg to ASERNIP-s {surgical ethical review society}
LETTER TO SAFETY AND EFFICACY REGISTER
Address of Safety and Efficacy Register
ATT:
To whom it may concern,
RE: Review of Endoscopic Thoracic Sympathectomy
I am writing in regard to my concern about the medical procedure Endoscopic Thoracic Sympathectomy (ETS), which is being routinely performed in [country] for sweating and social phobia.
This apparently 'minimally-invasive' procedure was heavily advertised on Channel 9 Good Medicine program from 1999 to 2000 and on 'A Current Affair' in 2001 as a simple procedure with few side effects. The surgery involves cutting and removing part of the sympathectic nervous system. Most surgeons will remove T2 ganglia for blushing and palmar hydrosis, but the method varies depending on the surgeon's preference. This in itself is concerning, due to the instability of the method used according to current new scientific findings.
Some of the permanent side effects not mentioned by surgeons have included severe compensatory sweating: affect on cognitive processes; delayed physical reactions; fatigue and depression.
I, and many other ETS patients have informed our surgeons of the latter side effects, and have been met with vague responses, namely that we have been "imagining" them. At no time were we informed of the possibility of mental and physical fatigue as a result of having the ganglia removed. It has so chronically affected our lives that some of us have had to resort to a Reversal operation as our only hope. The Reversal is a procedure whereby a graft, namely the sural or intercostal, is grafted from T1 to the next viable ganglia to act as a tube and allow axoplasm migration.
Since my Reversal I have set up a web site to give information to other sufferers of ETS/ESB-c side effects at http://www.ets-sideeffects.netfirms.com. This site may give you an idea of the suffering and the lengths patients have gone to to let others know about side effects.
ESB-c (clamping) is now being offered by one surgeon atleast in Australia. This change in method, rather than performing ETS (cutting), could indicate patient dissatisfaction. However, I have discovered ESB-c can cause the same side effects and there is also a large possibility reversibility may not occur, even if the clamps are removed. Due to the considerable pressure of the clamps on the nervous tissue it prevents nerve signals from passing through the tissue, due to the blocking of calcium/potassium/sodium channels, which nerves use to transmit electricity. This pressure over time (possibly only one day or two) will destroy the nerve cells and leave a dead patch of scar tissue beneath the clamps. In order for the nerve cells to survive, a constant flow of fresh blood is required. The pressure from the clamps prevents any blood flow from getting to the nerve cells to maintain the life of the cells. The surgeons know if the clamps are left for too long, patients may have to resort to a conventional Reversal using a nerve graft. At this time the Reversal costs approximately $30,000 AU, dependant on the surgeon. Obviously you can understand the enormous emotional and financial stress placed on the patients simply because they have not been warned of possible effects. This is why this issue has to be urgently addressed.
Aside from the obvious emotional, physical and financial effects ETS/ESB-c can have on patients it must be added seven people have now died as a result of surgery complications, most recently in the Carlanderska Centre in Sweden. The Carlanderska Centre has now suspended all ETS operations until an investigation is complete. The surgeons have now moved their practice to Harley Street in London. The point of raising this issue is that the consequence of possible death has to be seriously addressed when patients are meeting with their surgeons for the initial consultation, which, judging by patient observation, is not being adequately performed.
I have attached two letters to the Editor, both published in well know Medical Journals outlining concerns about side effects and ETS. I have also attached ETS review recommendations written by a fellow patient.
I look forward to hearing your response regarding the urgent review of this highly marketed procedure, with little consideration of patient selection and an increasing incidence of severe side effects.
Thank you,
[signed]
LETTER TO THE EDITOR OF BRITISH MEDICAL JOURNAL BY DR PETER DRUMMOND
This is a letter/article published in the British Journal of Dermatology on ETS and its side-effects. He basically cautions people to not choose ETS for sweating and blushing, due to CS.
The title of the paper is:
Drummond PD. A caution about surgical treatment for facial blushing. British Journal of Dermatology 2000; volume 142: pages 194-195.
