Contents
Ina Dźwierzyńska has such joy in life that it is hard to believe how much she has been through the last five years. Her personal drama caused not only an internal change, but also resulted in tangible activities for the benefit of oncological patients. Willingness to help patients, combined with great determination, has already resulted in applications that provide the necessary information about treatment options. And Ina, even though the remains of the brain tumor are still in her head, continues to work.
- The first sign that something was wrong was spots in front of my eyes. Ina went to an ophthalmologist, but it soon turned out that the problem was more serious
- The diagnosis was shock: a tumor of the cerebellopontine angle. In addition, it turned out that the operation would make the woman lose her hearing and could lead to paralysis of the facial nerve
- Ina started looking for a doctor and facility that would treat the facial nerve. She was taken to hospital in Bydgoszcz
- “Doctor, take my ear, just leave me your face,” she said before the operation
- After a successful procedure, Ina decided that she needed to create a tool that would help other patients find all possible treatments. This is how Mednavi was born – medical navigation, service and application for oncological patients
- You can find more such stories on the TvoiLokony home page
It started on Monday
The story of Ina Dźwierzyńska is the first in a series of stories of cancer patients published on the Mednavi website she created.
«On Monday I woke up with spots in front of my eyes. I thought it was the nerves. For months I had been under terrible stress – my company went bankrupt and the people who worked with me were not paid. My debts grew. I felt guilty and cheated ».
– In March, five years will pass from the diagnosis, and on April 13th – five years from the operation – recalls Ms Ina. – I don’t know how this time has passed, it still feels like yesterday.
At the beginning of March, six days earlier, Ina had her birthday. Despite the dark spots in her eyes, she went to the bathroom to put on her makeup, and when she looked in the mirror, she found her face strange. And that’s it. As usual, she left for work. As time passed, her vision did not improve, but even worsened, especially in the right eye, so she decided to see an ophthalmologist.
– The doctor said that my eyes were tired and that it was probably the result of working at the computer. However, at the end of the visit, something touched her, she decided to examine the fundus of my eye. Luckily. She instilled atropine to dilate her pupils, and as she began the examination, her body language disturbed me. I couldn’t see her, but I felt something was wrong.
The doctor told Ina to go to the emergency room immediately to have a head CT scan.
“I asked why, and she said she wasn’t sure what was wrong with me and therefore a test needed to be done quickly.” I did not give up and kept asking until I finally heard that my optic discs were raised, which indicates pressure on the brain – reports Ina. – I later found out that it could also be a sign of brain swelling, caused by a hematoma or a tumor. However, at that time, due to atropine, I was not able to check the diagnosis on the internet.
Ina could not drive, so she called her friend to urgently drive her to an ambulance. When they were in the hospital it was already evening. And when the tomography was finished, she heard that she had a very large tumor in her head.
“I was told that I have a cerebellar-pucker tumor that causes my brain to swell so much that I need to be operated on immediately. I experienced an indescribable shock, but I didn’t want to stay. I said I had to shower in my bathroom and take my pajamas. It was almost eleven and I left the house at 8 am.
Of course, the doctor did not intend to release the patient with the brain tumor, but after a long bargain, he made her swear that he would come back. She promised and went home.
– I was so shocked that I acted like a robot. People react differently to severe stress, some fall into total immobility, break down, others, like me, perform all activities mechanically.
- Buy a diagnostic test package for women
- Buy a diagnostic test package for men
The first hospital
Between 2 and 3 am Ina returned to the hospital.
– I got totally hysterical on the spot, I started crying so spasmodically that I was not able to calm down – he says. “I was given sedatives and a manitol drip to ease the swelling of the brain.
In the morning she found out that she needed to be operated quickly. The neurosurgeon informed Ina that the tumor was pressing against the brainstem, which was very dangerous as hemorrhage could occur during the procedure. He ended with an announcement that if he survived, he wouldn’t be able to hear in one ear. In addition, the facial nerve will be damaged, so it will look like a person after a severe stroke: non-closing eye, dry cornea, difficulty swallowing.
– I became even more hysterical. In an instant, my world ended. Even the information that the tumor would most likely turn out to be benign did not comfort me much.
Ina immediately entered the diagnosis into the search engine. Top of the list came online forums where facial nerve damage was described as a terrible disability. After a short reading, she stated that the doctor had painted her future in very optimistic colors.
