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.
2000.10.11
New discussion forum
FFSO-member John O have created a new discussion forum. On this site both members
and non-members can discuss sympathectomies, side-effects and others.
You are all
welcome with your postings. We have not yet set a language policy, so there
will probably be threads both in Swedish-Norwegian and in English.
Welcome! See our
link page or go directly to
FFSO Message Board
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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