Hey! I have some news for you and they’re kinda news for me as well. I have gotten a diagnosis
Idiopathic Intracranial Hypertension
It’s completely unrelated to my arm and the struggles I’ve had surrounding this – the reason I left my gorgeous princess in UK and went to Norway is still unknown.
What is Idiopathic intracranial hypertension (IIH)
It basically means that the fluid surrounding your spinal cord and head builds up and creates to much pressure in your head.
Reasons, symptoms and treatments varies hugely from person to person. It’s as rare as 0.9 per 100.000 people who gets “IIH”. But it is mostly seen in fertile women who is overweight.
How Did We Notice This?
I went to my yearly check up to the optician – I was gonna swap one of my glasses out. She measures the pressure in my eyes and takes pictures – then we do the normal eye test. In the end she says she sees swelling on my eyes called pappiledema and wants to send me for further tests at the eye doctor. I go there straight away for more tests and she then sends me further to the neurological department at the big hospital nearby. There I stay for 6 days.
I by this time did not know at all what was wrong and was very scared! I didn’t understand how a normal check-up at optician could end up here at the neurological department. I kept thinking what on earth is wrong with me.
I eventually got a room(first 4 hours of the first night I lived in the aisle) and got a shower. Much appreciated! I have to say my family here was very supportive and caring – I was almost never alone ❤️
I came in on a Friday and got told if they didn’t get to do the tests during the weekend then Monday was the day. Monday came and I then got told that patience is a vertue and that I should just wait cus I wasn’t prioritised. I asked for permission to go and take my MRI’s and x-ray for Wednesday and got NO as an answer. This really took me by surprise and I wanted to leave. I tried to ask what was wrong but still no answer. Dad comes and we decide to have a word and explain the situation further and was then given the ok to go.
I was waiting for a head and spinal cord MRI at Kalnes (the hospital I was admitted to) and a lumbar puncture. I got the MRI on Tuesday and they tried and failed to do the lumbar puncture on Wednesday. All they managed to do was to create a lot of pain.
My back was not happy!
On Thursday they were gonna try again – this time with an ultrasound machine. They struggled for 30 minutes I think and couldn’t find where to stick the needle, eventually I get asked to sit up, he finally finds the right place, gets the needle in, fairly smoothly without to much pain. Then to my and the assistent nurse BIG SURPRISE I get asked to lay back down, with the needle stuck in my back. This somewhat freaked me out!! I then layed there as they measured the pressure and drained out some of the cerebrospinal fluid to help lower the pressure in my head, before he removes the needle, puts a plaster on and tells me to drink cola or coffee and rest for a while. Later that day I get sent home. With the diagnosis
Idiopathic Intracranial Hypertension
I have googled and googled but it’s not so nice. It can lead to nastyness I’d rather not have or think about. I’m now on medication, this is day 3, unfortunately it brings a lot of side effects which of course I am experiencing – I mean I’m not really on a lucky roll here so I wasn’t expecting it to suddenly turn now….. But I am home & I am feeling ok! 8 pills a day when I’m on full medication, ugh!
All we can do now is to keep our fingers crossed that my body responds to the medication and weight loss and that the illness doesn’t progress further!
I got the most gorgeous picture sent to me of princess today ;
Gosh I miss her ❤️ I miss her so much!
It’s not been a very nice week, it’s been a lot of thoughts, questions and fears. And there isn’t really a lot of answers yet unfortunately. But I’m hoping that the pictures I’ve done privately with my doctor will show something regards the arm so I gets some answers there. Nest meeting regarding the IIH is 8th of April.
What brings peace to my mind is that I know Danza is getting the best care and that the support system I have in the UK too is absolutely amazing, I am truly blessed and so greatful!
I want to thank all of my followers too who is taking part of this journey with me and apologies it’s a complete disaster at the moment! But hopefully you can follow me on the journey back to what I love the most. Being around my beautiful horses!
Thank you ❤️
Love Ancha XO
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