A caution about surgical treatment for facial blushing
SIR, The fear of blushing can become so problematic that it limits the range of activities in which the blusher is willing to participate, and occasionally develops into full-blown social phobia. Recently endoscopic transthoracic sympathicotomy has been publicized in this Journal(1) and elsewhere(2,3) as a solution for chronic blushing. Short-term results from this procedure were positive,(1-3) and few distressing side-effects were encountered. However, the benefits of surgery must be balanced against the risk of developing post-surgical complications, primarily compensatory sweating and pathological gustatory sweating and flushing. These conditions seem almost to be the rule rather than the exception. For example, gustatory sweating was reported by 47% of 352 patients who were followed up by questionnaire or clinical examination a median period of 16 years after endoscopic transthoracic sympathectomy for palmar hyperhidrosis.(4,5) In this series, patient satisfaction declined from 95.5% initially to 66.7% when patients were questioned many years after the operation.(5) In fact, compensatory and gustatory sweating were the most frequently stated reasons for dissatisfaction with the surgical outcome. The incidence of gustatory sweating was lower (12 of 72 patients) in another series,(6) but all patients except one suffered from compensatory sweating elsewhere in the body. Physiological assessment of gustatory sweating would probably have revealed a higher incidence than self-report in this study. Gustatory sweating takes time to develop; a patient who initially is satisfied with the surgical outcome may later regret having the operation when autonomic disturbances appear.
Pathological gustatory sweating and flushing can develop after injury to preganglionic cervico-thoracic sympathetic fibres, an unavoidable consequence of resecting that part of the sympathetic chain. The mechanism of this abnormal response is uncertain; conceivably, though, regeneration of injured salivatory fibres or collateral sprouting from nearby intact fibres creates aberrant connections between salivatory fibres and denervated vasomotor and sudomotor neurons in the superior cervical ganglion.(7) Commands to salivate would then be translated into commands to sweat and flush in the distribution of sympathetic denervation. Cross-innervation lower down in the stellate ganglion can also produce unusual and potentially distressing autonomic disturbances in the sympathetically-denervated arm (e.g., piloerection while eating).(8)
Interrupting the sympathetic pathway to the face destroys the neural circuitry which controls flushing to heat and blushing to emotional events,(9) and may therefore alleviate anxiety about blushing. However, since inappropriate facial sweating and flushing while eating can be just as distressing as anxiety about blushing, most patients who opt for the surgical procedure may be little better off in the long term. At present there is very little evidence to show that those most likely to pursue surgical treatment for blushing actually blush more readily or intensely than other people. In fact, changes in facial blood flow during acute embarrassment seem to be unrelated to ratings of the self-reported frequency of blushing.(10,11) On the other hand, self-consciousness and fear of blushing correlate well with subjective estimates of blushing frequency and intensity.(10,11) In this respect blushing differs from palmar hyperhidrosis, the usual indication for endoscopic transthoracic sympathectomy; sweaty palms are far easier for the patient to detect than blushing, which often is just a worrying suspicion not substantiated by fact.
If the source of the patient's problem is anxiety about blushing rather than blushing per se, anxiety would be a more appropriate target for treatment than permanently eliminating the normal regulation of facial blood flow and sweating. Cognitive-behavioural and drug therapies help patients with social phobia to control anxiety,12 and should thus be considered the treatments of choice for patients with a fear of blushing.
