VerySweatyBetty.com

The third in our series of guest blogs from our forum members.  Today it’s from Vicki.

My Hyperhidrosis Story – Vicki
I’m Vicki – 29 and USED to be a sufferer of Palmar (hands), Plantar (feet) and Axillae (underarm) Hyperhidrosis but after having ETS surgery I am now a Generalised sufferer (every part of my stupid body). Here’s a shortened down Day in The Life of a Hyperhidrosis Sufferer. I hope you enjoy or find it an interesting read.

Oh god, its only 3am and not only is my face stuck to the pillow (and no it’s not slobber), but my back has drenched the sheet from the mounds of sweat. But oh no, its bad enough that the sheet is wet, but now it’s cold due to being so wet. My feet are hanging out in the ice cold to try and calm the sweating, my body is underneath the duvet to try and keep warm my hair is stuck to my face so I reach for a bobble and some grips to tie and grip it back…. finally after an hour, I drift back to sleep..

Alarm goes off at 6am, as per usual my entire body is soaked even though the room is freezing (I can’t win). Go to bathroom, have a wash etc etc. Go back to bedroom, start to apply make up to cover up my badskin due to sweating, not without my forehead and upper lip sweating making an unwelcome appearance, just in time to run my newly applied foundation….don’t know why i bother. The stress of this then starts the back of my knees off. Just standing here wanting to apply a bit of foundation causes the waterwork choas. So it goes on, my heart rate increases as I worry about the running of the tap on the back of my knees, so as not to be left out, my feet and armpits kick off! Yeah cheers for that BODY!!!

I rush to find some cotton socks/pop socks, tights….well anything to cover my feet up which have also joined in on the party. By this time, I have 10 minutes to get changed and let my dog out!

Phew, 7am set off for work. Seat Belt got stuck for a split second, so off started the armpits just to show their frustration….why, is beyond me! Not as if they can do anything about the seatbelt! Get to work, set up the nursery but as usual the water situation doesn’t like much movement, so off it all goes! Stand in kitchen and prepare the breakfast ensuring to keep drying my hands (that knife can get quite slippery in a wet hand)!

Oh no, a child wants to hold my hand…..quick quick hands are wet, think……decide to hold out the one finger and quickly sit down so not questions can be asked why 1. i put one finger out and 2. its wet!

Finish work, go to an appointment. As usual the quick transition from workplace to car transpires in an all over sweat. Calm down on the way. Get to appointment but as always the waiting room is roasting. Seriously I’m sure I’ve walked into a Sauna! Sit by the door to be able to get some fresh cold air. Woman complains about door being left open, whilst watching me dab tissue on my head and clench it in my hands.

Get home, stroke the dog but not without coming away looking like her as her hairs have stuck to my hands!! Start getting ready for a night out. Oh here goes, as soon as I want to apply make up the taps are turned on!!! Same old cycle just a different day! Make sure I find those tights!!! Get myself out but I dont know why I bother to have a nice fringe as I only spend most of the night with tissue stuck to my forehead (and I have pics to prove it)! Oh hang on, where are those grips I put in my bag in preparation for this happening!

It could be Summer or Winter but you will always find me in socks, tights or popsocks as they seem to be the only thing that will give the sweat a run for its money (on rare occasion). I shouldn’t have to cover my poor feet all day every day, 365 days of the year but if its the one and only small thing, which helps to calm my Hyperhidrosis, then that’s what i’ll have toi live with for the rest of my life. I’ll be glad when I’m a granny and its normal to wear pop socks all the time

Forum link

How Compensatory Sweating works:

The current train of thought is that our own inbuilt thermometer is faulty. This is called the Hypothalamus and it’s tucked away in the brain. This is what causes us to overheat. When the body’s temperature rises by 4 degrees C, we become disorientated and confused. By the time we reach 7 degrees C, we’d be dead. Because the body is such an amazing feat of natural engineering, we have an inbuilt sprinkler system to prevent us from overheating and to keep us alive. This is where the sweating comes from. When you block off any area of sweating, that’s all you’re doing. You’re not cooling yourself down. As you’re still hot, you’ll still be sweating until you cool down, it’s just that the sweat will appear in other areas and it’ll take longer to cool down as your sweating is limited. Blocking sweat is not the best way of dealing with it, although we all need to block in the odd area or two – ie underarms etc. It’s always a far better idea to soak up and disguise sweat than to block it.

