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:
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