February 11th Agnes
Meanwhile, it is February and the intake is finally there. I ask fellow sufferers how such an intake goes, How can I prepare myself for this? The general thrust is: Don’t worry, it will be ok.
But that’s easier said than done if you feel That this conversation may be the gateway to a life enhancing Treatment. I grab a paper and divide it over several areas: my questions, My symptoms, my medications. I carefully translate everything into English. Despite that I find that my English is ok enough, the medical terms can be quite hard when I’m under pressure.
Already far before the agreed time I opened up my laptop. Because besides that I have quite a few startup problems in the morning, my laptop can also do some of it nowadays. Luckily my laptop has a good day and before I know it I’m sitting half an hour early ready for the conversation. Check the camera, is the quality of the video good enough like this? No shitty, it’s too dark. I turn on the lamp above the table so that I’m visible for the person on the other side of the world. Unfortunately, that lamp immediately gives an annoying feeling in my head, it’s too bright today. But I know: Continue now. I also know that adrenaline will always help you throughout your worst moments. Then you fall into 1000 pieces but at a time supreme you can perform quite a while, despite a too bright lamp and associated yukky feeling.
It is now 5.25 p.m. I ask Sjoerd, my husband, if he wants to join me. Just to help me if necessary and to ask the questions he still has to ask. There we are, both tense because we know what Depends on this. The phone rings a 5.30 p.m. exactly through Skype. I take the call right away.
The specialist asks for my story, I tell. She indicates that she actually thinks there is a slight form of brain damage caused by the shock and the anesthesia on top of it. Because of the shock, veins stick together to continue to provide blood for the vital organs. She is the first physician to indicate that especially in a woman the vital organs in her abdomen are important and therefore that certain parts of the brain are subordinate to it. WOW, immediately so much recognition. This is exactly what I have been trying to explain to my doctors in the Netherlands for years.
She also thinks that they can treat my complaints and have good hope that I respond the same to the treatment as all of their other patients. WOW! However, she honestly indicates that all their success figures are based on people with Post Concussion Syndrome, so they cannot give any guarantees. But of course I knew that beforehand.
I asked her too if she thinks if they can do something for the pulsatile tinnitus that I hear everyday and feel in my head (MdDS). She said it sounds like that on that side of my brain (left) there’s too much blood flow and that this can explain the symptoms. After the treatment, these symptoms may also decrease because the blood flow is optimized again in the rest of the brain. The blood gets the right direction again. This is also really fantastic news because I never expected that these complaints could be treated too.
Some more questions
After that we discuss some questions and she continues to confirm me and my intuition again and again. It is so nice to speak to someone who has so much experience in this field and who recognizes the complaints and the debilitating consequences of this.
We also talked about my medication. She tells me that They prefer to treat an brain as clean as possible. So also at least two Weeks in advance no coffee, alcohol, drugs or medicine. So We are agreed That the treatment date is planned later in the year so that I am can safely taper off from the medication.
The business side
After the conversation with the doctor I have another conversation with the secretary for the more business side of the story. This conversation is very easy, because I had prepared myself well. I tell her that my sister may also be eligible for treatment. The secretary is so sweet to indicate that when Paula fills out her forms immediately, she can book her online intake somewhere soon so that we both have quick clarity about the treatment.
February 18th Paula
Within a day of completing the forms, I am told that my intake can take place 5 days later. This is quite special because normally the waiting time is a week or 8. But they have kept up with what they said to Agnes last week, Super nice.
Because Agnes had already had the intake and has been approved for treatment I find it doubly exciting. What if I am not approved? What can’t get out of my words during the conversation? It feels like my only and last hope for more quality of life.
Today is the day of the intake, which is planned at 22.00 Dutch time, normally I’m already to sleep. All day I’m Nervous and I’m postponing to set up my list of questions and write down some catchwords that I need to remember. Eventually I have to speak to myself: come on, write it down! I’ll share my list with Agnes to know for sure That I have not forgotten anything.
I go to bed, as always, at 18.30. I try to find some distractions and try to sleep a little. But everything rants through my head, all emotions come over. I really want this! After all the doctors I have seen and spoken, who could do nothing for me and then just shift it to psychological problems. Or as in Antwerp there is a pill.
I went out of bed at 21.45 and started the laptop, well on time I was ready. Just before 22.00 a little panic: the ZOOM invitation suddenly said 19th of February. Shoot, did I made a mistake? Have I stayed awake for so long for nothing? and have I had all those nerves for nothing?
But at exactly 22.00 there was a connection with America. A very friendly specialist asked about my story and my complaints. They have never dealt with anyone who has sustained this (exact similar complaints with post concussion syndrome) through another cause. But because the complaints are so similar it has they have the confidence that they can do a lot for me!
Hope shoots through my whole body.
It was so nice to talk to a specialist and she even recognized all the complaints. I did so much to fighting against doctors, so many times trying to explain how and what I feel. It was never understood, and here at Provo they know that how real these complaints are.
After talking to the specialist I was connected to Secretary for the practical side of things. Also with her I have the feeling to get into a warm bath (a Dutch saying, you get the point right?) These people really know what they are talking about and are going to help me!
We are going to America! We have now agreed on November 4th as the date of the start of the treatment. This gives Agnes the space to taper down the medication, as you can read here . In addition, Paula her son goes to school for the first time in September and then it’s nice that Mama is at home. Also, this somewhat longer waiting time gives us the time to set up this website and to recruit donors who can help us to pay for this expensive treatment.
Being ill taught us to be patience, so we are really rocking that competence but now to be honest WE CAN NOT WAIT!