Keskisuomalainen 27.1.2003
When you need an ambulance to take you to the shower?
Long term pain has bound a young vet from Palokka to her bed for two years.
It started in her knee, but delayed diagnosis allowed the pain to spread into her spine and now there is no respite from it.
I wish I didn´t have to be taken to the shower in an ambulance! Sari Solanti cries out. She knows how many hours of pain to expect after the shower and travelling on the bumpy roads.
The young vet from Palokka suffers from a rare condition called CRPS, which has completely disabled her. For two years she has not been able to leave her bed; just to take a shower she has to be transported to a hospital in an ambulance.
A delayed diagnosis allowed the pain, which had started after a knee injury, to spread into the spine. There the pain has left its imprint on the nerves and there is no rest from it. Sari sleeps for 15min at a
time. Sari Solanti has had to endure everything from disbelief to dismissal. Facing the pain, the helplessness and powerlessness in front of it is confusing even for the medical profession. Sari is not telling her story to point a finger at anything or anybody or in order to vent some of the pain, but only to be able to prevent the same from happening to anybody else.
Clinging on to the dream with both hands
"One day I will be able to sit in a wheel chair and watch my dogs run on the field."
Jyvaskyla Mlk
Aino Suhola
She is alive. After all that pain and still suffering from it, it is a miracle. It is even a bigger miracle that she is alive as one who thinks and has emotions, hopes and dreams. Still, everything is very fragile.
"If just one person could avoid this experience, telling my story has not been in vain." Sari Solanti says and smiles. The dog gives a sigh and rolls over beside her bed. This is how they have lived for the last
couple of years for each other, "old lady" Border Collie Cola and the young vet.Sari Solanti suffers from a rare and advanced condition known as CRPS (Complex Regional Pain Syndrome). Her case history is like a nightmare and her experiences in the past couple of years could be made into a horror movie. Hope, dogs and friends keep her alive.
Foot slipped when orienteering
The long torture started when 14-year-old Sari hurt her right knee in an orienteering competition. The knee was operated on, but she contracted an infection. The infection healed but the knee joint was affected. During the following 15 years it gradually got worse, but during that time Sari graduated as a vet and started working. "I have experienced normal life, too." Sari says. But before she could really
get into her dream job, her knee stopped working. That was the beginning of a cycle of examinations, operations and infections. Then she had to decide whether the knee should be set to a fixed position or should it be replaced with an artificial one, which carries a risk of infection. "For me an artificial knee meant a healthy leg and that´s what I wanted. I was warned about the risks, but we thought the worst thing could be an infection. An infection could be cured with antibiotics and if that didn´t work, they could always set the knee in fixed position later."
Once more carrying a rucksack
The operation went well, and despite slow recovery Sari was soon back on her feet again. "After three months I picked up my walking poles and my rucksack, put the dog on a leash and sailed to Sweden to a dog show," she says laughing. On the return journey she caught the flu, which was the beginning of the nightmare. At Christmas 1998 her real problems started. At that time they finally diagnosed the bacteria, which had caused the previous infections. The antibiotic used to treat it caused severe vomiting. Or that was what was thought at the time. The antibiotic worked, infection subsided, but the pain in the knee and the vomiting got worse.
Is the cause in the head or in the knee?
Sari´s weight plummeted tens of kilos and even anorexia was suspected. When the pain in the knee just got worse the cause was thought to be in the head instead of the knee, until a psychiatrist suggested that she´d see an orthopaedist. "I was in such pain, but when I was being told that I couldn´t possibly be in pain, I kept quiet. Later it was found out that CRPS had then already started." Sari says. The vomiting was caused by damage to a part of the brain, which in turn was caused by the reoccurring infections, and the result was some serious and sometimes even dangerous symptoms.
"The illness was disguised by other things which strengthened suspicions of psychosomatic causes. After all, I was in the hospital for an operation on my leg. Possible physical causes were not explored and the damage to the brain was discovered years later."
