My daughter will have to have surgery

Melissa, thanks for the letter,, I have all the empathy in the world for you , I watch this diesese change my girl from an outspoken outgoing young lady to someone that cant seem to pull words out of her head to make a sentence that is clear, her head hurts all the time,, We have tryed the Diamox for several months and she has lost 8 lbs but the pressure continues to increase. and now loosing more vision. My poor girl just cant seem to get a break,, we have had 4 spinal taps in the last 8 months she has not been at her job long enough to get any medical time off, she will loose her job but hopefully we can keep the insurance long enough to get the surgery done.  so have you been able to stabalize your pressures?

I have been very lucky in that the Diamox has worked very well for me, my visual fields went from having an enlarged blind spot to being normal and my vision is now better than 20/20, so I just pop one every other day and I'm fine. I actually feel lucky in that a week later my optometrist came across another girl my age with the same headaches and optic nerve swelling and she turned out to actually have a brain tumor. I can't imagine having so many spinal taps, one was enough for me to say never again after having been stuck over 30 times before they found the right place. The headaches that I had before getting on Diamox were beyond debilitating-and then when I was first put on Diamox I was unable to think straight for awhile. It is so hard to step back and allow yourself to just heal, and be taken care of but it's really something she needs to do for her own good. One thing I was never told at the beginning was that birth control pills should be avoided with this condition, but I'm sure her doctor has gone over all of the different things to avoid. My doctor actually just took me off diamox for a few weeks to see if it is causing my elevated creatinine level that is so far unexplained after a kidney ultrasound, and other tests. The ihrfoundation.org is a good resource about IIH.  Are you working with the Casey Eye Institute in Portland?

We are working with an eye dr here in gresham, she did give up on the job just couldent perform right now.  looks like you are ready to have surgery soon?

Kelley - just wondering how your doing and how your daughter is doing.  I've thought so much of you and your daughter - and just have her on my mind today.  Gayla

Thanks so much Gayla, Well she gave up on the job she had a really bad night sunday and could not go to work on monday it was her last write up. She just needs to focus on getting her self better. we saw the surgon and he wants more tests before he move forward, in the mean time her headaches are overwelming, one day at a time thats what we are doing I appreciate you concern and thoughts. Tomarrow is her birthday she will be 28 :) she is not feeling like celebrating.

As a person with Chronic pain, and an advocate for others in pain, I can certainly empathize with what she is going through.  I guess that is why she has been on my mind so much.  Kelly, I'm so sorry she is going through this.  It's not easy for her, but it is also not easy for you - I am sure.  I have watched my daughters and my husband set back feeling very frustrated that they couldn't do anything to help me during my flare-ups. Sometimes, the things that helped me most was just to feel my daughters soft hands on my face or arm....or my husbands warm hands rubbing a part of me that didn't hurt!  Just knowing that they were there for me was what I needed most.  There isn't much else that they can do.  At the same time, take care of YOU, Kelly - because if you don't take care of you first, you won't be able to take care of her either. Your in my prayers - Gayla