Doctors couldn’t find any explanation for the 34 years old Dora’s mysterious disease what’s taking her life away bit by bit. The beautiful young woman suffers from an unidentified rare disease.
“It literally feels like there is a huge bomb exploding inside every single minute or a knife is stabbed into my brain through my ears…”
– Dora says.
Please share with us when and how your story started…
My story started 3 years ago when I woke up with an unusual pain in my head. I started to have a very loud and weird crunching noise inside my head during every single swallow and it comes with sharp pain. I knew that something went really wrong inside my skull…
Did you have any early warning signs before or it just appear from the middle of nowhere?
The pain itself started out of the blue, but I did have a bad wisdom teeth surgery months ago before the pain. After the tooth surgery, I went to see some specialists and they believed that the joint of my jaw got injured during the operation and the surgery must have destroyed some of the nerves/muscles or inner ear area. It was a bad side effect of the tooth surgery, but it was just an uncomfortable pain compared to the pain in my head that I woke up with months later.
Did the symptoms get better or worst or it is the same since the first day it appeared?
It got worse day by day. In the beginning, I did not pay much attention. I thought it would go away. But very soon this crunching became so loud that can be easily heard external as well. The pain got also so unbearable that I immediately had to start seeing specialists and taking heavy drugs in order to survive.
You visited many doctors and specialists, but as I know, they didn’t find any explanation to your serious problem…
That’s right. Although all the doctors heard this unbelievably loud crunching sound from my skull – without any special tools – it is obviously objective, nobody knows what is this… I have seen countless of ENT doctors, neurologists, oral surgeons, neurosurgeons etc… I have had hundreds of tests, MRI-s, and CT-s and I had to take several steroids, and drugs over the years but nothing helped and no answers.
How did it affect your daily life?
I feel slowly I have been losing everything..my condition became so bad that I lost my job, my personal relationships, my whole life… due to the heavy pain and the noise inside, I have not been able to sleep more than 4-5 hours each night for 3 years now, I can not eat, I avoid even drinking because it naturally comes with swallowing… which in my case comes with the pain and crunching. It literally feels like there is a huge bomb exploding inside every single minute or a knife is stabbed into my brain through my ears… I have been forced to spend approximately 80% of my time in bed for 3 years now due to the heavy pain and fatigue symptoms… Also, my rare condition seriously affected the life of my family and giving an extremely difficult time for my parents, my sister, and to my closest friends. (I had to move back from Budapest to my hometown and now I am living with my parents.) They support me with everything in my fight, but just seeing them suffering gives me additional pain. As you can imagine, my physical pain comes with a lot of mental issues also, including deep depression and other mental conditions. (insomnia, exhaustion, etc)I was about to give up so many times…The worst thing is that the doctors still couldn’t diagnose my disease after three years and sometimes I feel totally hopeless and helpless.
Despite the circumstances, did you find any help?
Two years ago at least I found an extremely emphatic and amazing local doctor in Hungary who has been fighting for me since then…he is my hero. I had like 10 surgeries… spent plenty of time in hospitals since I met him. I had a catheter placed inside my inner ears, I got a different kinds of injections into the skull base while trying to manipulate some inner muscles, and so many other risky procedures… Honestly, I went through hell, but I only had some temporary small reliefs which gave me the strength to keep going, but nothing really has helped so far. We started to search for help worldwide and finally, we found a world-famous inner ear and skull base surgeon in Boston, Harvard, who is very interested in my case. He is also one of the leading researchers in this area in the world. We have been in contact with him for many months, and now there is a chance finally to get to him for a personal visit. As I have been unable to work for 3 years, I am in a very hard financial situation on top of my sickness… The first visit to Boston, Harvard will cost approx. 15.000.000 HUF(37.500EUR). We started a foundation to collect the money that I need. This specialist in Boston is my last hope without exaggeration. I want nothing more in this life, just to finally have a pain-free and silent skull as everyone else has.
NOTE:
I know Dora for over a decade. She was a young, beautiful dancer in my dance company, she traveled to Turkey with us for an international festival and to so many other local performances. We lost contact years ago, but I didn’t know the reason why she went totally silent on her social media profile. When I heard her story I immediately felt I want to help her and share her story.
If you feel like helping Dora’s recovery, you can do it on this link.
IBAN
HU57 1160 0006 0000 0000 3312 7798
Account1
1600006-00000000-33127798
Important! Please add as a note: “Donation”
– Virág Vida-