CS as a result of ETS and Generalised Hyperhidrosis:

The main places ETS people suffer is down their back, torso, groin and legs. I would suggest products like laulas undershirts and polo shirts, www.sweat-help.com and Wrapps www.coolwrapps.com. Both of these products will deal with soaking up sweat by clever use of fabrics. I use both products and they certainly make life easier for me. Wrapps are also increasingly used by sportsmen and women, musicians etc as well as HH sufferers.

Please feel free to visit the site and dive into the forum conversations – or even just keep an eye out for competitions (we get to give away lots of free products) and hints and tips on disguising and dealing with your sweating.

I want to personally thank a new member for allowing us to post her story.  She knows how important this is for us all in raising awareness on this awful skin disease, that brings us all misery every day of our lives. 

This is a very moving story of inspiration, bravery and courage. 
We want to thank you from the bottom of our hearts….

Anne and Beverly xxx

If you want to join in our cause on, “Raising Awareness” Join the cause, we have a section in the forum for this HAC, Hyperhidrosis Awareness Campaign, good things are happening. 

I always say lots of little voices can make one big one.  If you want to join our cause then please send your story to our very own Beverly at betty@verysweatybetty.com   She will be glad to post it on our front page and if requested all will be confidential.  Thanks for helping us here at Very Sweaty Betty, your friendly sweaty support group.

Vicki’s story,

Doctor ‘a risk’ after blundering during fatal operation to cure woman’s excessive sweating

16 February 2010

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Louise Field field died from a lack of blood to the brain following an operation to cure excessive sweating. An anaesthetist who admitted making mistakes during a fatal operation to cure a woman’s excessive sweating poses a ‘continued risk’ to patients, a hearing has been told. Louise Field, 27, died two days after the operation, during which Dr Wasfy Yanny failed to treat her dipping oxygen levels. The trainee accountant had chosen to undergo pioneering treatment – which involves disabling nerves behind the ribs – to reduce embarrassing sweating on her hands and feet. Her oxygen levels fell after vascular surgeon Dr Michael Orminston accidentally punctured her lung and pumped carbon dioxide into her stomach, during the operation the Bupa Hospital in Harpenden, Herts in 2002. When Mrs Field was rushed to another hospital, Dr Yanny gave no indication she might have neurological problems, which was likely given her lack of oxygen, the General Medical Council was told yesterday. He also failed to inform the specialist registrar at Hemel Hempstead General Hospital about the drugs given or provide a anaesthetic chart. Dr Yanny then failed to apologise to Mrs Field’s worried family, saying that ‘these things happened.’

Mrs Field failed to come round after the operation, but her parents Patricia and Philip Green were initially told she would be fine. It was not until the following day that another doctor spotted a blown pupil and sent Mrs Field for a brain scan – which revealed probable brain stem death. After further tests Mrs Field’s life support machine was switched off. A post mortem found she died from a lack of blood to the brain. Dr Yanny and Dr Orminston have both been found guilty of ‘below the standard expected of a medical practitioner.’

Louise Field

‘After the operation, Dr Yanny did not take sufficient steps to rectify problems and compounded the errors by failing to undertake a proper hand over, and by failing to communicate properly with the patient’s family.’ She said the panel had to be confident Dr Yanny would not do the same thing again. ‘[But] in our submissions there is no material before the panel which could satisfy it that Dr Yanny’s behaviour would be different if the same situation arose again. ‘There is a continued risk to patients.’

