my story

Finaly I translated :)

My story

The main reason why I started  to look what’s wrong with me was my headaches, because it was the worst symptome I had since the early childhood… My pediatrist said, that in his report is written I have headaches since 1999 (Exactly was written, 1999 - Ewa has headaches for a long time). 

I was born in 4th of January 1993, 10/10 in Apgar scale, everything was perfect, I was completly healthy child. My mom gave birth exactly in term, even doctor was schocked! Tearetically everything was perfect. Teoretically,

When I was half year old I stopped eating milk from my mom and started to eat normally, but that time I started to vomit, have diarrhea and  I very fast get dehydratated so I was taken to the hospital. When I was a child it wasn’t like it is now… My mom couldn’t come to stay with me, I was tied to the bed to not to walk out of it and it was very cold (till now I’m affraid of cold, I don’t even know if that has a medical name, it's not that I need it, but medicine give names on everything, like when you are affraid of spiders it is called arachnophobia etc. :)). When my mom saw it after a week, she decided to take me away from this hospital, fortunately I had diagnosis - coeliakia. It wasn’t so fashioned, modern, cool to not to eat gluten that time, so many things we needed to take from Germany. Very, very helpful for us was the brother of my dad with his family, thank you all for that!

In the time when I was a little child (it sounds like it was ages ago :)) ) it was said, that coeliakia is a childrens disease and then it goes away. Now we know it is a genetic disease and can last for the whole life, but mostly it become in low-symptome form when person get older. Anyway, once in the store someone gave me a breadstick and I, as a child, ate it. When my mom saw it, she got panic that I will vomit, have a diarrhea or stomach aches etc. but… nothing happened. So everyone thought my Coeliak went away forever. I just had diarrhea, constipation, stomach aches from time to time. But who hasn’t that? My thought was, I ate too much, maybe the food was old or had too much fat (polish food has really a lot of fat). The older I get the bigger this problem became so I was going from doctor to doctor, but I always heard it is nothing, even a blood in a stool is nothing, maybe it is IBS, NONE thought about coeliak disease, NONE made any test, so DEAR DOCTORS, do not treat it as an explanation to yourself, that someone else didn’t find a good diagnosis so that gave you a right to not make it as well. Gastroenetrologists  (mostly in Poland) behave more like iridologists,, look at a patient eyes, maybe look at the belly, touch it a little and give diagnosis. No test, nothing! And when patient asks, diagnosis changes for „STRESS”. And everything because I’m young.

Anyway, except of some small accidents like fell down from the sofa and my hand touched my arm - my parents with panic took me to the hospital and doctor said looking on the x-ray „oOOoooO that’s intresting, your doughter doesn’t have bones in her hand, just cartilages, intresting…. anyway, she will be fine”; I was growing up like a normal child. Hmm maybe with some hearing disorders, I didn't hear good enough.

In general, I was very activ kid and fact I didn’t kill myself is a miracle. From this bigger accidents I had: when I was 3 I fell from about 1,5m on my head in circus. I was sitting on the bench without the back and when I was watching those mistreated animals I just fell down to the back. Since that time I started to have headaches… So be careful with the cirucus with wild animals! Something may happen to you, and for sure will happen to those wild animals…. Anyway (I like that word and I’m going to use it often!:)) I destroyed my chick, fell down on my head from the tree, had many accidents on skis, bicycle, rollerblades, and everything I tried on. Because I couldn’t behave like a normal, sweet girl playing barbies or other dolls… I had to do everything on 100% like a boy, it didn’t matter that I didn't know how to use rollerbaldes,  I will use a road to learn it and go down from a hill, I wasn't affraid some car may hit me, I see cars they see me, natural right? Fortunately there weren’t so many cars when I was a child ;) So I didn’t know where are brakes in rollerblades so on the end of the hill and road I stopped on some tree or something.The same rules was for ski, bicycle, skates, scooter, skateboard and everything what was possible to try. So, like I said, the fact I’m still alive is a miracle. I also had a brother who I was buliding houses etc with at home and outside. Only God (If he exist) can know how many times something fell down on our heads, how many times we burnt our hands and finished in hospital with a screw in leg. Once we even tried to burnt our house, this real one, we really didn’t want that…. 

Oh I’m so sorry for my parents and grandparents. They had to really love us :)

In my childhood I always had problems with my sinuses, pharyngitis, bronchitis, tracheitis… Flu I had quite rarely, fortunately, but bronchitis I had almost all the time, and when I was caughing I was trying to spit my lungs (figuratively). But about doctors, none ever checked what was really wrong with me, what kind of virus or bacteria I had, I started to caugh or I had throat ache? ANTIBIOTIC. Always. On everything.

When my succedaneous teeth starting to grow my bazoo was quite to small for all of them, so one was growing on another, what is called crowded teeth. I wasn’t happy about that but my dentist decided to remove 4 teeth and put a brace on the rest. I was too small to make my own decision, so we did it. It wasn’t that bad as I expected, but my teeth still aren’t so perfect as I want them to so I need to think about a brace for them again, but now i have bigger problems.

My eyes… This story is intresting. Everything started in primary school, I didn’t see very well, so my mom took me to the ophtalmologist who said I have small myopia and I get glasses, -0,25 Dpt. Not much right? But in a month, there was -1,5 Dpt and in half a year -5,0 Dpt… I was in 4th class of elementary school. I had my glasses like many other child. But I think I somehow liked them, my Mom really tried to choose the best glasses for me which fits to my small, childish face :) Few years later I started to see worse again. I was afraid I’m going to be a grandma faster than I thought. I went to the doctor and then… my eyes are on -1,5 Dpt…. I was schocked, my Mom was schocked, Doctor regreted that she took me as her patient. But none was looking for the reason, it is better? So we change glasses and life goes on. Then with years my eyes were getting worse and now I have -4,75 Dpt and use contact lenses.

The other thing which was trying to destroy my childhood was pain. Pain of hips and bones, I mean all bones in my body. About bones pain doctor were telling me that I’m growing. Perfect, everyone grows and not everyone hurts because of that. The worst was with hips, because the pain didn’t let me move, stand, sit, lay and do anything what was possible, so I was taken to the hospital and my leg was tied to 2-5kg weight. I couldn’t move for 2 weeks. If I wanted to go to the restroom I had to call for the nurse, she was comming with a wheelchair and I was going 5 meters to the toilett on wheelchair. Once I remember, I was woken up by an ambulance. My leg which was on weight wasn’t covered so it was frozen! I don’t know why, but when my feet are cold, automaticly I need to pee… I completly don’t understand that. It was 4-5 am and I was so affraid to call for a nurse. I am a person who doesn’t want to disturb, and it was so early, and I could wake up whole hospital! So I didn’t know what to do. I really had to go to the restroom. So I had to untie myself, went to the toilett, did what I had to, came back, and tied again.Uff none saw me. Mission completed. Can you imagine that stress?

After 2 weeks my hips were much better, but family and friends started to talk that there is something wrong with me. I’m always ill. And they were telling in a bad way, that maybe I’m pretending I’m sick to not to go to school. 

Except of all of that I had big problem with sinuses, so all the time I had taken x-rays. I don’t understand that. When your stomach hurts, doctors do nothing, but about sinuses, every doctor must have his own x-ray. Completly must have! anyway, I was taking so many antibiotics but it never gets better, none knew what to do so doctors were just changing antiobiotics for that.

In 4th class of elementary school I twisted my ankle very bad, I broke my elbow and had a crack on my tibia (Not in one time of course!), this is what I know, and there are many things I don’t know probably (later you will see why). If some bone went out and get back into the joint or I put it back, it was fine for me, I didn’t know it is something bad. When someone else twisted something, there were crying, screaming, calling for God, last farwell, priest and doctor. I didn’t know I twist something, I put bone back in the joint and was continue what I was doing. But about the tibia bone, the situation was: I was standing with my friend next to the stairs and from upstairs something was falling down very quickly and when we looked up we were falling with them. My friend broke her elbow and to those falling deadheads nothing happened! They were still running on school aisles with fired firecracker in their asses. I had some pain in my knee but it was too small to go to the doctor and with that I was going 1,5 km (about 1 mile) to school and back home for 3 days. After 3 days my knee decided it will work on another side…. And for me it was a sign to go to the doctor. Doctor looked  at the x-ray picture (yeah they did it the same day I came to the doctor, schock!) and said there is a crack on my tibia bone and I need a cast from groin to my toes! So after one week I decided that’s enough of using this nice, light, blue cast and I’m going to take it off by scissors! Yes, my mom was helping me with that ;) It wasn’t a good idea and we needed to go back to the doctor. Can you imagine doctor’s face when we were explaining him how I was pretending I am an orthopedic??? No? So try it! It’s worth it! I fully reccomend you that! Unfortunately the cast was put on again and doctor said that if I take it off again he will hang me. I’m not sure if that would be menace or blessing ;)

When I was 11 I had first head MRI, because my headache didn’t look like comming from my eternal sinuses inflammation. The good thing - I have a brain, aaaaand it is working ;) That’s what doctors told me. But you know, they might be wrong. They are almost always wrong. But I believe in my brain. The sad thing is that none looked at my spine which wasn’t so perfect.

