Sunday, February 28, 2010

Good Morning All

Its 8pm Bangkok time and I am finally out of bed for the day.So Good Morning.

This post was supposed to be the "Hi All, I am well again" post. Seems my head has other ideas.

Back in May last year I posted about the "Headache from Hell" and after a spinal tap it seemed to go away for a bit.
December came and my arteries had their turn and we all worked together one that one. Thank you.
So as I spent the time recovering I found that the head had decided to speak again. Frustration is reigning supreme here. My chest feels great, my hand is healed and now my head hurts. What the...?

So I rested, and rested and then rested some more.I spent almost all day every day in bed and the days I wasnt in bed and was working on my computer, I lay on my back on the floor with my notebook propped up on my belly so I could work.Not very elegant and not very comfortable but still let me talk a little and communicate with the outside world.

On 8th Feb I had had enough and went to have a spinal tap. Big ouch and horrible. The neurologist missed Twice and then the Dr who came and did the tap didnt take the pressure down. Why? Apparently she wasnt asked to and even though it was 19 points higher than normal she didnt stop and contact the referring Dr or even make a decision about treatment by herself but closed up and I had to wait until morning to do anything further. So next day she does the tap again and this time actually does what is needed. 4 needles into my spine in 12 hours.So not fun. And lying on your back for 24 hours is not the most comfortable spot either.
I went home on the Tuesday to rest some more. Sleep was great for a week. But crawling to the bathroom and around the little room I live in was not.
I even went to the River Kwai to rest for two days to get away from the computer and the city so I didnt work on anything at all.

My head hasnt improved at all this time.In fact if anything the headache is worse after this tap. So I went to find a new Dr, a new hospital and a very different possible diagnosis.
See in the past I had been being treated for Idiopathic Intracranial Hypertension. This is where the fluid still moves up and down the spine easily but doesnt drain.Pressure building up and squeezing your brain. Click here for link . Like that isn't bad enough? Now there is a question mark over that. Is this ACM1 ? Acquired Chiari Malformation type 1. Check it out at this page

Probably acquired due to a blow to the head and this has aggravated the underlying non-symptomatic skull deformation I was probably born with.

The photo I have put up is an example of the type of finding on MRI. The brain stem slips into the spinal space.

So now that I have bombarded you with all this info, what does it all mean?
Well it means that the headache from hell is going to get worse.It also means that unless I get the pressure reduced permanently and soon I am going to go blind. My eye sight in my right eye has already deteriorated to the point where I have no peripheral vision at all (last May I was blind in that eye for a few days as well) and my left eye has limited peripheral vision. I cant focus unless I wear glasses and that really bites when I am trying to create, and all this has happened since last May.Yes really fast. The neuro specialist and the neuro eye specialist both seem to think that if I get my head sorted very soon the damage may be reversed.I am praying so. At the very least I should be able to keep the vision I have.

I see the neurosurgeon on Wednesday. I'll have a better idea of treatment options when I know exactly which of the two evils it is and can then let you all know what I am doing. The main thing is I am going to have to have surgery of some major sort again. And that is so not fun.

So my friends there you have it.Why I had a small and very short comeback and a longer quiet time again.Why I possibly will be offline again soon. I so wanted to get my shop sorted and get all my new goodies listed and catch up with everything and everyone. Seems that is going to have to wait. I wonder if my getting the genes from the bottom of the barrel means that someone else gets a chance to stay healthy? I hope so.I will make it easier to deal with that way

Ok so back to bed. Maybe if I lie down long enough the vice will stop squeezing my head.

Light and Love to you all



  1. OMG Tanya, I hope it gets better soon! My daughter in law has IIH where the fluid doesn't drain. She has bad headachs alot too. Here is hoping that they solve this for you real soon.

  2. how horrible! sending healing thoughts your way.

  3. Oh Tanya, I am so very sorry to hear this news. Many good thoughts, prayers, and positive, healing energy goes out to you.... and lots of love! ~Nikki