Nurse who treated woman who died after operation to cure heavy sweating ‘was a novice’

23 June 2009

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A nurse in charge of an operation which left a fit and healthy woman brain dead was a novice who had never performed the procedure before, a hearing heard today. Louise Field, 27, died after a surgeon punctured her lung during an operation to cure her excessive sweating, the General Medical Council has heard. But theatre sister Helen Parker was new

Louise Field

Vascular surgeon Mr Michael Ormiston and anaesthetist Dr Wasfy Yanni are accused of making a series of blunders at the BUPA Hospital, Harpenden, Herts, on March 20, 2002. Sarah Plaschkes, for the GMC, asked the nurse if she had any conversation with Dr Ormiston prior to the procedure. Miss Parker said: ‘The morning of the procedure I asked Dr Ormiston if he required anything specific or instrumentation. He said no.’ Ms Plaschkes added: ‘Apart from asking if there was anything specific he needed, was that the extent of the conversation you had with him?’ Miss Parker answered ‘If I had wanted to know anything before then I would have telephoned Dr Ormiston the day before. ‘I think I probably said I haven’t undertaken that procedure before.’ It was claimed that Ormiston had failed to properly brief his scrub nurse to minimise the risks to Mrs Field.

The surgeon successfully deflated the patient’s right lung in order to burn through the nerve ending behind the rib cage. But problems occurred with the left lung when he punctured the wrong cavity and pumped carbon dioxide into her stomach and abdomen, it is claimed. When Miss Parker was shown the deflated right lung on the theatre television screen she failed to recognise a problem. ‘That was your first experience of ever seeing a deflated lung on a TV monitor wasn’t it?’ Ms Plaschkes said. ‘Yes,’ the nurse admitted. ‘It looked very similar to the right side.’ A few minutes later Mrs Field’s fingernails turned blue and the monitors started beeping, the panel was told.

Miss Parker explained: ‘I recall remarking that the fingernails were tinged blue. Her oxygen saturation levels I noted had gone down. ‘It suggested that the CO2 levels were low and the alarms were going off to indicate that.’ At this point Miss Parker became ‘frantic’ with worry, the panel heard. ‘I probably wasn’t looking very sedate and serene, and yes I would have been shouting rather quickly for some assistance. ‘I took the drapes off and I noticed her abdomen was distended,’ she added. High levels of carbon dioxide gas had leaked into Mrs Field’s chest and stomach, creeping up to her neck and face. Her skin was bloated and crackly to the touch, the GMC has heard. But the inexperienced sister had never seen anything like that before, the hearing was told. Miss Plaschkes asked: ‘At that time did you have any idea why her abdomen would have been distended?’. ‘No,’ she answered. ‘Had you ever seen anything like that before?’
‘No,’ she added. ‘I’m not experienced enough to say how extensive it was but it was on her face and chest. ‘It was when you felt it that you had that crinkly feel.’ Mrs Field stopped breathing during the operation and her brain was deprived of oxygen, killing the brain stem and all function, it is claimed. Miss Parker admits seeing the anaesthetist Yanni administer drug Mannitol to the patient to minimise the damage. Yanni faces charges he failed to tell medical staff or the family about the possibility of brain damage to the patient and covered up his administration of drugs.

Mrs Field, of Wheathampstead, Harpenden, was transferred to the intensive care unit at Hemel Hempstead General Hospital on the afternoon of her operation, March 20, 2002. It was not until the following day when another doctor recognised two blown pupils indicating brain damage, the GMC was told. The trainee accountant was transferred to a specialist neurological hospital in Queens Square, London, where her life machine was switched off on March 22. Ormiston and Yanni face a total of 42 charges relating to the inappropriate treatment of Louise Field.

A postmortem revealed Louise died from a lack of blood supply to the brain caused by damage to her lungs. A pathologist found a puncture wound to her left lung, the hearing was told. Ormiston punctured the lung with an endoscopic tube by mistake before pumping high levels of CO2 through the hole into her stomach, the GMC allege. Yanni failed to stop the surgery despite dangerously low oxygen levels. Ormiston, and Yanni both deny misconduct.