I also had big problem with breathing, so we („we” always means my parents and I)  checked my heart and my lungs. Lungs are clear, in heart is a small mitrial regurgitation. But because I was sporty and had problem with breathing when I was moving, there had to be secret reason for my symptom but not discovered yet, so from the doctor I get a report that I cannot go on PE in school. But because I liked to move I used to going on PE but without running. When I was running, after few meters my face began to be red with the line on my mandible and I felt like I’m going to loose my conciouse because of lost of breath. I could start to have problem with breathing even if I was telling something for longer.

There is one more thing which tried to destroy my childhood, youth and actuall oldness… Bladder. I always find a good reason to go to the toilett. When we are in a trip, we can stand every 15 min, and every 15 min I will go to the restroom. I go daily more than 20 times. Trips by car are very stressful for me as car doesn’t have a toilett!!!!! School trips were the worst as any teacher understood that. I remember once, in junior high school, we stooped because my classmate was vomitting. For me it was a good reason to go behind the tree. But then someone from the bus screamed „Kowalow is peeing!!!” and everyone went to the windows with theirs phones. I heard that on the phones nothing was visible, but can you imagine how it worked on 13-14 years old girl????

I had also a pain in my stomach, like someone hit me by a stick on my right ovary, few times a day. It was very, very painfull for few seconds and the pain disapeared. My periods also was very irregular but who cares… will be better when I am older.

Generally I remember I always was going to some doctor - neurologist, cardiologist, pulmonologist, laryngologist etc. Everything was alaways within the normal range.

Then came a time to junior high school and I become to have terrible depression, which I have till today („Kowalow is peeing”). It never wants to go away, it is always somewhere around, closer or further but still is. Sometimes I think I always had depression, even before Junior High School, but it was smaller, and after this school started to be very big. Now I’m taking venlafaxinum, the highest dose, I cannot funcion with lower dose.

All the discomforts written above were getting worse with time, and I was thinking that I am to weak for that world, others can walk in the mountains, have fun for hours, meet friends after school, can focus and concentrate on lessons and they don’t have headaches… Doctors did good job to make me believe all the symptomes are in my head… 

Generally I was very active child, I loved water and everything what was connected with, like water ski, swimming, sailing or motor boats, jet skis, windsurfing etc. I loved also regular ski and snowboard as well, that was the only 2 things I could do in mountains. In school I played volleyball, handball, football (soccer). I hated athletics… running as you know was terrible for me, jumping as well. I also didn’t like basketball, I don’t know why.

After Junior High School came time to High school, where AGAIN had to be integration trip to… mountains! of course. So everyday I felt like someone was tortouring me. When we were walking my joints hurted and sublocated all the time (especially shoulders), my face was red, heart was racing, I had dyspnoea, my head hurted 9/10, my back hurted…  But what did that mean to everyone? Lack of fitness and trumping up, I LOOK like healthy person, so I should do what everybody does, not pecking.

After integration, high school was very nice, I met there my best friends! There was first loves, relationships, kisses… ;) Everything great except symptomes above and below. Of course the same situation with PE :) But here, in High School starts the main story ;)

On the holidays between 2nd and 3rd class, when I was 17 my head started to hurt me a little different. The pain didn’t want to go away, no laying, no moving, no painkillers, no other painkillers, nothing was helping! I get a conjunctivitis (thousand time in my life). What was important, we were spending our holidays on sailing boat, all the time everything was moving, we were going in a bow…. I started to think to make a post with pictures with all those situations ;)

When I started last, 3rd class, it was difficult for me to handle with everything. Quite fast I started to learn at home. The pain didn’t let me go to school like other students did.

I went to childish neurologist, who was just giving me medicines for tension headaches (meds for epilepsy, because this is how headaches are treated in Europe) and also pills against muscule tension (any of them was working).

I had head MRI, normal one, with angio, MRI of whole spine and what? Small degeneration of the spine, which I shouldn’t have had in my age, but it doesn’t hurt because, 60< years old people don’t say it hurts! But I’m not 60 and have those changes… Head is clear, brain is still there. I had also CT scan of my sinuses and here we have revolution! Inflamations, polips, everything is blocked… Doctor said that here the surgery is needed because no meds help for it. I agreed on that visit, without even thinking of the risk, so imagine the pain.

In the meantime was weekend so I went with my mom to our neighbour for a party. There was loud, live music, I spent on that party around an hour and then my pain was so big I had to go home. I told my mom I’m leaving and will be sleeping at home.  I barely came home and when I went into I just layed down on the floor. Pain was so big that I couldn’t move and the tears were just going on my chicks… Finally to the house came my brother and when he saw me he imidiately took me to the hospital. My mom didn’t pick up the phone as the music was too loud. My brother wanted to take my mom to the hospital but he couldn’t leave me on emergency alone as I was only 17. So his friend was sitting with me. Of course when my mom finaly came, was under the influence of alcohol, so for whole my stay there none treated my mom seriously. Finally, after 3 hours of waiting on emergency, I was taken to the ward and doctors gave me some strong painkillers IV and the pain was like 6-7/10, so fine enough. In the hospital I spent a week, where doctors did one test, EEG, which showed I have epilepsy… But then we were told that this machine was broken. And doctors said I have problems with sinuses……

Aaaah you may ask why my dad couldn’t take me to the hospital, well… he was on delegation… in Las Vegas :)

The surgery on my sinuses I had quite fast after CT scan and I was operated in Warsaw in privat clinic with very good doctors and very nice nurses! Unfortunately, I had problem with anaesthesia, when I open my eyes after surgery the pain was unbearable, the anaesthesiologist tried her best to help me and finaly overdose morphine and couldn’t give me anything more… So she put me back to sleep. After the surgery, doctor came to my mom and said that my tissue inside was different of those he had ever seen in his eyes, and he operated in USA as well. He said that something was wrong.

Next day, when I finally could eat, I ate breakfast and then my parents brought me some food on lunch from Chinese restaurant and then we could finally go home at 8 pm. There was no highway on the part Warsaw - Strykow, so there was huge traffic and you needed 2-4 hours more in the car.  When we were on that road I began to have huge, red spots on whole my body, it was itchy. My parents and I didn’t know what’s going on… But we were keep going. It was getting worse and worse, so we stopped in a restaurant to eat something and to let me drink a lot of water to irrigate my body, we thought that it may be allergy for something. We came back to the car and continue the road. But I started to feel worse and worse, and worse… So we didn’t know if we should come back to the hospital where I was operated or to go to Poznan where was closer to our house from in case I had to stay. Finally we decided we are  going to Poznan. For this 2 hours I was almost loosing my concious. Imagine how bad it should be that I was taken to the hospital and in 2 minutes I had PVC in my hand and doctor was giving me medicines. It was anaphylactic shock. When I get all the antihistamine meds I started to feel better in 15 min, and after an hour I could go home :) 

After surgery my pain didn’t get better. Dr J. from Zielona Gora, neurologist, was saying that it is tension headaches caused by stress and there is nothing wrong with me and told me to go to Mr. G, who I was going to, to relax the muscules on my neck, shoulders and around the spine in general.

We were also to Prof. S. in Warsaw who said that it is just tension headaches caused by stress and my parents should take me to the psychiatrist, and he also said that I do not want to learn. This kind of doctors were thousands on my med trip.

There were also magicians (I’m not sure if I used a right word as I translated directly from polish) who were telling that I have brain tumor, and no MRI will find it, but we can come to her and she will fix me if I come few times and one appointment costs 500€ (she didn’t even see me), another guy said that I have a spirit of 40 years old man in my right hemisphere of the brain (we were talking by phone), I have been also to iridologist who said I have all general disease - but not the one I really have. I also was to a Russian guy, massus, who, by touching my back, told me I have fibroids on my ovaries… :)

Maybe now is also a time for family ideas… The best and most common ideas of the reason of my headaches was: „she’s not eating the meat, when she starts, everything will be fine”, I should go to another magician, I should do bio-MRI, I don’t have enough of some micro or macro elements, I should move more, I should run, I should stop spend so much time with animals, i should go out more, I should go for a trip to moutine and climb, I am hypochondric! I love good advices and domestic doctors 😉

From the funniest thing, our priest gave us a number to one physiotherapiest, who by phone said that headaches caused by spine is so rare that it is impossible I have that and I should come back on studies and move more! We have never met! My mom talked to him by phone... (It was a litttle later, when I was on the university already)

I was using acupuncture as well, but it was causing huge pain and giving any help. My mom once went with me, she didn’t feel anything but fell asleep during that,

I had to change the school, as I was never there. My class teacher was very nice, but when the student is ill for months she had to do something. I am so thankful to her for all her help for me, I really appreciate that :) So for the last half year of the High School I was going to the privat school and to be honest… my pain gets better (I was still on physiotherapy to Mr. G). There was comming spring and with a spring - matura exam. I passed it, have no idea how, as on polish I had something which I didn’t do in the first school and in the second they already had that when I came ;) But I passed it and could go on university. I dreamt about veterinary and I went over! I was so, so happy, and my head was fine so I thought it’s all behind me. 