“I felt that all this was not really happening,” he says. “I called my sister to say I was in the hospital, but I wouldn’t let her tell my mother.” Not a word about a brain tumor! It was such an abstraction that I didn’t even want to talk about it.
In the end, Ina called her mother herself, and she made a very important decision: we need to find a neurosurgeon who will operate on the tumor without damaging the facial nerve. She was discharged from the hospital on her own request.
Further part below the video.
Search for Rescue
The whole family, friends and acquaintances became involved in helping. Time was of the essence as the swelling of the brain persisted. From the moment she left the hospital, Ina had nine consultations for a week and a half. She did not attend all of them personally. She was sending friends a CD with MRI results by conductor, and they talked to the doctors. Her case was even consulted in Portugal, unfortunately to no avail. All specialists argued that it is impossible not to damage the facial nerve.
– In Krakow, I was visited by a young neurosurgeon who told me not to worry about the facial nerve, because the tumor is so large that you have to save lives and make sure that there is no hemorrhage – says Ina. – This doctor gave me an article by American neurosurgeons describing the method of trimming the tumor. A non-radical operation that preserves the facial nerve. I asked him if he was doing it, he said no, but he would gladly do so. On the one hand, it is comforting information that somewhere in the world someone has a way to treat my tumor, but let a doctor who has never performed a similar procedure open his mind? I did not dare.
Ina’s last consultation was with Dr. Jacek Furtak in Bydgoszcz. The doctor first exclaimed, “Oh God, how big this tumor is! He needs to be operated on quickly ». And then he added, “I have a way for these tumors.”
– I ask which one, and he starts talking about exactly what I read about in this American article earlier. Unbelieving, I asked if the doctor was doing it. And he replied that almost every week – this is how Ina describes the key conversation that led to the breakthrough.
– Mrs. Innocent had a large tumor of the cerebellopontine angle – explains Dr. Jacek Furtak, MD, a neurosurgeon whose team performed the surgery. – Such a tumor locates in the back cavity of the skull and enters the internal auditory canal, where important nerves are located: the auditory nerve, the vestibular nerve and the facial nerve. Unfortunately, most often we detect these types of tumors when they reach large sizes, and the larger they are, the more difficult it is to keep the auditory nerve, and even more difficult the facial nerve, because it is stretched over the growing tumor. In addition, large tumors put pressure on the cerebellum and the brainstem, which can disturb the circulation of the cerebrospinal fluid, causing hydrocephalus.
- See also: I checked for cancer. The test lasted a few seconds
The operation was successful and the patient came up with an idea
Ina Dźwierzyńska was operated on at the 10th Military Teaching Hospital with the Health Care Center Polyclinic in Bydgoszcz. The facial nerve is intact, while Ina cannot hear in one ear as the majority of the tumor was located on the auditory nerve. She knew about the consequences of the surgery even before the operation.
“Doctor, take my ear, just leave my face for me,” she recalls her plea, made just before the anesthesia.
She took the surgical intervention badly. The treatment lasted about 7 hours and there were problems with waking up.
– I had surgery on April 13, 2017, it was Holy Thursday, and I only regained full awareness on Sunday – he says. – I was recovering for a long time.
At the hospital, it turned out that there were patients from different parts of Poland next to Ina. Everyone, like her, heard earlier that something cannot be done.
– I began to wonder how it was possible that it was impossible to do there, and here it is possible – she says. – I came to the conclusion that it is because there is no comprehensive information for patients in Poland. I remember leaving the hospital with my head bandaged half-bald, informing the doctor that I had the idea of an application. And the doctor scolded me: Mrs. Dźwierzyńska, you must first recover, and then think about the applications.
When asked about the procedure, Dr. Furtak replies: – We did not do anything innovative, we operate, trying not to mutilate the patients. We have access to modern technology in Poland, and our additional advantage is that we perform a lot of treatments. Such a tumor is fused with tissues and often shares vascularity with other neural structures. The trick is to remove it without damaging anything while maintaining the function of these structures. Facial paralysis, especially at an early age, is a drama, especially for a young woman.
