hi everyone i'm rhiannon. I was diagnosed in july last year after nearly 2yrs of headaches and stiff neck. my first LP had an OP of 65 and closing of 8. the lowest OP i've had is 26 and that was monday before easter this year but the radiologist stuffed up and didnt drain enough CSF off so i had to have another LP the next day which resulted in a dural tear and a CSF leak....9 days later after excruciating low pressure headaches, brain irritation that caused vomiting and me crawling to the shower and then collapsing in pain i had an Epidural Blood Patch ... definitely an easter i won't forget in a hurry.

i'm currently on Acetazolimide 3 times a day at 500mg per dose and they have only just sent out referral letters to neurosurgeons and bariatric surgeons so between i guess now and the end of the year i will be having one or both of these surgeries. i don't know how i feel but i can't really show any outward sign of being scared when i'm around my mum and sister.

well thats me if you'd like to know anything feel free and ask

Hi Rhiannon, welcome to the group! Sorry you had such a horrific Easter, but it sounds like they figured it out & took care of it pretty quickly. Recovery from those things can be absolutely dreadful, so I'm glad you're on the other side of it now & they have plans to move forward with treatment.

I think you'll find a lot of good information on this site, so check it out & let us know if you have any questions..we'll help you the best we can. I would really encourage you to explore the risks & benefits of bariatric surgery. I know a lot of professionals like to blame weight, but since only approximately 14% of IIH sufferers are overweight women of childbearring years there have to be other factors involved for weight loss to be affective..it works for some but not others, so make sure you're completely informed before agreeing to such drastic measures.

Good luck, & please keep us posted on your progress!
Julie

Hello Rhiannon and

I do hope that the BP worked; CSF leakers seem to have it so much worse than us "normal" IIH'ers do. Having to deal with constant low pressure symptoms is really tough.

I had my lp shunt installed last November and have been getting better and better. I do hope that you will be able to get some type of IIH surgery done soon. There is indeed life after IIH!

Hi Rhiannon! Sorry I'm so late welcoming you to our group -- but I'm so glad you're here and I look forward to getting to know you better. *hugs* Sounds like you've been through so much already. Let us know how you are doing.