On holidays my family and I went on a boat again and my constant pain did come back. But this time I couldn’t do anything. My study was starting. We just did an allergy test, as the pain was again in the same time, but everything was clear, to be honest, I was happy, because I was affraid I’m allergic to animals and that would be a disaster) My university was 200 km away so I had to move, I was living alone and I could do what I wanted, you know that feeling, right? :) But can you imagine the pain I had everytime when I was going home, to my parents or back on studies?

On my studies I was dating A. (Just on first semester of first year). and we were living together. Once we had fun on bed and I fell down from it straight on my head. Pain was terrible, and my head was blocked completly, not only because of the pain, it stopped in a little turned position. There was no time for doctors as tests and exams on university were much more important for me than checking what is wrong with the spine. After few weeks I contacted Mr G. (physiotherapiest), he told me to do x-ray, which showed that there is low high between 2 vertebreas but it was not that bad and spine was completly straight (should be in lordosis)… But for doctors it’s much to less, as they saw soooo bad fractures so they don’t care on some small changes, and by the way Headaches are never caused by cervical spine!!!  better to remember that, when we look for a reason of our pain. Well, I still had headaches, without any reason, doctors know only „migren” or „tension headaches caused by stress” or it is my imagination, read I have „hypochondria”, evenetually the pain comes from the spirit of this 40 years old guy in the right side of my brain… ;)

Because the pain always get worse on autumn, my parents and I wanted to check again the allergy, it would explain the breathing problems as well. Different test, negative. So maybe multiple sclerosis or again brain tumor. No.

Well, I still was going every week 200 km for physiotherapy, so Mr G. gave me a contact to his friend in Wroclaw (city I studied in) that I didn’t have to go with this pain so far.

Did I said that I was living 200 km away from my parents? And I could do what I wanted? None was checking me? None was controling? I was going on physiotherapy very often and I liked to go there. But there is one more thing, I lost feeling on my hands and thoracal part of my spine after falling down from bed… But as you see my parents didn’t controll me on nothing, I was choosing what and when I’m doing, and my parents were comming or helping me only when I asked for it. It will be important for later :) keep that in mind :)

In the meantime I was also to ophtalmologist, because I was loosing vision on one eye. She found some problem with pigment and told me to do more test as I could have pigmentary glaucoma. I don’t know why I didn’t go check that…

On the end of first year I started to date T. T was so lovely because he wasn’t intrested only in his pleasure. He was worried about my pains, every time, in this intimate time as well (well when we talk about that I had problem with dryness, pain, sting, decreased libido). So when the stomach pain was unbearable T told me I have to go to the doctor (gynecologist) and check what is wrong, and gave me ultimatum, I choose doctor in 3 days or he chooses for me. I chose one, a woman. She was great, understood it is my first time and I am ashamed. Doctor said there is something wrong and we need to do USG, we changed the room (none could see me), left ovary was fine but right was not visible, Doctor M said she needs a consultation, she gave me a blanket and left the ultrasound inside - if someone doesn’t know how it looks like, it is a long, thin device on which doctor put a gel then a condom and then a gel again and then doctor put it into a vagina and move it looking for ovaries. Normaly it is not painfull, for me it was terribly painfull. - anyway, another doctor came, was the same gentle as dr M. and they were talking about something very seriously, I understood only „surgery”. Then Second Doctor went away and dr M and I came back to the previous room. I dressed up and sit in front of a her. Doctor told me, that I have some tumor, it might be endometriosis but it is big, ovary is turned and probably dead and should be removed. I was telling „okay” to everything, my brain couldn’t find a better word that moment. I got a list of tests I should do (even to check if it is not a malignant tumor) and I got a prescription that if I feel any bigger pain I can go to any hospital and they have to take me on ward immidiately and do the surgery. But the planned surgery was 3 months later. I left the doctor and came back home, stand on balcony and was trying to call my parents. I didn’t want to worry them.But finally I called. With them and my brother, we decided that I go to Berlin to check there, what is wrong, to Charite. Because my parents were on Mallorca, my brother decided to go with me. 

That time I was very nervous and sensitive on everything, I was arguing a lot with T, was screaming a lot and my mood was changing all the time.

Anyway, we went to Berlin, I was so stressed that I get lost and I was late one hour, but Profesor in Charite waited for me. So I explained everything and then Profesor said he needs to examinate me, what was normal, but he said to my brother he can come to examination room as well, my brother said „no, no it is not a good idea”, thanks God! To this room when I was already on that gyneacologist chair came another man, who wasn’t a doctor, he was a nurse, from cardiology, but he was speaking polish. I said I’m fine I don’t need a  translator, but profesor said he must stay. Profesor wasn’t gentle at all. The examination was so painful for me, he was puting inside me everything he could and everywhere he could… The nurse was pretending he’s not looking between my legs, but he did, all the time… Trust me, for a girl, which it is a second visit, it was so traumatic. The door were half open, Profesr couldn’t find anything in the room and with the nurse were running around the room, sometimes were going out and never close the door… And I was all the time half naked on this fucking chair. I went out crying. Profesor gave the same diagnosis as dr M. I get hysteric when none was understanding me I do not want to have surgery there, in Berlin. I was crying all my way back, and finaly my mom said she had once a good surgeon gyneacologist, who can see me and, maybe, do the surgery. I agreed. 

After I came back home to Wroclaw, my boyfriend was in my flat sitting on the coach. He didn’t want to listen what happened. He said he has enough and he’s leaving. He said we have no future. Can you imagine my cry and hysteria then? He left me when I was crying sitting on the floor.

My mom made an appointment to Dr B. in Poznan. He was very, very nice to me, very gentle. Door were closed from the inside, it was only me and a doctor. By the time I received the blood tests and they were fine. Doctor said it is teratoma and he can remove it, everything will be fine. My mom was waiting outside so after the examination she came, and doctor told us next steps. My surgery was next week in the same clinic where was doctor practice. Fortunately my teratoma was  maturum, what means everything was very good. The only problem with the surgery was again with anaesthesia. When I open my eyes the pain was terrible. Anaesthesiologist overdose painkillers and I still felt the pain… Doctors told me i’m too sensitive and to bend my knees, the second part helped. Then I was loosing my concious all the time. I was „falling asleep”, stop breathing, my heart was slowing down and aeration was faling down very quickly. So everyone was hitting my face to wake me up :) Nurse and my mom had a mission not to let me „fall asleep”. It was happening more than once a half a minute, but then rarerly and rarely and I got better finally. My mom was allowed to hit me in my face for those every years in the past and in the future as well ;)

In the night I had terrible hallucinations. A big insect was walking around the room or doctors brought to my room a boy who was dying… Another day doctor was laughing, that I shouldn’t take so much medicine when I told him that. But about surgery, he said it was hard, teratoma was big, like a grapefruit and that my tissues inside is very, very different than others, what is strange, but he wouldn’t worry. Thank you Doctor for everything you did for me <3

After this surgery I had to pass the last exam on my first year on university. It was verbal and I was as a one on the beginning, what means right after surgery I should be on exam :) Teacher Doctor didn’t believe me I was operated so my dad had to call. I have no idea how but every woman fall in love with my dad, no matter if they talk by phone or in restaurant or on buisness conversation, but doctor agreed to let me be the last student on the exam :) I passed it and I became a second year student :)

Ohh I would forget, my head still hurted :)

We were also on holidays on Mallorca, where I started to suffocate so hard, that my mom took me to the hospital, and what they said there? STRESS…. Yeah, stress on holidays… great diagnosis.

In general my studies were going worse and worse, I had terrible problems to focus or to remember something. My brain just stopped working when someone was talking longer than 30 seconds. It was hard for me to do the notes on lectures, because I couldn’t remember what professor was telling 2 seconds ago. The one thing I could do, was to play on my telephone, my brain didn’t have to think and the game always waited for my brain to switch on again… That also helped for stress I had because of problems at school.

Well, I was getting fatter, maybe because I didn’t move too much, maybe because thyroid.. Probably both, and birth control pills, depression, stress and all of that rendered that I was getting fat :) So I went to the gym, with a personal trainer (don’t get excited, it was a girl ;)). Oh God, it was terrible, I had to run and run, and run with 5 kg sack on my neck, and run and do soooo many hard excersises. I was dying every time after training. Really, my feet hurted, but my head fucking hurted, I coudln’t handle it, I was crying at home and nothing helped for pain. I couldn’t come back to gym after 8 times. I didn’t have muscule sores, I had headache, terrible headache, on my occipital part going to my eyes and my vision was getting worse after as well…

On the end of first semester of second year, CT scan showed I need another surgery on sinuses, this time sphenoidal sinuses, which are exactly under the brain. In the same time I gave another chance to my lovely T, the one who left me before the surgery on my ovaries, unfortunately he left me again just right after the information about sinus surgery. He said that it’s because my crying and feeling sad. But who leave the girl again just right before surgery? He could leave me before the diagnosis, not after when the stress and sorrow is the biggest….