Peter D. Drummond, School of Psychology, Murdoch University, 6150 Perth, Western Australia
References (1) Drott C, Claes G, Olsson-Rex L, Dalman P, Fahlén T, Göthberg G. Successful treatment of facial blushing by endoscopic transthoracic sympathicotomy. Br J Dermatol 1998; 138: 639-643. (2) Telaranta T. Treatment of social phobia by endoscopic thoracic sympathicotomy. Eur J Surg 1998; 164 (Suppl. 580): 27-32. (3) Yilmaz EN, Dur AHM, Cuesta MA, Rauwerda JA. Endoscopic versus transaxillary thoracic sympathectomy for primary axillary and palmar hyperhidrosis and/or facial blushing: 5-year experience. Eur J Cardio-Thorac Surg 1996; 10: 168-172. (4) Zacherl J, Huber ER, Imhof M, Plas EG, Herbst F, Fugger R. Long-term results of 630 thoracoscopic sympathicotomies for primary hyperhidrosis: the Vienna experience. Eur J Surg 1998; 164 (Suppl 580): 43-46. (5) Herbst F, Plas EG, Fugger R, Fritsch A. Endoscopic thoracic sympathectomy for primary hyperhidrosis of the upper limbs: a critical analysis and long-term results of 480 operations. Ann Surg 1994; 220: 86-90. (6) Lai YT, Yang LH, Chio CC, Chen HH. Complications in patients with palmar hyperhidrosis treated with transthoracic endoscopic sympathectomy. Neurosurg 1997; 41: 110-113. (7) Drummond PD, Lance JW. Mechanisms of normal and abnormal facial flushing and sweating. In PA Low (Ed.) Clinical autonomic disorders. (2nd edition). Philadelphia: Lippincott-Raven. 1997; 715-726. (8) Herxheimer A. Gustatory sweating and pilomotion. Br Med J 1958; 1: 688-689. (9) Drummond PD, Lance JW. Facial flushing and sweating mediated by the sympathetic nervous system. Brain 1987; 110: 793-803. (10) Mulkens S, de Jong PJ, Bögels SM. High blushing propensity: fearful preoccupation or facial coloration? Pers Indiv Diff 1997; 22: 817-824. (11) Drummond PD. The effect of adrenergic blockade on blushing and facial flushing. Psychophysiol 1997; 34: 163-168. (12) Stravynski A, Greenberg D. The treatment of social phobia - a critical assessment. Acta Psychiat Scand 1998; 98: 171-181.
A note that this material provided if used is subject to the approval of Blackwell Publishing. The contact details are: Lindsay Doyle
E: lindsay.doyle@blacksci.co.uk
A link to the Synergy website is http://www.blackwell-synergy.com/servlet/useragent?func=showHome
ENDOSCOPIC THORACIC SYMPATHECTOMY FOR TREATMENT OF FACIAL BLUSHING
This is a report written by Omar Ahmed Phd of Monash Medical Centre pointing out bias in four case series related to ETS and a need for a well controlled trial. This is an excellent report pointing out the need for a Surgical Review Society to perform an unbiased controlled trial.
http://www.med.monash.edu.au/healthservices/cce/evidence/pdf/c/541.pdf
ENDOSCOPIC THORACIC SYMPATHECTOMY AND ALTERED AUTONOMIC NERVOUS SYSTEM RESPONSES.
This report was written by Madonna, a Phd student.
Endoscopic Thoracic Sympathectomy (ETS) is a surgery commonly performed for social phobias such as blushing and sweating and involves cutting the ganglia (eg T2,T3) of the sympathetic chain. This surgery is performed based on the belief that the sympathetic nervous system in such individuals is overactive and too responsive to social stimuli.
An imbalance between the two autonomic systems; sympathetic and parasympathetic can result from ETS and create a parasympathetic dominance. Dr Seligman found that when faced with stress stimulation, parasympathetic dominance shows itself as depression and withdrawal. People who react this way become passive, give up and experience feelings of relaxation, sleepiness, depression and hopelessness. While there has been a lot of focus on the more obvious physical side effects of ETS, this parasympathetic effect seems to have been ignored despite the fact that stress itself has been defined as a chronic imbalance of the autonomic nervous system (sympathetic-parasympathetic). A question I have yet to find an answer to is: how does the body react to stress after ETS when a fight response is needed? Eg To defend oneself in an argument or stressful situation.
This imbalance has implications in regard to altered emotional responses, given that research shows we need our bodies to feel the intensity of emotions. According to James theory bodily changes are what makes emotions ‘emotional’, since emotions get their intensity from autonomic arousal. Spinal injury patients reported diminished emotions and animals showed impaired avoidance responses after sympathectomies. The patients refer to a ‘cold mental form of anger” i.e. they felt less intensely - with the mind and not the body. Creative passionate people; artists, musicians, actors, and athletes may need and thrive on such emotional intensity – both positive and negative.