Suspect pain
An odd complaint is easy to explain as psychosomatic. This is often the case when the symptoms are complex and difficult to identify. Sari knew that something was seriously wrong, and eventually it was found out that there was bacterial growth in the knee which had not shown in the tests and which the antibiotics had not been able to destroy. The knee was opened and the artificial joint was removed. After four months the knee was "fixed" and the pain should have subsided, but it didn´t. It just got worse and worse. "But nobody believed it. One doctor tried to prove something by provoking extreme pain by forcing some very painful exercises. In the end I was crying from pain and fear and he shut me in the bathroom knowing very well that I couldn´t get back into my bed by myself. When I later complained about this treatment, I was told to drop the subject in order not to cause problems to that doctor?"
Two years in bed
Sari had a problem and it got worse. New symptoms appeared. Her foot started turning inwards and the cramps got more severe. The foot was put in plaster in order to straighten it, but it kept cramping so violently that the skin was rubbed so raw that it took eight months to heal.
The symptoms got worse; nails thickened so much that they could only be cut under anaesthetic. Because of the late diagnosis Sari´s pain was allowed to progress for four years and to reach the spine. The nerves in the spine bear the mark of the pain and therefore the pain is constant. "It is there when I am sleeping, and it is the first thing in my thoughts, even if I try to hide it," Sari says. It has disabled her. For the past couple of years she has not been able to leave her bed. Having part of her thighbone amputated stopped the cycle of infections, but not before they had destroyed her general health.
"I get taken to the shower in an ambulance"
"My leg is so sensitive to touch that it cannot be covered. It is so sensitive to movement that the bed cannot be moved. It is so painful that sometimes it is difficult just to exist," Sari says quietly.
She is taken once a week to the health centre in an ambulance for a shower, and these bathing days combined with the transport cause such pain that it sends Sari into a state which can last for up to six hours, of which Sari has hardly any recollection. She can only sleep for a quarter of an hour at a time. Lack of sleep, pain and medication affect her memory.
"CRPS can be cured if detected early on," Sari says with a tired smile. Still, she is not bitter; she has enough to suffer as it is. Instead, she looks for a more positive viewpoint, and every day she finds reasons to think herself fortunate. "That is how I keep going. And when I feel that I can´t, the dogs remind me that there is always a reason to keep going."
"I am not here out of spite"
Sari is talking so that no one would ever have to go through the same experience. She is also talking about the ignorance and helplessness amongst the helpers often translates into rejection and turning away. " I am not blaming anybody, but I am not here out of spite," she says. "I really want to get moving again, I want to live again! I´ d like to find a person to whom I could turn to when I need help and who would not run away when things are difficult."
Sari needs help with everything. In the morning, during the day and night the home help or the home nursing service visits her and in the evenings she has a personal helper. Hanna Pajunen and Niina Liikanen have become good friends, too, and Riikka Totterman who started in December helps her wonderfully.
"I don´t even dream of life without pain"
Sari is a well-respected breeder of Border Collies and Shelties. Her dog-lover friends in Finland and around the world keep in touch through the Internet, telephone and frequent visits. Her friends have founded "Dog Lovers" CRPS2 Support" to find and distribute information and to raise funds. Amongst the dog lovers there are even a couple of foreign doctors who specialise in pain management and consulting them has proven useful. Treating the pain is Sari´s only hope. She has a good pain specialist and she is prepared to try even risky new treatments.
"In the beginning I expected that the knee will heal and that I will be back to normal. Now I hope that one day I will be sitting in a wheel chair. I hope the pain will subside enough for a prosthesis to be fitted. I don´t even dream of life without pain." She has another wish,though; "One day I will sit outside in a wheel chair and watch my dogs play."
From: "Catherine" <catherine@rsd-crps.co.uk>
Subject: Translation from FinnishHi,
I have copied below and attached a word doc with the translation of
Sari's newspaper article in to English. Someone via the Open University
translated it for us, and I have sent our collective thanksCatherine xxx