‘Fit and healthy’ woman died after operation in Bupa hospital to cure heavy sweating

16 June 2009

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A ‘fit and healthy’ young woman was left brain dead after a pioneering operation to reduce her excessive sweating went catastrophically wrong, a medical panel has heard. Louise Field, 27, suffered severe brain damage when doctors accidentally punctured her lung and pumped gas into her stomach, the General Medical Council heard. She died two days later. Vascular surgeon Dr Michael Ormiston and anaesthetist Dr Wasfy Yanny face a catalogue of charges arising from the bungled operation at a Bupa Hospital in Harpenden, Hertfordshire.

Dr Ormiston, who had carried out the operation a handful of times, first punctured the keen sportswoman’s lung with a needle then pumped carbon dioxide into her stomach. Dr Yanny failed to take action when Ms Field’s oxygen levels dropped dangerously low and should have realised this damaged the patient’s brain, the hearing was told. Ms Field had

Louise Field

Sarah Plaschkes, for the GMC, told the hearing: ‘She was born on February 18, 1975, and was to die tragically on March 22, 2002, aged just 27. ‘She was fit and healthy and played a lot of sport however she was embarrassed by excessive sweating of the hands and feet. ‘Around the end of 2001, she became aware of an operation that could potentially cure this embarrassing condition and went to see her GP as previous medication had not worked.’ Ms Field chose to have a ‘bilateral endoscopic transthoracic sympathectomy’ – an operation to suppress nerves behind her left and right ribs. The procedure involved a key hole incision to deflate her lungs one at a time to access the hard-to-reach point.

Dr Ormiston performed the surgery at the Bupa Hospital, Harpenden, now called the Spire Harpenden Hospital. It was the first time this procedure had been done at the hospital and only the fifth or sixth time it had been performed by Ormiston, the hearing was told. The operation was successful with the right lung but problems occurred with the left lung, the panel heard. Ms Plaschkes explained: ‘The anaesthetic chart completed by Dr Yanni shows that for a substantial part of this procedure the patient’s oxygen saturation was at about 85 to 90 per cent. ‘It is the GMC’s case that this saturation level should have concerned both the anaesthetist and the surgeon.

‘An oxygen saturation of that level is out of the ordinary and it is the council’s case that unless the anaesthetist was clear about the cause of that low oxygen saturation and was satisfied it was safe to continue to the left side. ‘Both the anaesthetist and the surgeon should not have continued and the surgery should not have taken place on the patient’s left side.’ Dr Yanny should have told Dr Ormiston to abandon the surgery, the GMC claimed. But Dr Ormiston placed a needle in the wrong section of the left lung, then punctured it with an endoscopic tube. The surgeon then pumped more than three litres of carbon dioxide into the misplaced tube. Dr Yanni ignored alarms alerting him to the patient’s dropping oxygen levels and told the surgeon to continue, the panel heard. Ms Field turned blue and her entire body swelled up from the gas in her stomach and abdomen. ‘By this stage clearly something or things were amiss and undiagnosed,’ said Miss Plaschkes.

‘Theatre staff noted that the patient’s abdomen became distended. Her face and chest were swollen and felt bubbly to the touch. ‘She had developed gas under the skin.’ Ms Plaschkes said the doctors made a ‘grave error in judgement’ in continuing with the operation. When the patient stopped breathing, Dr Yanny administered drugs to ease any damage to her brain and attempted to take Mrs Field off the ventilator, the GMC heard. Ms Plaschkes added: ‘It is our case that Dr Yanny must have been aware that this patient had suffered a period of hypoxia – a lack of oxygen to her brain – and low blood pressure, which was sufficient for this patient to sustain brain damage.’ Ms Field would not wake up after the botched operation so was transferred to Hemel Hempstead General Hospital’s intensive care unit. It is claimed both doctors then failed to tell the family or staff at the second hospital about the risk of brain damage. When doctors assessed her on March 21 they discovered her pupils were dilated and unresponsive to light. She was transferred to a specialist neurological hospital in London where tests revealed she was brain dead as a result of the operation.

Ms Field’s life support machine was turned off on March 22. Dr Ormiston faces 17 charges relating to the botched operation while Dr Yanny faces 25 allegations. Dr Ormiston, from St Albans, Hertfordshire, and Dr Yanny, from Harpenden, Hertfordshire, both deny misconduct. The hearing continues.

