I was diagnosed with IIH 25 years ago and had the surgry, optic nerve sheath decompression, 24 years ago. I have maintained pretty well over the years - but do have the occassional problem with it and periodically have to go back on the diamox. My daughter is 20 and was just diagnosed with the IIH a week ago. Her pressure is extremely high and ishe has started on the medication - but hers is so bad right now that they are only going to wait a couple weeks and if no improvement (they'll be monitoring her closeley) within 2 weeks - she will also have the surgery. I have a chiari malformation in addition to IIH. My daughter does not have a chiari malformation - but her situation is somewhat complicated by the fact that she has optic nerve drusen. I am excited finally after all these years to find a group of fellow IIH patients and friends to interact with. Thanks

Hi Chris and a very big to the group. I'm so glad that been able to be quite stable over the years, especially after surgery. Having chiari Malformation can't have helped it much either, and yet you seem very positive and have managed to get on with your life. It must have been quite a shock to find out your daughter has got it as well, but I'm sure you will be a comfort to her, as she will have seen how you have managed your own IIH, and life with it, so she will have you as a fine example to relate to.

I know what you mean about finally finding others to talk to, I've had IIH for 22 years and at times felt very isolated, thank goodness for the internet! I'm pretty sure that you will have some worthwhile advice for other sufferers, with what you have learned over your 25 years with this. I'm so glad you joined us.