FfSo

News from FfSo

FfSo



On this page you kan find both news and gossip. We concentrate on the small things that can be of interest to our members and leave earth disasters and war to TV and radio.

Have you read or heard anything that you think is important to share with other members, please mail or write to us.



2002.12.12
The FfSo site now also in Italian!

Thanks to the work of an Italian friend (Grazie - Paul!) our web site has been translated into Italian.
With Paul's fine work we hope to reach a new audience in Italy.

The Italian version is under construction.

Kjell


2002.10.13
This is a translation of an information letter from the National Board of Health and Welfare in Sweden

The National Board of Health and Welfare
Socialstyrelsens Meddelandeblad 16/2000

Surgical treatment for hand perspiration and other conditions

Increased perspiration – hyperhidros - on the hands.
Increased perspiration on the hands can sometimes just like facial blushing be so extensive that it has almost crippling effects. The cause for this disease is still not completely known. However, there are different methods for treating or compensating the effect of this condition. The methods can be everything from advice about proper hygiene products to psychological advice and even as far as surgery. The person who is faced to make the decision to do the surgery or not should have in mind that the surgery is not without complications and it might leave you with permanent side effect. This information letter is mainly focusing on the surgical treatment.

The letter includes comments that professor Ulf Haglund and Bertil Hamberger did on October 2nd 2000. Furthermore, it includes the result form a survey made by the FFSO. The FFSO consists of people that have had the surgery for hyperhidros.

In extreme cases of hand perspiration and facial blushing when medical treatment is not enough there might be a reason to consider a surgical treatment. The surgery it self consists of an incision in the chest to split the nerve that effects the perspiration function. The method is called sympatikotomi and it has been around for more then 50 years. The method which is called torakotomi was 50 years ago a very complicated surgery where they had to open up the chest. However today it is performed by inserting a small instrument in to the chest and with help of a monitor you can see which nerve to split. Due to the advanced technology the surgery has become less complicated and easier to perform and is therefor now performed more frequent and the patients does not have to wait as long as they would before. The experience of the two different methods shows that you can compare the long-term effect regardless which method was used.

The method called torakotomi has often been successful and it has not led to any amediate side effects. However a considerable time after the incision, side effects like increased perspiration on other part of your body has occurred. A survey done by FFSO shows that a considerable amount of people regrets having the surgery performed at all. The incision is irreversible. The attempt made to repair the nerves has shown only negative results. Because the incision is irreversible the demands on investigating and informing the patients before the incision is very important.

Kammarrätten in Stockholm is referring from a case in June of 1999. The statement states the following: The need of complete information about complications that may arise from a surgery should be more clear and precise. Especially since the surgery is not dealing with a deadly illness it is done only to increase the well being of the patient.
Furthermore, the need of better information is important because the side effect may not occur until some time after the surgery has been performed.
During the years 1990-1997 about 3000 operations has been performed. It has been performed at a limited amount of hospitals in Sweden.

The scientific boards statements

Increased perspiration on the hands can in some cases be motivated to treat with a surgery to increase the quality of the person's life. Furthermore, if no other method is helping it might be the only way.
The surgical method that is being used has in wide range given positive results. However it has in some cases brought permanent side effects and they may occur some time after the surgery. The numbers of permanent side effects are still not high enough to stop using the method. However they should be taken into consideration before the surgery is performed.
Furthermore, before this method is chosen a medical investigation is needed and in which this case the patient information plays a big role. In addition this surgery should only be performed on adults.

Treatment results.

A large amount of international studies shows that an incision on the sympatikotomi nerve gives a very positive result when it come to hand perspiration and also that the side effects are rare.

Risks of complications

In all types of surgical treatments there is a risk of complications during and immediately after the surgery. One obvious condition to minimize the risks is to make sure that the surgeon performing the surgery knows the technology that is being used in the surgery.

Permanent side effects

The method can give permanent side effects that in some cases first will become obvious after some time. One of the side effects might be increased perspiration on different places on your body. Why and how this happens is still unknown. According to the research available about 25-75 of all patients can expect more or less serious perspiration on different places on their body, However, it is also mentioned in the research that 0-10% regrets having the surgery done for this reason. Other documented side effects are the inability to raise the heart rate when working out physically. This has in some cases led to decreased ability to perform your work and daily activities. Some patients also complained of not being able to control their body temperature and it is experienced as very uncomfortable.

Alternative treatments

Sympatikotomi is an irreversible incision and may bring different risks of side effects. So first of all one should look for alternative treatments for this very uncomfortable situation. The first step should be physiological and or medical therapy. There is also since a couple of years ago a non-surgical treatment method, which insists of small injections of the substance called botulinumtoxin. You inject this substance in the areas where the increased perspiration is taking place. However this method has not yet been clinically tested and side effects are unknown. Even if the therapy is not helping the patient it could be wise to wait with the surgical incision and see how far they have come in the research in the new treating methods.