There was a big hope that this surgery help for my headaches, as pain were connected also with pressure (aeroplane, mountains - I had to leave skiing) and it could be connected with sphenoidal sinuses.

The surgery was right before Christmas, in the same clinic as the first one, in 2012. Doctor has changed anaesthesa and I slept perfectly. I woke up without post-op pain. Unfortunately my normal headaches didn’t disapear… I really appreaciate what doctors in Warsaw did for me and I really believe they wanted to help me, but unfortunatelly problems were somewhere else…

Shortly later on my ovaries apeared cystes, which were growing and growing. No meds could help, no hormons, nothing….. Cystes were growing and growing. I went to dr M. (the first nice one) and because it started to hurt I was referral to another surgery…. Urgently. I wanted to consult diagnosis, so I went to Profesor in Poznan who specialize in changes on ovaries. He said I need a surgery, because the ovary is going to turn and die, that’s why it hurts. Profesors said that on NFZ (national health fund) I can have op in 5 days, privately tomorrow. So as you see it was urgent (in Poland urgent means 5-6 months, normaly min. one year). And of course thousands tests to do. I visited my Doctor who operated me for the first time, he said the same what previous doctors. During that time I was meeting with a guy who was 30 years old, and when I came back to the city I studied being, of course, sad and blue, my boyfriend told me „you are going to the doctors and pay for the appointments, you will be fine, I’m going to my friends”, and he left. With my ovaries was a risk that this is teratoma immaturum, what means it is malignant…. Well my boyfriend even didn’t ask if I want to go with him, idiot!

Anyway, my surgery was in the same clinic as ealier, my anaestestic was chaneged and everything went perfect. At least, there was nothing bad, but it was worth to do the surgery to be sure. Of course, like always, surgery was during my tests in summer, but I passed everything :)) I get also birth control pills to make my period regular and to not have pathological cystes again. But of course finding good pills for me lasted few weeks. On some I had bleeding between periods, on others I didn’t have period at all, on others my ovaries worked normaly… (hormons I received year ago, was called 'birth control', but was for changes on my face).

In the meantime, it couldn’t be normal for longer than one day, I started to have pain from different part of my body, jejunum.  My underbelly hurted me so much, sometimes unbearably, in stool was blood… So I went to another doctor. Doctor looked at me, on my belly, touch it a little and said IBS, because I am young it is nothing. Of course no tests. She gave some pills… Didin’t help.

Soooo, finaly came 3rd year on my university, the worst year on whole vet studies on my uni… morbid anathomy, physiopathology and other pathologies, farmacies, parasitology… This year was terrible for me. I had terrible pain, couldn’t focus, couldn’t remember, couldn’t learn, couldn’t do anything! Many times in a day I was looking in one place, couldn’t hear anything, couldn’t see… My head hurted worse and worse. In winter semester was worse, but I passed everything fortunately. You cannot imgine brain fog, lack of focus, lack of concentraction I had that time. 

On 3rd year I was going to the vet clinic. I loved it, I was assisting to many surgeries, then I met the best orthopedic surgeon who I assissted on surgeries too… But after this 6 hours of standing my feet hurted so bad 10/10, I couldn’t stand on them. My head…. God it was terrible. My shoulders were completly out of joints. But I still loved the clinic. I was trying my best to learn, walk to university and walk to clinic. But I needed to sleep. Sometimes I slept 20 hours a day and there was no possibility to wake me up. 3 espressos on one time didn’t change the situation. Learing was a torture for me. I completly didn’t remember anything, and it was worse and worse.

Thank you Ania and Patrycja that you showed me everything in clinic, for your patience and all help, and your consideration. Even when it started to be very hard for me, you were always supportive. Thank you!

Except of all of that I was still looking like a healthy person… My symptomes were invisible… only my eyes were swallen more and more. I started to forgot words when I was talking or what I was talking about…

In the middle of the year, to make a break, my parents and I went to Maledives. It was so great, my pain was smaller, I didn’t have to think, I was a lot in the water and I was laying a lot, when I was trying to walk I was very tired and felt bad. When we came back I didn’t feel rested at all but I was happy we were there :)

We went even on ski for small mountins for 2 days :) and I didn’t die because of the pain! I was having fun.

So when I came back every single day after lectures I was eating McDonald and going to clinic, which I loved. I was fighting with all of that instruments, patients, problems, new cases, trying to remember patients…. Trust me, it was hard for me. It is a lot of stress and I additionaly had headache. I think it was like you were working on hangover, that’s how I felt, because I had also a nuseas, oversensitive on sounds etc.

I almost passed 3rd year, only exams left. I was trying to learn on the second exams, but I could’t remember, I was reading one sentence 10 times and I still couldn’t say what was written in a book…. It was making me mad, depressed etc.. I felt like my mind was empty, but they my brain was checked, it was all fine! I have it, it is working…. But I couldn’t make it work. My parents convinced me to take one year of break and check what is wrong with my head. It was fight on the university, as I didn't pass 3 exams. But we found a solution. I believed that it is only one year, and after that one year I come back. 

In that year I had again EEG, another head and spine MRIs and many other tests. I was in Germany (Heidelberg), Switzerland etc. Still nothing. Nothing is that bad to give me pain. I have to go to psychiatrist, go somewhere without my parents (doesn’t matter that I lived without my parents for 3 years on univeristy, I don’t know maybe on the moon would be far enough from my parents for doctors…) and I should move more.

Once, when I felt better, I went with my brother on a party. In the middle I started to have problem with breathing, I tried to catch the air but I couldn’t. My lips were violett and I started to panic what didn’t help in my situation. I went out and with me my friend who was holding me, because it was hard for me to stand. When my brother saw me he decided we are calling for emergency. The ambulance came and doctor said that it is too much alcohol and… yes, you are right - stress. So they gave me something to calm me down. My breath get better, but I didn’t know what’s going on around me. The ambulance left and I lost my concious. One person didn’t drink so he could take me to the hospital. There, doctor said that I didn’t take any drugs (nothing new, I never take drugs, only those which I can, given by doctor) and I almost didn’t drink alcohol, but my thyroid doesn’t work well. Loosing breath is not common symptom but might be in that disease and I should visit endocrynologist and be careful. If that happen again start to look for a reason. Thank you doctor <3 There was one more thing… I had a bump on my head, I thought that maybe, because when I lost my concious I hit the ground, but the truth was that when my brother was trying to put me to the car was too drunk to do it correctly and hit my head on the car hahaha :)

Anyway, I get recommendation from doctors to go somewhere far away from my parents, so I went to Canada. Good I didn’t choose Australia, but there are animals that even I am affraid of ;) In Canada I have a friend who I went to and well… when I was there we started to dating. But let start from the beginning. In the plane was terrible until I lay down, then it was much better with pain and other symptomes. I was dying when I get to Canada and had to go to sleep. Well, when I was there my boyfriend completly didn’t have time for me, he was working till 7-8 pm even when he had to 4 pm (come on, maybe I am not miss universe but I am not the worst!), so I was spending time on my own, laying on the sofa and playing GTA all days. When my boyfriend, lets call him G, had free day, it was saturday, you know what he did? He went to Casino! And had no idea why I was mad! Another situation, I was mad about his roommate. It was a girl, but that doesn’s matter, when G. was comming back home, he was talking to his roommate, telling how was his day etc. I didn’t feel like his girlfriend at all! And the best thing, G and his roommate wanted to adopt a dog… Maybe I am different, but doesn’t that mean they want to live togethet for few more years? Another argue, but I am the one who was guilty and none knows what I argue about. Anyway, on the end of my stay, G. and I were supposed to go to Mexico, but not only us, also his Mom (great woman, I still love her), moms friend (I still hate that woman), Gs friend, and friends cusin and her friend. So quite a lot of people. 6 hours flight was so terrible even if I was laying. On my chicks were tears all flight, G. was trying to help me then. On the beginning on holidays was quite nice, but then, G.  said I’m eating like a cow once…. another day that he wishes that next to him was sitting sexy girl… And he was telling me everyday that this trip is for his Mom and I am additional there. So not the last, but before last day trip finished with terrible argument. Of course for everyone I was that one who was bad. I told my mom about everything from Canada till Mexico and my Mom said I have to come back ealier. Being in plane to come back home was terrible as well, because of pain of course. Yeah that wasn’t the perfect idea to go to that direction.

You, my dear readers, think I’m crying baby, right? It’s ok, I wrote the story that way, because i write only about bad things. Mostly I was crying at home, because of the headache and outside I was showing everything is ok, well I was trying. In vet clinic I was always happy, I loved my studies even if that was giving me a lot of pain not only physicaly but also mentaly (on pathological anathomy teachers tried to show us how stupid and terrible we are, our EGO was going down very fast :)) and even when I felt horrificaly I belived I finish this studies and become a vet how I dreamt from early childhood. There were many good times between all of that.