I’ve been reading information given on the NHS Choices website regarding ETS. They have renamed it VATS – Video Assisted Thoracic Sympathectomy. It’s exactly the same outcome as ETS. Please note below they don’t actually mention death (of which there have been far too many) as a possibility…

FORUM LINK opens in new window

VATS – Video Assisted Thoracic Surgery

Video-assisted thoracic sympathectomy (VATS) is the most widely used type of surgery to treat hyperhidrosis. VATS is usually recommended to treat cases of hyperhidrosis that have failed to respond to other types of treatment.

During the procedure, a surgeon will make two small incisions on the side of your chest and remove some of the nerve tissue that runs from your sympathetic nervous system to the affected sweat glands.

VATS can be used to treat excessive sweating of the armpits, face and hands. However, treating excessive sweating of the feet it is not recommended because the operation carries a risk of causing permanent sexual dysfunction, such as impotence. This is because damage to the part of the sympathetic nervous system that runs down the back and into the legs could also damage the nerves that are connected to the genitals.

So far, VATS has been moderately successful in treating hyperhidrosis. However, the operation does carry a significant risk of associated side effects as outlined below.
The most common side effect of VATS is excessive sweating in another part of the body, usually the lower back or upper thighs. This is known as compensatory sweating.

It is thought that almost all people who have the VATS procedure will experience some degree of mild compensatory sweating. However, an estimated 1 in 20 people will develop a more severe form of compensatory sweating. This is more likely to happen if you are obese.
Other side effects of VATS include:

sweating of the face and neck after eating food – this is known as gustatory sweating and it is thought to affect around 1 in 20 people

phantom sweating – an unusual side effect where a person feels like they are about to break out in a sweat but never actually do (this affects just under half of people who have VATS and usually improves with time)

increased sensitivity to cold

dry hands

changes in how things taste

It is unclear exactly how common the last three side effects listed above are, because reports vary widely.

Complications that develop as a result of VATS are much less common. However, one possible complication is known as Homer’s syndrome. This affects one side of the face and makes the eye droopy, which can sometimes make it difficult to open. The affected half of the face is also unable to sweat.

Homer’s syndrome is caused by accidental damage to the nervous system, which may not be possible to repair. It is thought that people who have the VATS procedure have a 1 in 250 chance of developing Homer’s syndrome following surgery.

Other complications of VATS can include:

Air that becomes trapped between the layers of the lung, which can cause chest pain and breathing difficulties. This is known as pneumothorax and it usually resolves without the need for treatment. If treatment is required, a tube can be inserted into the lung to draw the air out.

Post-operative infection – a rare complication occurring in around only 1 in a 1,000 cases.

I’m sure Louise Field’s family would be very disappointed in this, it’s as though nothing has been learned from her (and other people’s) tragic death.

This was written by a friend who suffers from Hyperhidrosis and posted this on our forum for all to see.  Knowell has his own site and writes blogs about living with this condition.
We thank you for letting us share this great story.

Early last week, one of my Indian office mate (Abdulhamid) received a warning letter from our HR that he was untidy and smelly, and threatened to apply salary deduction. While sobbing, he showed the letter to me and mentioned that ‘this is your payoff for all the good things you tried to share and exerted to this company’. With caution I asked him if that was true. He directly told me that he cannot avoid it because he has a sweating problem. Gosh.. only then I knew that somebody right there from our office share the same sweating problem like me!..

Immediately I told to Abdulhamid not to lose his composure; and assured him that I myself will assist in solving this issue. It’s really a long time I tried to bypass my office mates’ negative comments about this condition. Now this is such a relief for me to validate acceptance of our situation.

I wrote a separate e-mail addressed to our Administration and HR manager that they are wrong in labeling Abdulhamid as ‘untidy’. Aside from telling them that their accusation has nothing to do with his work performance, I told them that he did not choose to experience being untidy; in fact he cannot avoid being untidy because of his sweating problem. I told them that he has body and axillary hyperhidrosis, while I have palmo-plantar hyperhidrosis.. Finally i emphasized to them that they have no idea how we suffered trying to adjust with this condition.

