Friday, May 10, 2013

My IIH story

When I was 25 I started getting terrible headaches. Terrible. This is not a migraine, it is worse. I have gone completely blind once already and did regain most of my vision. I have had over 15 spinal taps in the last 18 years. I have been bankrupted once by medical bills. I suffer EVERY SINGLE DAY from chronic pain, headaches and now, I am going blind (Again). I have to have surgery very soon. Very soon! or risk going completely blind.

The good news is, I meet 2/3 requirements for a clinical trial going on in New York. It is brain stenting. I have one more test to do to confirm my candidacy. The neurosurgeon has to identify if I have stenosis of the venous vein in the brain. I do have this, because I have read it in my previous MRI/MRV. So I am 99% sure I will be selected.

All I have to do is go to New York once selected to get this done. I am currently fundraising or trying to on etsy and selling off everything I own. Some family and friends have asked how they can help.
I hate to put it so bluntly, but we need money to make this trip at the BARE minimum. I can't miss out on this and need to be ready to go at a moments notice when I am selected. My husband needs to go with me, because I just can't imagine trying to get home by myself after brain surgery or even being up there alone.

I am going to set up a donate button. Yes I feel weird about even asking. But if you can and if you feel inclined, I would appreciate it so incredibly a lot.

There is a very good chance I could go into complete remission if I can get there and have this done. A VERY good chance.

Worst case scenario, if I can't go, I will need either a brain shunt (50% effective, many revision surgeries needed mostly likely, infection, risk of meningitis, etc) or a lumbar shunt (pretty much the same as the other, but this would be my second choice) So I will still need help if that happens.One way or another I am having surgery. There is another surgery called Optic Nerve Fenestration. That is also an option, but it does nothing for the headaches and is a stop gap at best.

Imagine a pain you have been in and imagine that pain NEVER stopping. EVER. Then imagine there is a possibility you could be 100% cured.

If you want to and can, please donate (button in the upper right hand corner of this blog). If you don't want to donate, make me an offer on some art or jewelry on etsy. And if you can't do that, please pray for me.

I will be posting my progress here and on Facebook. If you have any questions, ask me! If you want to know more, see medical records, anything, I am an open book.

Much Love

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