Anyway I hope you understand me and the argues in Canada. My anger in Mexico was caused by so many things - Casino, housemate, no time for me at all, ‚eating like a cow', ‚sexy lady next to’ etc…. 

After Canada I went to Switzerland to some tests, with my Mom, then to Germany for the same. Doctors didn’t know what’s wrong with me. Diagnosis „This cannot be migraines, this is tension headaches”; „This cannot be tension headaches, this is migraines”. And giving pills without any tests… During those 5 years I was taking Depakine, Propranolol, Pregabalin (Lyrica), Gabapentine, thousands (maybe millions) of painkillers, hormons for thyroids, on my ovaries etc. My stomach gets ill so I had to take pills for it too. I always had nusea, stomachache etc. My parents were getting angry… how many times during the day I can say I have nusea… After everything I ate.

I have been also to few doctors in Carolina Medical Center, I had another spine MRI there  and still nothing, some degenerations, low high on C5/C6, there is no disc there, no lordosis and cervical spine is going to a kyphosis… Nothing special, it didn’t fit to my age but it wasn’t that bad to give me pain, for doctors is ok. But I can go on physiotherapy (Yeah for whole that time I havn’t been on any….)

But the physiotherapiest was very good in CMC, to be honest…  He found a way to take my pain away, first time after 5 years! He just pulled my head, normal traction. But let my head back on place was giving me pain like 9-10/10…

Except of headaches I also had nusea, strong stomachaches, shaking hands, sometimes so strong I couldn’t drink from a glass because I was spilling everything, I had blurred vision, everything had a shadow in my eyes, even a wall.. and many other symptomes which was written post ealier, so any doctor could connect it to one disease.

Finally my neurologist J. saw me after few years (normaly my parents were going to him) when I came with a terrible pain, with eyes like Chinese (they were swallen) and with my mouth distorted because of pain, it was on the end of 2014. Doctor said that there must be smething wrong in real because my face looks like I’m in pain… Ealier was always „There is nothing wrong”, „it is just stress”, „you will kill her with all those tests”, „What are you thinking?!”. Doc gave me gabapentinum, which, to be honest, helped.

In the meantime I was consulting all my MRIs with my family friend radiologist. We have met him few years ealier on ski and become a good friends. With time everyone had theirs own things to do but we were still acquitances. But after all we thought he will help us. Unfortunately, he didn’t, he shortly looked at the pictures and said the same what was written on my report - lower high on C5/C6, some degenerations of vertebreas and discs, no lordosis but kyphosis on cervical spine, but all of that was not important for him, even if I was too young for that changes. He didn’t want to explain anything we asked and said that there is nothing wrong with me and my parents should take me to PSYCHIATRIST.

Of course finally I went to Psychiatrist, who said that I am oversensitive and all of my symptomes comes from the stress (muscules on my shoulders were like a stone) and I should take antidepresants… It didn’t help for my headaches…. And I still don’t like my psychiatrist.

In January 2015 I had an appointment to dr Z. in Carolina Medical Center in Warsaw. My parents were almost sure that I have hypochondria, so in argue I said I give up and this is the last appointment, then I will only be treated by psychiatrists. Dr Z. was the first doctor who said „if something hurts so hard for so many years, even if you do what you love to do, and a girl cannot go on shopping, there must be something wrong, and we, as doctors, should look for a reason”. He also said that it is good that we are going to so many doctors, someone will have an idea what is wrong. We were in his office about 2 hours… so outside was huge row, because none wants to wait for their appointment. Anyway, I was laying on doctors desk, when he was looking on my CDs with MRIs etc, and in one moment doctor said that in my head is a small anomaly, he sees that for the first time and has no idea if that gives any symptomes. That was a small bone which divides foramen  ovale on 2 pieces. That i have some white spots on my brain. He said he will also check the visible part of cervical spine on head MRI. Neck was fine so he wanted to show the anomaly again. He was going up by his mouse and the mouse blocked imidiately. It didn’t want to move. Then doctor looked at the monitor…. and said „here is a break, here is a fracture, we have to do a CT scan!”, the mouse started to work again ;) and doctor was scrolling and telling „immpossible, immposible, on C1 is a fracture”.

In that moment I stopped having headaches and just sit straight looking at the doctor and my mom layed down on a desk with a headache :)

I called to my neurologist, dr J from Zielona Gora and said 

„Hi doctor, are you standing or sitting”, 

Doctor „I’m sitting, well standing, to be honest I’m walking, what happened?”

„I have C1 fracture”

Silence…

„OooOoOoo it fits!” :)))

Right after we had an appointment to some chairman from headaches in Poland, he was in Łódź (don’t try to read it ;) if I translate it, it’s a „Boat”) who wasn’t so nice and said that headaches are not from the spine, there is no fracture (doesn’t matter if he didn’t see the CD, because it didn’t want to open on doctors computer) and I have normal migrain. Do someone has a gun? Really.

In Carolina Medical Center I had an urgent appointment on CT scan of my neck on the next day… and then on the report… C1 fracture which has never healed on the right side, on the left side Kimmerle anomaly, C5/C6 with so many big osteophytes, completely different shapes on C4-C6…. And much more smaller things like Schmorle nodes on every vertebrea on every side, small osteophytes on other vertebreas etc…. 

What next now? I liked Dr Z. of how was he thinking… but I had to go on appointment to Profesor Z. (he is the head of the neurosurgical ward in CMC), who specializes in pain stimulants and that’s what he suggested me to do, of course! I do not blame him, this is what he does the best, but it wasn’t a treatment for me. I am thankful that he wanted to help me the way he could.

Here I would like to thank the whole team of doctors from Carolina Medical Center in Warsaw, special thanks to dr Z., who found I have a fracture in my neck. Thank you  all for what you did for me, without you I wouldn’t be here anymore.

Then I had an appointment in  Switzerland - „oh my God, what a wonderful CT scan (CD z CMC), I have never seen visualization like this before. And what a fracture, this I have never seen as well!” so that would be all of treatment in that clinic, and trust me, this clinic looked wounderful, doctors office was so big, that there could be a restaurant for 40 people! But the most important information I get is that CMC has a wounderful CT scan ;) I like to watch those pictures as well, but money from a plane I could spent on shoes.

Then I went to Heidelberg, and there was prof. H, neurosurgeon, great man, he wanted to do a surgery on C5/6, he was almost sure that there is a problem. But he said that I had never tests for MS, study of cerebrospinal fluid etc. and he would like to be sure if it is all good before surgery. ’Huge mr profesor’ , the neurologist, who was the most important doctor in the clinic, said that my symptomes are just because of a normal stress and said that I should go, where? Yup, to psychiatrist, because my briefcase of medical test is too big what means that we go to too many doctors, only God knows why, and my mom is oversensitive, and why she even is with me in his if I am 22? He also said I should go for a week or 2 to a place where treat migrains, near Frankfurt am Main. We went there right after, everything perfect, but patients there were walking every single day about 7 km on hills… I was dying after 100 m. Besides of that, they were doing yoga and getting calm.

My brother, who was fighting with me for months to come back to Charite, won, and sent the pictures of the C1 fracture to prof V., who said that it looks stable and there is nothing he could do there, but he knows great neurologist in Charite. Trust me I was shaking, had huge headache but different one than normal and was all white for the word „charite” and to go there was making me feel much worse… But we went, Profesor neurologist said it is so easy that the other neurologist, doctor, can go on an appointment with me and he has broken arm, so he needs rest. She made a diagnosis right after I said I have headaches. Neurological test didn’t show any patologic, only that I do not have feeling on my back and hands and I do not feel the vibrates. My Mom left us for the time of testing. I was fighting with Dr DB that Prof. V has never seen the full CT scan of my neck and I kindly asked her to show it to him, she finaly agreed! What I’m thank her for.

Between all those appointments I visited neurosurgeon, dr J in Zielona Gora, the place I live. He was very kind and nice. This professor really wanted to help me. He said, that the most important is to stabilize C5/C6, but maybe it would be better if I see prof S. from Szczecin. Unfrotunatelly, making an appointment was very, very hard, so dr J from Zielona Gora decided to help us and made an appointment in hospital in Szczecin. We went there few days later. Finding doctors office was hard in so huge hospital, but we finally did it. There was none around. I, of course, had to go to the toilett (now I think I have something from males, I have to mark every area I’m in, I mean to go to the toilett everywhere - like an animal. I know human is animal as well but you know what I mean ;))

Office was still closed when I came back… And there was none to ask, where we can find dr S., so my parents and I were walking like an idiots around the whole hospital, asking nurses, doctors, patients… None knows anything. Finaly we found a person who said that we need to wait, because Profesor is making a surgery. So we, with a lot of tolerance, came back to the hall outside the office. It is understood Profesor doesn’t stop his surgery, because ‚princess’ came ;). looking at my cat sometimes I think she is a princess… or maybe a queen ;) We were waiting in the hall. I would like to tell you that there was no sofa, no chair, no stool, well nothing we could sit on. Not even a table. So we were sitting on the floor. One hour…. Two hours…. Three hours… Finally someone came, and few minutes later came prof. S. and said, that there is something more he has to do, and there is patient who is open on surgical theather and it will be better if we will go to eat something and come back in an hour or hour and a half. Sooooo finaly some information! We went downstairs to hospital restaurant/bar. My head was about to blow up, I never could sit or stand longer than 10 min. We came back after one hour. Profesor came around 5 pm, so he was 5 hours late!!! The appointment lasted 10 min. Professor said that C5/C6 is stable, but problem is on C4/C5, that level is instable and he would do fusion here. C1 is not a fracture but anomaly and shouldn’t be moved as it doesn’t give any symptomes and it is stable. To be honest after waiting so long I was exhausted… Profesor waas absolutely right about C4/C5, but I didn’t want to have surgery in that hospital. There were more patients than rooms and some of them was with their beds on the ward aisle…. And I had to wait a year for a surgery. I am very appreciative for Professors time and opinion, it was extremly nice of you to make a special appointment for us.