Demands on medical investigation

Under all circumstances a medical investigation should be performed before deciding weather to have the surgery or not.

Age of the patient

The surgery should only be performed on adults. The reason why is because a younger child or a teenagers hormones are still changing and this might effect the amount a person perspires. This is only one of the reasons why an extensive investigation should be done before deciding weather to do the surgery. The surgery should not be performed on person under the year of 20 unless the symptoms are extreme.

Demands on information to the patient

The demand for accurate information is in this case crucial. A difficult case of hand perspiration is a serious but not life threatening condition. The patient obviously wants to be cured however they need to be fully aware of all the risks that come with the surgery. The person responsible for giving the information to the patient must very clearly state all the risks and all possible side effects and it should be done both verbally and written. It should furthermore be done a long time before the incision so that the patient is given reasonable time to consider the decision. The information should include everything both positive and negative outcomes so that they can be prepared. Last but not least the patient should be given possible alternative treatments if there is any.

Responsibility for patient information

The ultimate responsibility rests on the surgeons performing the surgery or someone with the same competence within that field at the medical institution where the surgery is being performed. The surgeon must always make sure the patient has got all the information before the incision is made. He or she must also make sure that the patient was given a reasonable amount of time to consider the decision and that all the information is correctly perceived. The information should be recorded in the patient's personal file.

National routines for patient information

This particular surgery has been and is being performed all over the country and it is therefor very important that no matter where the person goes they should get the same information. There should be an information folder that the patient can bring with them to read.

Surgical sympatikotomi used at other conditions

The method of splitting the nerve is also being used when trying to treat facial blushing and arm pit perspiration

The scientific board has made the following statements:

What has been proved about surgical sympatikotomi concerning hand perspiration is also true when it comes to facial blushing. However when it comes to arm pit perspiration it is hard to say if there is reason enough to perform the surgery.

Medical laws about informing the patient

In the health and medical bill there are special laws concerning obligations on how to inform the patient.

In (1982:763) 2b§ it says the following
The patient shall be given individual suited information about their condition of health and about the methods of examination, health care and treatment that is available.

In the law (1998:531) which concerns occupational activity it is stated
The person responsible for the medical treatment of the patient shall make sure the person is given individual suited information about his/her health condition and about the methods of the treatment and if there is any additional treatment out there.

In the patient journal law (1985:562) is states the following
All information discussed with the patient shall be written down in the patient’s journal with no exception.

Law about quality and follow-ups
In the medical care law (1982:763) the follow-up is discussed.
Within health and medical care the quality within the operation shall systematically develop and become e more secure. In accordance with § 31 there are also the common advice given by SOSFS which has to do with system quality within the medical care operation. In (1996:24) the following is stated

System to develop and secure the quality
All health and medical care shall be operated by a system that involves plan of action, follow-up and development of quality within the operation. All personal shall be involved and contribute to the development of better quality.
In SOSFS (1996:24) there is more information about the obligations on the quality of the system and you can read more about it on http://www.sos.se/sosfs/search/search.asp

The National Board of Health and Welfare

SE-106 30 Stockholm
SWEDEN


2002.10.10
The site is being updated
I am now updating the FFSO site. If you have an interesting link you would like me to add to our "Links" page, please send an email to Morgan (see the "Contact us" page.) I have added a nice picture of the sympathetic chain to the page that describes the Sympathetic Nervous System.


Kjell



News on the Swedish Radio
Reporter Sara Bengtsson

Sweatings that are so heavy that it flows from the body, this is the tragic everyday life for many young people who have gone through a surgery against hand sweating. The method is shortly called ETS and is nowadays considered to be a very controversial method, where nerves near the spine are cut and more and more people protest against this method. The surgery is irrevocable and Karin, who's real name is something else, was operated against her hand sweat when she was 16 years old.
Karin: About 2 - 3 years later I began sweating on other parts of the body and finally it was just flowing. You can't understand this if you haven't experienced this yourself.
SB: Close to 4000 patients was operated in Sweden between 1987 and 1998 with the ETS- surgery. Among those were more than one out of ten patients under 20 years of age. Ulf Haglund is professor of surgery and have evaluated the method on behalf of the Swedish Socialstyrelsen. ETS has helped many people, he says, but he believes that it has been used too frequently, especially when it comes to young people.
Haglund: In this surgery you cut of some nerves, and when you cut them they don't regrow. This means that it is irrevocable. In some way, hand sweating and facial blushing are not unusual among teenagers and in the puberty. Perhaps it is considered to be extra troublesome during a short period. To risk, in this situation, to be seriously disabled for the rest of your life, is something I believe that the health care should prevent.
SB: Some of the doctors who have performed this surgery is now accused by about one hundred patients, not to have given full information on the side effects. The doctors on their hand claims that they always have given the information that they at each time had access to. Christer Drott, who works on the private Carlanderska Medical Center, is one of those doctors.
Drott: Regarding the facts that we know today, not all of those operated in the beginning of the 90's would have chosen this operation, if they had received the information that is known today. It is always easy to be wise afterwards.
SB: If you had known what you know today, about side-effects and so, would you have done so many operations in the 90's?
Drott: No
SB: What do you want to say to the patients who went through this surgery?
Drott: Well, I am very sorry of course, I really am, but you always must judge every decision from the existing level of knowledge at that time.
SB: How do you see your responsability in this?
Drott: Of course we are responsible, we are the ones that have operated these patients.
Christer Drott, surgeon, interviewed by Sara Bengtsson.


