Waiting since my first brain injury to see a doctor, ANY doctor about the injury was horrible, no one would take me on. Well then I second and third brain injury and finally was able to get into the brain injury clinic in
London.
This is special clinic and very hard to get into.
The whole experience was amazing from the moment I got there.
I park the car, a man with a little dog parks next to me, he has had a stroke and now takes his dog EVERYWHERE he goes. I get to pet and love the little thing up. I walk into the wrong doors, and look completely lost. They redirect me to where I am actually supposed to be. I am early which is fine I have my crossword book.
I get registered and take a seat with my book. A nurse comes out and asks if I would like to moved to a darker quieter room until the doctor is ready for me. WOW that is a first someone who takes into consideration what a loud bright room does to me. She takes me to a room and turns the lights down, she asks me a million questions and I start to cry to because I don't want her to think I am crazy, or making it up or all the other nasty things
Sarnia Hospital seems to think every time I go in and accuse me of just wanting pain meds, which I don't I can't even take pain meds because of the reaction to them. As I am crying and telling her something she says no no no that's normal it was actually my next question on the sheet, see look. OMG!!!! She was amazing and once the questions are finished she offers me a blanket and says if I need anything at all just peek my head out and she will come right away.
I sit for what feels like forever! It was about 30mins because the clock in there is fast lol. A student doctor comes in and asks me a million more questions, I answer as best I can and am crying again. I am not a crier but this is my last hope. No one at the Sarnia Hospital believes me,
Dr.Keith my sports doctor is doing everything humanly possible to support and help me through all this and Dr.Campbell my personal doctor has been trying every neurologist across Ontario for 2 years to find someone who will take me on. This here, this apt is my last hope to not feel like I am crazy!
The doctor comes in about 20 mins later and she is AMAZING! She gets it! All of it! I explain that I don't feel pain normal because of the high dose of pain blockers I am on. She said no, you should be feeling no pain at all with pain blockers you are, but what is it at most of the time. We go over everything. She tries to touch my head but it hurts so bad to the touch.
I see it in her eyes and hear it in voice, I am not sure what it is yet but it scares me. She says we need to get this extreme pain under control before we can do anything else. This is the first time someone has called it extreme pain! This is the first time someone gets it! I ask her a few times about the other stuff going on because of the brain injury and she just keeps saying we have to get the pain under control first. That scares me.
Turns out the SUV door slamming on my head damaged the nerve at the back of the head/top of the spine area. This nerve controls the entire left side of the brain. This is my head feels like it does! OMG answers! She says its just like with your foot. Great well I know what has happened with my left foot, I am stuck like that rest of life according to doctors.
She says she wants to put on 100MG of progablin. Its another pain blocker, they want me up to 600MG before my next apt in Sept. If they can get this pain down enough to inject the nerve with freezing. The same freezing they use at the dentist. This has a change of resetting the nerve. So if it works then I wont be in extreme pain anymore, if it doesn't work, at least I will have some relief for a few hours. If it doesn't work I will be stuck with this pain for the rest of my life.
So now I take 250MG of pain blockers in the morning and 100MG at night for a week and each week I go up 100MG at bedtime until I am at 600MG.
Do I want to be on meds the rest of my life no! But I surely want to function, I want to live as normal of a life as a person with post traumatic brain injury syndrome can life.
Anyone who knows me, knows I don't cry, at least not in front of anyone its an alone activity. Yesterday for the first time in my life I broke down in a doctors office. I broke down because the pain in unbearable day to day. I broke down because this was my last chance at help. I broke down because until now no one understood. No one got it!
Yesterday wouldn't have been possible if I didn't keep asking for help. I may be like this rest of my life, I may be in pain like this the rest of my life. But I know I am not crazy like the hospital made me feel.
When your in pain like this everyday you start to wonder if it is just in your head, yes, yes it is in my head literately a damaged nerve in my head!!!