Now I don’t really remember, who was first, but I think Professor H. from Bydgoszcz…. I didn’t want to go, because the appointment was made by contemporaneous brothers friend, so my lovely Parents went. Professor H. said that there is very important to do a stabilization C4-C6. Prof. was 100% sure. Thank you professor to admit my parents without my present and your huge help.

Finally we went to Berlin, to Prof. V, there we had to wait ages as well for the appointment, but on chairs, not on the floor ;) Prof. V is a wonderful man. This what he is doing is not human, trust me, he must be some alien (I say it in possitive meaning). Do you know that Professor did a surgery to a man , whos headaches were caused by anomaly in nerve and artery in his head, which were laying too close to eachothers? And that artery, when pulsating, was touching the nerve and give a pain! And Professor V. covered the artery by teflon and artery stopped irritate the nerve and patient stopped having his headaches. You see? Professor is a MASTER, and I’m completly in love with him <3 (In love with Profesor V. not a patient, just to be sure).

So Professor V said, we must do C5/C6 and should be better. And I just trusted him the most ;) Professor was soooo suprised when I took my decision in a minute (I was suprised as well, but it wasn’t my first decision about surgery, I was getteing master about making this kind of decisions! - I know many people had much more surgeries). We set a date on 29.04.2015 (For Americans 04/29/2015 - I completly don’t understand why people write a date that way… About time should be hours:seconds:minutes?). So about a month from the appointment, because Professor was going on holidays :))) yes, doctors are going on holidays as well and we should be patience about it  :)

The surgery was on time (I mean the date, with time it was much worse), I woke up after and….. i didn’t have headache!!!! I was almost running around hospital day after so doctors let me go home 3 days after surgery (I would love to stay longer if Professors came to visit me;) but he didn’t) being in super good condition. There was only one small accident in hospital. When I was turning on the another side on my bed, I leaned to much on my head, there was a crunched, hurted a lot and it was still fine. I told about it to my doctors, but I was told that everything is fine and there is no need to do another x-ray. So I went out super happy, that in few weeks I won’t feel pain in 100% as I still had it when I was walking, then when I get to the car, also in riding etc. But for me it was like „nothing is wrong, everything has to heal and all the pain will go away”. In one week after a surgery I stopped taking any painkillers.

Recommendation after a surgery was *do whatever you want, but do not turn your head for a month*. Well it was nothing for me, as I didn’t turn my head anyway from childhood, so perfect :) All the left pills I was taking ealier I wanted to burn  and what rest put to the cosmos to the sun.

So I began to have a boyfriend, going on parties and just having fun… Pain was only when I was moving. I thought it is just corelated with the surgery and will go away in time. But it didn’t. When I still felt fine my family and I went to Mallorca, it was so nice, sweet and warm… So we had nice, sweet and warm breaking in car and I hit my head on front chair. My eyes become wet in a second and pain was unbearable. Then my constant pain was comming back. I did X-ray but Prof V. told me it is all fine, my dad was telling that it looks different than on the beginning… Then there came time for post op appointment and I said to Professor that everything is ok (don’t know why I said that, I should tell him the truth), we did CT scan and Professor said my spine is healing well. So I thought my comming back constant pain is just temporaly and I didn’t tell Professor about this pain. I just said everything is fine, as I was affraid we come back to the migrains and tension headaches. I felt that the spine is the reason. I came back straightly to Mallorca as Professor said that it looks as it’s healing so everything was correct, right? But in a plane to Mallorca I already knew the pain came back, it was terrible in the flight. On Mallorca I thought it might be sinuses again, so doctors there did the CT scan. Sinuses almost clear, but C1 is twisted (I didn’t know about that) and broken (what I knew). Prof V. said everything is fine, nothing shows any big changes… I think that time Professor hated me as I was writring to him all the time with the same he was telling me it is correct and I still was doing new pictures… ;) My head hurted very bad so Professor decided I should go on physiotherapy.

I made an appointment for 2 weeks of physiotherapy near Łódź (don’t try to read it, again - Boat :)). I took my grandma with me, as she has terrible problem with her shoulders and needs physiotherapy as well. There, on physiotherapy, I met a lot of very nice people, those who came on physiotherapy and physiotherapiest. In time everyone was getting better, and I was getting worse and worse each day. I couldn’t sleep, my headaches were stronger, the more physiotherapiest were trying to fix the worse it was, my eyes were like I was chinese (in pain my eyes swell)… Physiotherapiest really tried to make me feel better, they knew doctor C. from Poznan, physiotherapiest I was going to ealier, wonderful man. He was helping me a lot, but time between all appointments were so long that this help didn’t have sense. That’s why I was looking for someone else.

Anyway, one physiotherapiest in Physiotheraphy center found out my legs are very tens and he did something that they get much better! You cannot imagine this feeling when your muscules, which were in pain for so many years, not hurt and you finally don’t feel spasms…  But legs were the only thing which got better. Unfortunately when someone tried to move or train my neck I felt terrible pain on my head. The master physiotherapiest promised me he will talk with dr L. (neurosurgeon), who will consult all patients on the end of our stay. 

On the last day came dr L. and master physiotherapiest took me and my grandma to his office. Doctor took a look of my CDs and exactly knew where was a problem. My cage (implant) has collapsed, C1 is not stable, is broken and ununited, the bone touches occipital nerves and he would advise the full fusion C0-C2,3 (so to connect my neck to my head). I had tears in my eyes… Doctor suggested then to cut the occipital nerve after which I won’t feel the pain. It was easier to agree for. But later other doctors told me it is not the best idea, because many people have stronger pain after.

I was told to do the full spine MRI and with inclination and reclination of my neck. I did it and when i saw the result I was terrified. Thousends of changes in my spine; instability in my neck, dyscopathies, degenerations etc. I received the result in my brothers office and couldn’t keep my tears, but everyone looked at me with understanding.

After all I wrote to Prof. V. who told me, that the implant hasn’t collapsed and everything looks fine, so the mails looked like this:

• It has collapsed
• no it’s not collapsed
• it is
• no, it isn’t

Profesor finally asked about MRI and my brother contacted him (my brother could do anything to help me). My brother heard as well that everything is fine, Professor told him to send MRI and after he receive it told my brother to come. Then Professor made sure I will come the next day, what was completly unexpected :)

I went. Of course on the begining was meeting with a young doctor, who did a test and pre-interview. So I said that my head hurt, hands shiver, I feel tingling in my left „paw” etc. And the test showed my left hand is much weaker than the right one. But looking on the MRI young doctor said that with implant everything is ok and the bones are almost healed. He told me to wait few minutes for Professor to come, because I already started to ask difficult questions :))

Prof. V. finaly came, nicely welcomed us like always and… almost run across his office to his screens with my MRI pictures, saying really quietly „implant has collapsed”. So we started to discuss what to do now. I told Professor, that dr L. suggested to do C0-C2,3 fusion, Prof V. was wondering why, if my atlas (C1) is twisted a little and broken, but in general stable. So I explained Professor, that only one part of pain disapeared after surgery, but when I was moving I still had a pain. We decided to do the infiltration to C1 and between C5/C6 to check where the pain comes from. Believe me, not many doctors care of their patients and have so much of humility as Prof V.… I love you Professor!

The infiltration had place in December in 2015, doctor used lidocaine as an injection. First was on C5/C6, I came to the operating theater in a cap smiling. I sat on a chair, doctor get prepared himself and came to me. He asked me why I’m shainking so hard, if I’m stressed and I explained I’m so cold, so Professor gave me some warmer smock and muffle me on <3. A world-renowned doctor who muffle his typical, indistinctive patient on, because that patient is cold <3 do you know other doctor like Prof. V.???

Infiltration didn’t hurt over time at all. But when I was comming back to my hospital room I was faltering on my legs (I was walking alone, on my legs not on „wheel-legs”). When I was already in the room the pain was so strong I couldn’t stand anymore and I just sat down on the floor. The dizziness were so strong I had no idea which of three people in front of me is my mom. I chose the middle one. I guessed, that’s my mom :) We came back to the hotel, but even after few hours the pain was very strong and didn’t want to go away. I wanted to cut my head off and hold it in my hand (like the pirat in the Pirates of the Caribbean part 3).