2000.07.25
News on the Swedish radio, following the press conference 12/7

About 30 patients who have been operated agains severe hand sweating, will claim damages for the the side-effects that they suffer from. They are going to sue different hospitals, county councils and doctors who have performed these operations. They even intend to sue the Swedish state. Morgan Carlsson is chairman of the association that organize these patients:
Morgan: No money in the world can compensate the suffering that our members are exposed to. We mainly want to have a confirmation that these side-effects is connected to the operation. Money is not the important thing, we just want this confirmation and obtain redress. It is not possible to value a life in the terms of money, but at least it must be counted in millions to all the sufferers.




2000.07.25
Pressconference

July the 12th PhoenixForum (lawfirm) held a pressconference in Hotel Anglais, Stockholm, as a part of the struggle for those of our members who have engaged PhoenixForum and the lawyer Bengt Sternung. The pressconference was announced on the 10th and already the following day several of our newspapers had articles on this subject.
The pressconference was not arranged by our association but of PhoenixForum that represents about 30 of our members. To the pressconference came different television teams; Aktuellt, Rapport, TV4, TT and ABC Local TV, Stockholm. I'm sorry to say that no newspapers journalists were present as far as I know. Besides Bengt Sternung three female members were interviewed by the different TV-channels. Swedish Radio interviewed me (Morgan Carlsson). The different features were broadcasted several times during the evening and we did'nt have to wait for the reaction. People who had seen the different news bulletins have contacted us and many sufferers, who thought they were the only ones struck by side-effects, want to become members. After these newscasts several newspapers have come in contact with us. Different articles have been written about some of our members. Swedish Radio have been in contact with our association and have made a news bulletin. This had the effect that more patients came in contact with us. Many of the frequent debaters on the discussion forums that are on the Internet have mailed us.
We have for a long time talked about a hidden number of sufferers that gradually come in contact with us. Everything follows a pattern; they find that they suffer from different side-effects, and contacts the surgeon that has performed the operation. The answer is that he never heard of anybody else that has been struck by these side-effects.
This is a strategy they use to isolate us from other sufferers. A strategy that will not succeed!!

A member meeting is planned to sometime in September-October. A notice is sent out later.
Morgan Carlsson, Chairman of FFSO


2000.01.25
Evaluation of ETS ready

The professors Hamberger and Haglund have completed their assignment and presented their statement to Socialstyrelsen. From this document we give you these extracts:
H & H states that sympathicotomies to treat hand sweat have a very high success rate. Very few patients get their sweating back.

As a complication to the operation H & H say that Horners Syndrom probably depends on the anatomic variations of how the sympathetic fibres are going to the eye, furthermore HS is dependent on how extensive the sympathicotomy is.

Several long term side effects are described after sympathicotomies. Each of them can not be connected to the operation with certainty, but in some cases the connection is obvious:

Compensatory sweating that can be so severe that the whole life of the patient is altered. The reason for this CS is not clear. In some way an imbalance is created, which leads to this suffering. H & H finds that the figures of CS in literature differs, but about 25 to 75 % of the patients get CS, which they consider to be disturbing in some degree.
Inability to increase the heart rate at physical strain is a documented side effect of the operation.
Reduced blood circulation in the arms and different types of pain are examples of more or less documented side effects coming from sympathicotomies.
Some people complain after sympathicotomies against HH that they are unable to regulate the body temperature. In combination with CS this is a very unpleasant experience: "you feel like a cold fish".

H & H seriously questions if it is justifiable to operate children under 15 years of age for palmar hyperhidrosis or facial blushing, regarding the long term side effects. The cutting of nerves is generally a method that one, according to neurological expertees, should abandon as long term side effects often occur.