After that, I informed to Abdulhamid what I did. I waited if the HR will call us for further reprimand but interestingly, the week almost passed and we never heard anything from them. I asked Abdulhamid for anything and said he never heard anything also, neither the HR opened the topic again as if nothing was circulated..

Whether they will accept us or not, what really matter is understanding the condition which can be possible only by raising the issue into public awareness. An understanding that life has imperfections; but the way we live makes it perfectly wonderful. And a trust that if the situation is beyond our control, we can rest assured with our Creator who has the total control of everything when he said “be still and know that I am the Lord..” I encourage you to please share your similar experiences to reinforce all of us.

http://ehsociety.wordpress.com/

If you are interested in being our guest blog feature for our front page let us know.  You can contact Beverly or Anne on the forum with a private message, all can be confidential.

Hello all,

We have had a member ask a very important question:  Why do you not support people that have had success with their ETS, and help to spread the word?
If you have had a successful ETS and have very few side effects, we would love to hear from you.  Helping others decide on if this is an option for them?  We tend to be on both sides of the fence about this surgery.

I am sorry if we seem to be totally against ETS, were not.   This operation is the last resort for sufferers and over the years has come under the hammer and some very distressing life changing side effects, that have made the sufferer worse than before.   Even speculation where some ETS surgeons were not always telling the whole truth on how this surgery is preformed and the possible side effects.

With all this thrown at you and then my last surgeon I’d seen saying,  “you don’t want this surgery”, prob would not work for your facial, cranial and you could end up with Horners, Raynards and severe CS.  I sweat bad all over already so choose not to travel down this path.   Then researching about this and the horror stories.  Not sure on the stats on how many are successful or went terribly wrong?

It brings up a good point, with all the negativity, there are some happy endings and successful surgeries.  I know several members who have minimum Compensatory Sweating, and are happy with not having sweaty hands and feet.  Then I know many who this has changed their lives for the worst.

Let us share your story.

This could be excellent news for people within the catchment area, I do hope Nicola Roxon comes through for you guys!

BOTOX could be added to the Pharmaceutical Benefits Scheme to help people with excessively sweaty underarms and palms.

Health Minister Nicola Roxon confirmed she was considering subsidising Botox, a move dermatologists fear could result in rogue doctors exploiting the system to treat patients for cosmetic purposes.

The most common use for Botox, or botulinum toxin type A, is to minimise wrinkles and lines by paralysing muscles in the face.

The drug is already listed on the PBS for the treatment of severe spasms and spasticity in elderly patients or for certain medical conditions.

Ms Roxon said her Government had deferred a decision to list Botox, alongside five other medications.

A spokesman for Ms Roxon said the listing was deferred due to “difficult fiscal circumstances” but would be reconsidered when the financial situation allowed.

David Francis from the Australasian College of Dermatologists agreed the PBS listing should be extended to cover patients with excessive sweating, or hyperhidrosis.

“This is a debilitating condition, you-can’t-go-out-of-the-house type suffering,” Dr Francis said.

He said patients struggled with the cost of Botox at $500 or more an ampoule, requiring one ampoule per treatment every six to 12 months.

The only other option for patients is to have an operation to sever a nerve in the neck that causes the sweating, although this carries the risks of any surgical procedure.

Dr Francis admitted there was room for exploitation. “There may be the unscrupulous people who may say they’re treating underarms and using the rest on wrinkles,” he said. “It would be simple to catch doctors who took advantage of the subsidy. Most dermatologists would see no more than one or two patients a year with the condition.”

The Government last week listed seven new medicines and vaccines that would be available on the PBS from April 1 and announced the deferral of listings for the first time.

Ms Roxon said that while there were alternatives for the other five medications deferred, there was no alternative treatment for hyperhidrosis.

The chair of the Australian Medical Association’s Therapeutics Committee, John Gullotta, said the Government should say when it would make a decision about Botox.