The other day was better, but not much. My mom and I came back to the hospital. I received a room again, courtesy of Prof. V. … Later that day I went again to the operating theater on another infiltration, this time C1 and suboccipital nerve. Surgical procedure went fine, but after every move the pain was incredible. The pain was so strong I felt it like someone hit me on my occiput with a hammer with every step.

Professor said, that if there is a change, not expected one, but still, after surgical procedure, it means the problem is on both levels. The decision was - repair C5/C6 and cut the posterior arch of C1, to prevent the nerve. We set a date of surgery on 30.12.2015 . But I couldn’t politly waiting for it, right? It would be too easy.

My mom was looking for the reason of my other symptomes and one evening, we (my parents and I) were sitting on the coach, everyone on his computer, and my mom says „Ewa how can you bend your hand? and on the another side? straight your elbow, and another one… Can you touch the ground with your both hands with streighten knees?”. My mom was reading about rare genetic diseases and found Ehlers Danlos Syndrome. Since then all my symptomes started to have sense, even those I havn’t written about here, because I wanted you to know the same what doctors and my family knew that time.

Hipermobile joints I had since early childhood, split was never a problem for me, all the subluxations, dislocations of joints… Problems with digestive system, breathing, viewing, dizziness and others.

I went to geneticist, dr AJ who affirmed diagnosis of EDS and told me to do densitometry. This test showed I have osteopenia, what explain the collapsed implant. My bones should heal like on a dog, but how my bones heal? Well they doesn’t, everything is falling apart, lovely… Another thing I was supposed to do was Upright MRI. The closest one is in Hamburg, should I remind anyone it was a week before Christmas? Good we made an appointment 2 days before Christmas Eve not on Christmas Eve, what was most likely. (To Hamburg from my city is about 500 km).

Upright MRI showed, except of all degenerations, there is subluxation, luxation of C1, instability on C0-C7, movement even on C5/C6… On C1 there is alar ligaments failure and somestrangename ligaments failure… 

Thoracolumabar scoliosis, instability on Th12/L1, discs dehydratations, Shmorle nodes, discopathies and other problems…

I sent the CD with images to Professor V. (it all happened between infiltrations and planned surgery), who wasn’t very happy to see them. We had to cancel surgery, because we couldn’t do hemilaminectomy (to cut half of posterior lamina of C1), because that would increase the instability.

Professor also reads e-mails partialy :) I wrote him, I have Ehlers-Danlos Syndrome and something else, Professor replied yes, yes I know, and later when I wrote about something else just mentioned about EDS like 30 times talking about something completly different, dr V. answered „you didn’t tell me you have Ehlers Danlos Syndrome!!!” :)

So by e-mails and one meeting Professor and I decided rather than hemilaminectomy we do C1/C2 fusion and C5/C6 like we talked ealier, even if other doctors suggested to do C4/C5 as well, because there is quite big instability, but I trusted only Prof. V! The surgery was supposed to have place on 14.01.2016.

On New Years Eve I received patches with buprenorphinum, what helped for the tracksuit party at home, but then… I was sleeping… and sleeping… on 3rd day of sleeping I started to have so huge breathing muscules tension I thought I’m going to die. But after few hours without a patch the symptomes disapeared. So the New Year I outslept :)

In the meantime Prof.V was writting e-mails with my mom, that maybe we shouldn’t do the C1/C2 fusion. I knew about those e-mails, but Professor V. didn’t know I know.

Just before surgery I received genetic test I still have coeliac disease, lactose intolerance and DAO defficiency… Even doctors were suprised of sow low DAO level in my body. So I become gluten-, lactose- and histaminefree. On the beginning was terrible, but now it is not so bad. The worst is out, when my mom doesn’t cook <3

Finaly came 14.01.2016, so longed-for day, because, as you remember, after first surgery was so good I thought after this one will be even better. Just before surgery came Professor V., my love <3, fully prepared, even with a scalpel… hahaha ;) just my imagination :). But Professor was real and asked me if we do only C5/C6, because he talked to my mom only and he needs to be sure :)

Unfortunatelly I woke up with terrible pain… of head and shoulders. Another time, uncontrollable. I received some drugs and fell asleep again… I woke up with my head down and billions of people around me. Again my heart get crazy. Venerable Mr Anaesthesiology Professor probably didn’t see my documents and the info about EDS and DAO defficiency. Who cares… I look normaly, so I must be healthy, right?

Terrible pain and body poisoning didn’t go away for days. My mom had to fight that I am allergic to pylarginum (metamizol). After a week I could go home, but Professor V. wanted to meet me before I go. My parents and I waited few days in a hotel, but the meeting didn’t change anything. Professor said we have to look, ask, meet other doctors and maybe someone will have an idea what to do with me. We said goodbye and promised we stay in touch.

At home I had terrible stomach problems, defecation problems, stomachaches, vomitts (fresh juice made by my mom from eco-beetroots was in my stomach max 10 min… it supposed to be huge vitamine dose. It didn’t work).

My mom tried to prepare new and new meals for me, I felt so sorry for her, because I felt bad after everything, nusea and vomitting were death-dealing. Try to make a meal with no histamine, no gluten, no lactose and, of course, no meat. You have no idea how big arguments we had, because someone ate a cheese or tomate, which I couldn’t. I also felt terribly bad, because of pain, surgery which didn’t help and everything was jarring me.

There was also a time my headaches was becomming worse in standing. Vertical position was giving nuseas, vomits, faints, terrible pain, rainy nose and laying down was bringing huge relief in few seconds/minutes. I’m telling you, I am a fucking princess. Everyone was giving me everything I wanted in seconds, just to keep me laying. Worse when I had to go to a place, where even a King needs to go alone. After I came to the toilett, I didn’t know I should pee or chuck.

My parents finaly said I need PE. We chose dr K. Dr K is really nice guy, who wanted to know about EDS everything possible, he was looking, reading, listening what was completly new for us. But I am not his only one patient, my disease is very complex and it is hard to know more about it, so dr K. was listening what we wanted to say mostly. There supposed to be another specialization in medicine - Ehlers-Danlos Syndrome :)

But the most important thing was to find someone upon pain, but thankfully in my town is a tremendous doctor. I received fentanyl, which was helping for a pain a bit, and I wasn’t alergic for it. Doctor set my pills up and everything became better. Appointment once every month. We received e-mail address to Doctor, if anything was wrong, we could write and Doctor promised to reply always.

We went also to Dr J., the neurosurgeon from my city, who helped me so much ealier. But this time he wasn't so nice. Dr said, that life is not fair, why I even look for someone who find a way to help me. I should stay at home, laying on the floor and wait until the pain goes away. Trust me, I have never cried on doctors appointment, every diagnosis I was taking calmly, and eventualy I cried at home a little. But this time was a huge waterfall from my eyes, when doctor was saying my parents have THIS kind of car (a little better than most people have) and life is not fair so I cannot have everything. If I feel the pain that means I'm still alive! Doctor also said that doing both surgeries was a mistake... and that's the reason I suffer now. I supposed to do nothing in his opinion. I told him, none from my city did anything to help me.

When my dad found out what has happened I thought he's going to burn whole clinic, but law doesn't let us do this.

Because of urological problems I went to our familiar doctor H. from Zielona Góra (my city). A little bit ealier I received a result of genetic test - multiple epiphyseal dysplasia. Dr H. said, that statisticaly I cannot have 2 rare diseases, so I'm lying or result is lying. He took pictures of my hipermobile joints. Doctor was completly not intrested of urological problems and test results. We talked also about my C1 fracture. Doctor was looking at me like I was an idiot, when I told him C1 has no vertebral body, because every vertebrea has. When I told him dens of C2 is C1s vertebral body, he looked like he reminds himself something and started to talk about something else. But I will never forget how he was laughing at me :) But I didn’t receive any information about urological problem :(

Have I said every appointments were in every few weeks? Between them I was laying at home, on the coach, doing nothing. Every day started with a shower, wearing trainging clothes and lay down on the coach under the blanket, better day was with computer and tv, worse with a phone in my hand and tv, worse than worse was with just looking stupidly on tv, almost the worst laying on the floor, the worst, pain 9-10/10 prone position, fully under the blanket, crying, in a dark, with warm patches on my neck, neck brace etc… I couldn’t meet friends, even if I was having a meeting mostly in 99% I had to say I cannot come, that was for years. Even on my univeristy I didn’t go out, I had terrible sensitivity on noise, I had chronic fatigue, I always felt like on a huge hangover. I apologize everyone because of canceling meetings all the time, I know it seemed rude, but I really wanted to go out… but I couldn’t. I always had hope this time I can, but always pain and fatigue won. That was making my depression bigger.