Hamberger and Haglund states that the information given to patients from e.g. Carlanderska does not fulfil the demand for complete and objective information, especially regarding the long term side effects. It is of highest importance that the information not only deals with all positive effects you can hope for, but also includes a description of all thinkable side effects, their difficulty and frequency, and furthermore corresponding effects of possible alternate treatment. The information is to be given by the surgeon himself, both verbal and in writing, in good time before the operation.

As a possible alternate treatment H & H mention the injection of botulinomtoxin into the skin area where the HH is located. This is a method that should be considered as a first choice before sympathicotomy.

The summary of Hamberger and Haglunds report is that sympathicotomies should only be the choice for adults with very severe hyperhidrosis or facial blushing. The information to future patients must be given both verbal and in writing and in good time (several weeks) before the decision to operate.


1999.12.29
The survey is out

Just before christmas the survey was sent to all our members, in order to help FfSo to map all side effects and complications.
Please, answer this survey as quickly as possible. We intend to send a summery of the survey to "Socialstyrelsen" so that they can use our material when they valuate the result of sympathetic operations.

Kjell


1999.12.17
Much is going on .....

Göteborgs-Posten
The swedish newspaper GP yesterday, 16/12, published an article about a 46 year old man from Stockholm who are sueing Carlanderska Medical Center for 500.000 SEK for poor information about the risks connected to sympathetic operations. Since the operation the patient suffers from very severe compensatory sweating. The patient claim that the surgeon has been neglectant when he did not inform about the risk that side effects could occur. In this way the patient did not have the possibility to make a true judgement whether to do the operation or not.

Patient insurance
Another of our members has been informed that her patient insurance will cover some of the side effects that were caused by the operation. The side effects, that the insurance company mention as the cause for economic compensation, are reduced physical ability, reduced heart function, pain in one arm, muscle weakness in the arms and oversensibility to cold. The medical expertees who has done this judgement states that these are definitely complications from the sympathectomy.

Morgan and Kjell


1999.12.05
Meeting at Socialstyrelsen (Swedish health authority)
Three members from FfSo visited Stockholm and the Swedish Health Authority Socialstyrelsen, tuesday 23/11 1999. Socialstyrelsen were represented by two professors of surgery: Bertil Hamberger and Ulf Haglund. These two professors are appointed by Socialstyrelsen to look at the advantages and disadvantages of sympathectomies. The evaluation is to be ready by beginning of january 2000.
The meeting began with an explanation from Haglund and Hamberger that the meening of this evaluation is to weigh the pro's and con's of the operations. Furthermore they are supposed to give a suggestion how the future patients are to be informed, so that they fully understand the consequence of the operation and the risks that are involved.
Hamberger and Haglunds assignment does not include to bring up the mistakes that have been done earlier. That is a struggle we have to fight ourselves through FfSo. Some of the discussion from the meeting you can read below:

-Hamberger and Haglund both agreed that there today were stricter rules to introduce a new "new operating method" than there were 10 years ago. Dr G Claes would have had greater difficulties today to start operating "sweat patients" in a steady stream, than he had in the middle of the 80's.
-Concerning the information to future patients the professors were very clear that all side effects must be told, even if they are considerd to be very rare.
-Sympathectomy against isolated sweating of the arm pits is an obvious maltreatment. This sweating is controled by hormones.

The FfSo representatives handed over these documents:

    1. Three different surveys (Borås Newspaper, FFSO meeting in Trollhättan, and an american survey from the Internet.
    2. Different medical statements from doctors that are criticizing sympathectomies.
    3. Articles from different newspapers.
    4. References to scientific literature where side effects are presented in numbers that are much larger than those presented by Carlanderska and Dr G Claes.
    5. A list of known and documented side effects. Acknowledged and documented by different independent doctors. Even Hamberger and Haglund agreed that these are side effects that definitely are connected to the operations. These side effects are: severe compensatory sweating, reduces physical ability, reduced blood circulation especially in hands and feet, Raynauds disease, Horners syndrom, reduced heart capacity, reduced heart rate, impotence, stomach problems, shortness of breath, headache, impaired vision, tinitus, cronic fatigue, reduced pulse reaction. and dizziness.
    6. An extract from the website of Carlanderska Medical Center were they completely avoid to mention any of these side effects.

    The professors Hamberger and Haglund are considered to be authorities in Swedish medical society. As far as the FfSo representatives could notice they take their assignment very seriously, and we, members of FfSo can rely on that they are going to do a fair judgement.
    This evaluation could be an important step on the way to obtain redress and justice for a large group of people who have been maltreated and abused by surgeons and medical society.

    Sekr: Jerry Rudenvall.



    Main page / Background / Side effects / Sympathetic nervous system / News
    Why me? / We want / Links / Contact us / Health tips /