One way ETS may create this imbalance in the autonomic nervous system is by blocking or reducing dopamine – a sympathetic nervous system transmitter. When dopamine (SNS neurotransmitter) levels are lowered, as seemingly after ETS, elevated serotonin levels are usually seen. The serotonin becomes an antagonist. Pubmed studies have found these very imbalances and increased serotonin levels in rats following cervical sympathectomies. Stressed animals also had too much serotonin. It seems that without adrenaline to balance the serotonin side effects, the serotonin becomes a major antagonist.
Dopamine plays a role in the enjoyment of activities. Low levels of dopamine may lead to loss of enjoyment in daily activities. Dopamine is also converted in the body into the hormone norepinephrine and plays a role in energy levels. Low levels also seem to have an effect on a person's general mood. Anti –depressants such as Ritalin often raises low serotonin levels to balance with the dopamine. Dopamine plays a role in enjoying activities. Low levels of dopamine may lead to the feeling that nothing you do is enjoyable anymore. Dopamine is also converted in the body into the hormone norepinephrine. It also plays a role in energy levels. When norepinephrine is released into the body it speeds up the heart, opens the lungs up, and triggers the increased burning of food for energy. Low levels of norepinephrine can cause sluggishness and physical and mental stress. Low levels also have an effect on a person's general mood.
It would appear illogical for doctors to perform ETS to treat addictions because low levels of dopamine have been found in people with addictions. Experiments designed to test whether an increase in dopamine receptors could prevent drug abuse have proved effective. ETS would most likely cause a decrease in dopamine because it is a sympathetic nervous system neurotransmitter - the very system doctors cut/clamp ( I even have a renewed craving for cigarettes since ETS – no doubt my body trying to raise dopamine levels.
Raised levels of serotonin may lead to the development of Serotonin Syndrome. Some symptoms of too much serotonin include flushing of the face and neck, a constant headache, abdominal cramping, wheezing, muscle and joint pain all over a foggy feeling, unreal feeling, overwhelming fatigue, problems with concentrating and memory, thinking clear, irritability, panic attacks. Risk factors are unclear, but some trends are becoming apparent as more cases appear in the literature. Some researchers have suggested that peripheral vascular disease may lead to elevated serotonin levels. Similar imbalances occur in other dysautonomias or autonomic system disorders such as Parkinsons, Chronic Fatigue Syndrome and Gulf War Syndrome. (of which parasympathetic dominance is theorized to be the cause).
An imbalance between the two autonomic systems; sympathetic and parasympathetic can therefore result from ETS and possibly create a parasympathetic dominance which may lead to depression.
ETS has created an imbalance by blocking or reducing sympathetic nervous system transmitters such as dopamine and therefore possibly increasing levels of serotonin (this is not good). After coming to this conclusion I then found Pubmed studies where these very imbalances and increased serotonin levels were found in rats who had sympathectomies. Stressed animals have too much serotonin. Risk factors for the development of Serotonin Syndrome are unclear, but some trends are becoming apparent as more cases appear in the literature. Some researchers have suggested that peripheral vascular disease may lead to elevated serotonin levels. Something I read in relation to the mix up and/or neurotransmitter imbalances sounds familiar- “the brain has no idea what the body is doing”.
Some symptoms of too much serotonin include flushing of the face and neck, a constant headache, abdominal cramping, wheezing, muscle and joint pain all over a foggy feeling, unreal feeling, overwhelming fatigue, problems with concentrating and memory, thinking clear, irritability, panic attacks. Flickering of the eyelid (blepharospasm) is related to this imbalance. Such imbalances have been found in other autonomic system disorders such as Parkinsons and Chronic Fatigue Syndrome (of which parasympathetic dominance is thought to be the cause).
Serotonin Syndrome:
http://www.lauralewis.com/asklaura_0700a.htm
As for the adrenaline – Without adrenaline to balance the serotonin side effects, the serotonin becomes a major antagonist.
* thanks to Madonna
ANOTHER LETTER TO THE EDITOR WILL BE PUBLISHED SOON AS WELL AS ADDRESSES OF VARIOUS SURGICAL REVIEW SOCIETIES.