Because of depression and when I had no diagnosis yet I was going to few psychologists, fortunately year and half ago I found one I wanted to meet and talk to more. Mrs I. She helped me with breaking up, how to deal with men ;) and how to fix daily problems. About depression I’m going to write another time. Now I’m kind of mad to Mrs I, because we stopped talking about important stuff and started to talk about being vegetarian, she was telling me human was prepared to eat meat, and I don’t help animals when I don’t eat them etc. If I wouldn’t eat cucumber would that be so intresting? And I got to know I have neurosis not depression… A person like me who can puzzles for hours, read books and laying and doing nothing has neurosis… OK. So we had a small quarrel. We didn’t talk for few weeks, then 2-3 text messages and quite from Mrs I side. I have to say she helped me a lot and I have good memories, but in that situation she let me down.

In the meantime I have met Professor K. from Poznan. It was written in internet he’s not nice, rude, unkind and will kill you whenever he sees you etc., but for me he was like dr House from the famous series and I fall in love with him completly. On first appointment my mom was alone and the more she was talking the more diagnosis doctor had. They were talking about all reasons of headaches when my mom was telling my medical history. On the second visit I had to be on my own and tell him the short story of my disease (I will write a book ealier than I wrote a short story…). Doctor gave me his e-mail to contact and gave me number to his friend, neurosurgeon, who doctor made appointment to during our visit. Isn’t he lovely??? How many the love of life someone can have? I’m in love in my new neurologist and Professor V. from Berlin, neurosurgeon…

We went to Professor J. (neurosurgeon from dr K.) and were waiting in a que but more time we spent inside, because of the lenght of my medical story. So I have craniocervical instability, I should do fusion on C0-C2, C1-C2 is not enough and wouldn’t be helpfull for me. I came back home and didn’t know what should I do. But I was kinda happy, I know it’s unbelievable, but I started to believe all my issues will be fixed one day and the pain will disapear.

So I contacted Professor V., then had appointment and Professor said honestly I am his first patient like this and he has no idea what to do with me. This is a real guy with balls, not an idiot who thinks he knows everything. Professor V. have huge respect from me because of being so honest. We decided to do C1-C2 fusion and to cut processus spinosus on C5-C6. Professor was charmy and handsome as always <3 ahhh so bad he has a wife ;) The surgery was supposed to be 12.09.2016.

From February 2016 I have had symptomes like I had a flu - dizziness, cold sweatness, seizures, whole body shivers, I felt cold and hot the same time, I couldn’t feel the outside temperature normally. Joints pain was terribly bad. And I had no menstruation since February to June. I felt like a woman after menopause. I went to neurologist dr SzJ, he found out my hands shivers really bad, and I have subacute combined degeneration of spinal cord (not sure if that’s a correct name in english ;)) with high level of vitamine B12 (in that disease should be very low) ;) I have to be different. I received hydroxizine to get calm. After I was sleeping so I didn’t feel the bad symptomes, what is good. I like dr J, he doesn’t pretend to be world famous Zielona Gora star and he knows how to climb down and how to admit he doesn’t know something. I really appreciate that kind of behaviour, you have to have balls to do that.

For my symptomes was helping fervex (polish medicament with paracetamol - tylenol - for flu, cold etc.). I also get antibiotic from my PE, because my throat looked terribly bad and inside was everything (figuratively, but not at all). I get better so we went to Mallorca (work). Flight was terrible for me, day after I was sleeping all the time, none could wake me up. Another day flu symptomes were so bad i was leaving wet marks everywhere I sat (I didn’t pee, despite of what you may think I was just sweating a lot;)). I was freezing inside and joints pain was like 9-10/10, like someone put small gelly balls inside them. Pain was unbearable. „Mallorcinian” doctor said I have to go to the clinic, because none can help me at home. When I came, doctors after quick test told me they want me to stay in hospital for few days. I felt so bad I couldn’t sit, stand, lay or fight with them. I quickly received a bed, and on me was 4 blankets, my moms palto and duvet and still I was shaking because of cold. I was receiveing drips with salt, glucose and paracetamol. None knew what’s wrong with me, test results were perfect, seemed like there is nothing wrong with me, but my pupiles were so huge, my iris was almost invisible and the sweating was undeniable. After a week of receiving drips I could go home because I felt better. They let me go in a day of flight back. Day without drips made me feel worse again. I didn’t do much on Mallorca ;)

I came back home and all symptomes came back but twice worse. My mom went to hospital to ask what to do and then came back for me. After I went in I received bed and blankets, because I was shaking so hard I couldn’t stand. Again all tests went OK, I received only drips with salt and became better… I went home feeling fine. The problem was that I still didn’t have diagnosis of my symptomes.

Third time my symptomes became so bad, I was crying laying. My blood vessels didn’t work, when I was laying on the left side my right side was freezing and conversely. My heart was pounding, blood pressure was 80/40 or lower, pulse about 120-150 per minute, other symptomes like above. My mom took me to hospital to the town nearby. I do love that place, seriously. Doctors changed my fentanylum to tramadol to check if that’s not an allergy (it was also suggested in previous hospital as well or titanum allergy), I had my own room with a toilett <3 (in all 3 hospitals). Day after I came and after giving me a lot of painkillers, came few doctors on consultation. There was Mrs Cardiologist (The main doctor on internal unit), Mr Nephrologist, Mrs Rheumatologist and GP. Again I was telling the same story of my health, but now doctors were asking some questions, very good and relevant. First time someone asked me what I THINK what’s wrong with me!… They decided to do some more tests and that I should be checked by neurologist. When I could go out from hospital I was taken to neurology unit in Poznan.

My mom contacted Prof. K (aka dr House ;)), who acacquiesced to take me on his neurological unit. I was taken on crisis stabilisation unit. Professor gave me a diagnosis - Dysautonomy because of Ehlers Danlos, but doctors from ward was of course more clever and diagnosed me with dissociative disorders and observation towards drug-induced headaches…. Gun, give me a gun.

I get pills from Prof. K and become better finaly!

I went to Mallorca, because I had some work to do. Thanks for all people who works with me there for your patience… Really, rarely I can do something on time, because of pain and moving delay (it’s not visible on the first sight but you can see that when I get ready. The same actions my mom does in less time than I do).

On Mallorca I have a good uncle, I don’t know, if I can write his name, because he is a famous pianist… He organised Italian Film Festival with Gabriella Carlucci, it was great. With my wonderful uncle I was also talking about Great Neurosurgeon from USA, who treats people like me, with EDS and spine instability, but waiting time is 2 years, the same to geneticist from USA. My uncle called and i get a number to a friend of geneticist, who is a geneticist as well, but from Belgium, Europe. I could have an appointment in 5 months (that talk was in January and in May I had a visit - doctors there told me I have big joints instability, checked EDS out and gave me splints for my fingers ;)). In June my uncle has talked with American Neurosurgeon and a moment ealier someone abandoned a place so I could come on that place in 2 weeks!!!! What should I do then?… I had to go.

But because I’m polish I needed a visa to USA, I was on Mallorca, consul in Poland, and a plane…. somewhere in the cloudes. Ok plane is, and they even said it will be on the ground and we can come in on Mallorca and it takes us to the Frankfurt am Main and then another plane takes us to Warsaw. And we supposed to have one hour before meeting a consul. The plan was good, and my mom and I were even on time for the plane to Frankfurt, problem apeared later, because we get late for a plane to Warsaw. No, not because of dute free. We were running straightely to the gate and we were late about 10 seconds, last passenger was going in the plane when we came. F*ck. Then we had to find another plane, but we were not able to be to consul on time. I was calling to consulate to ask them to wait for us, because we have to get the visa, because of medical problem, because we please. They won’t wait. But we won’t give up. We found another plane which gives us small chance to be in Warsaw on 13.30, consulat is open till 14:00 and till that time we could come…. we were 2 minutes late, but they let us in!!! But it was not because of my charm, or my mom’s charm, but because my dad was inside (he wasn’t with us on Mallorca) and asked them to give us a chance. Well because of my brace we didn’t have to wait so long. We received visa and could go to USA (what was between that time is not important - packing etc.)… ;) My visit to Professor H. was on 11.07.2016 (11 of July 2016) and that’s the end of my history ;)

PS. 

The only thing I wanted to add, that I was going to many incredible and less incredible physiotherapiest, but now I cannot put them in time, what I’m sorry for. Mostly they were in my home town, Mr P., Mr M. and many others. Famous doctor C. from Poznan, I had a visit in Nowy Dwor for 2 weeks in Poland. Mr T. from Wrocław, physiotherapies from CMC. Many of them were telling me something is wrong, there is too much movement under their fingers on my spine and other joints…. But medical doctors don’t want to listen to people, who spend more time and meet more often with patients, and get to know much more things about patiens. But doctors think they get to know more in 10 minutes visit! Thanks to all of you who took care of me with better or worse result. I know all of you tried your best to help me. I would like to favour two physiotherapiests, a man who was working for Carolina Medical Center that time, for his unwonted methodes and traction on my neck, what confirmed instability and my actual physiotherapiest who treat me everyday and doesn’t deny my ideas of treatment :)