– Image was very important to Ms. Innocent – adds Dr. Furtak. – She wanted to avoid paralysis of the facial nerve, because the face is one of the attributes of her professional activity. Of course, it was possible to undergo a radical procedure, remove the entire tumor, but it could have been associated with severe neurological damage, not only to the cranial and facial nerves, but also to the brainstem. Our strategy was that we tried to remove the tumor as radically as possible, but at the same time cause the least permanent neurological deficits, such as damage to the facial nerve. In Ms. Innocent’s surgery, the procedure was not radical, but the remaining part of the tumor does not currently have any limitations. The patient has no hydrocephalus and no damaged facial nerve, so she can work actively.
On leaving the hospital in Bydgoszcz, Ms Dźwierzyńska already had a mission. She wanted to give patients information on how and where they can treat cancer. Show them all paths, with all the consequences. Though fresh out of surgery, she was determined to make her idea come true. This is how Mednavi was born – your medical navigation, service and application for cancer patients.
– I really wanted to teach Polish patients to think with the method of treatment, not with a doctor, to share my experience with them – says Ina Dźwierzyńska.
- The editorial board recommends: 10 tests that help in the early detection of cancer
It is wonderful!
When she started creating the Mednavi website, it turned out that there are 72 neurosurgery wards in Poland, 17 of which operate with the method she was looking for. She was just unlucky to find doctors who did not use it at the moment.
“I can’t really complain,” he says. – I was operated on in Poland by one of the best neurosurgeons in the world, for insurance, I did not pay a single zloty for it. It is true that I had 500 km from Krakow to Bydgoszcz, but in Poland it does not matter where you live, where you are registered, you can get treatment anywhere. This is a personal choice of the patient. I did not know that in 2017, and it is wonderful. My only regret is that I didn’t have the knowledge I needed to make a decision, but I have already solved this problem and created Mednavi.
– Let’s take my nine consultations. Each doctor, while devoting his time and attention to me, did not accept someone else at the same time. A patient who has no information goes from doctor to doctor to collect it. It is not only about surgery, because cancer treatment consists of several different stages.
Ina’s case is an auditory neuroma. On the Mednavi website you will find all treatment paths with a full description, as well as facilities offering this treatment.
– I believe that knowledge is an element of effective therapy – admits Ina. – If I had a map of all therapeutic options and knew the facilities to which I could go, how much stress would I save? And yet many patients do not have the strength to do this search.
As of today
Ina is fine, she had her last control MRI at the end of November, the remaining part of the tumor has shrunk. She thinks it’s because of her work on herself. Although doctors have doubts, they also recommend that she keep going.
However, the tumor had already reminded once that it was a ticking time bomb. At the end of 2019, Inie’s father died, and on February 14, 2020, she went for a follow-up visit. Immediately after the procedure, checks were performed every three months, then every six months.
– I found out that the tumor had grown and they are setting the date for the next operation for me – he says. – I’m supposed to report to the hospital on September 18. I experienced an even greater shock than the first time. Knowing what the operation entails, I decided that I would not allow it. I cried and declared that I would stop the tumor from growing. I will work on myself and calm my nerves. I thought: God, why have I been so stressed lately. I forgot that I have to take care of myself.
After visiting Bydgoszcz, friends persuaded Ina to go to the mountains. She rode completely broken. When they got there, the coronavirus pandemic had just broken and a hard lockdown was announced in Poland. She stayed in the mountains for seven weeks.
“It saved me,” he says. – I calmed down very much, I started practicing meditation, working on myself, working with emotions. I was reluctant. I asked the doctor to do some tests for me just before the operation, and for the six months that remained for the surgery, I tried very hard to change internally. The study showed that tumor growth had stopped and Dr. Furtak canceled the procedure. The next MRI was scheduled for April last year and I was very stressed again. However, it turned out that the tumor had shrunk by a millimeter. A recent survey in late November indicates that the tumor has shrunk even more. Medicine can’t explain it, and I put this success down to my willpower – laughs Ina.
– Mrs. Innocenta is aware that some part of the tumor is left. He is under radiological control, he performs routine examinations from time to time, and besides, he lives and works actively – sums up Dr. Jacek Furtak. – There is a term – disease-free period. It means that the patient has some disease, but at some stage it is asymptomatic, allowing him to participate in working life without any side effects. However, the doctor must honestly warn the patient that nothing is forever. It is a wish that the remission period is as long as possible, but the follow-up examinations must not be forgotten.