Sorry for what you are going through. Yes I stayed on the Diamox for almost 6 years. I had horrible side effects but it did it’s job. Shunts have a high rates of malfunctioning and can get infected. Many patients have to get multiple revisions if it kinks or have it taken out if it gets infected. I’ve also talk to patients who start swelling from the fluid it shunts off. Many people are happy after they get their shunts put it. Its all about risk and benefit and they both have them that you need to weigh what is more important to you? Some people do go into remission where they don’t need the medication anymore, it took me about 6 years. Good luck!

Thank you, this gives me a lot to think about. I appreciate it!

hi Kayla;
do you have papilledema? what are your worst symptoms? I think it depends on that, what you decide to do. you can have ONSF if it's mainly papilledema, and avoid a shunt. I agree, shunts can cause problems of their own. there are many people who do very well with them. I found that even my very slight amount of sleep apnea was causing a big problem for me. I had to really work to even get diagnosed. most people don't think they have it and I didn't, but I did have it. treating my sleep apnea made a HUGE difference to keep my ICP down, to reduce the brain fog and headaches. I chose to have jaw surgery because I was not tolerating any of the other treatments. but some people do fine with BiPAP. my son, for example, who also has IIH and OSA. I decided that I would rather have jaw surgery than have a foreign body in my brain. it worked, and I'm in remission.

so unless you are in a time crunch due to threat of vision loss, take some time to get a good sleep study and figure out if OSA is contributing to your situation. my first sleep study didn't show it, but I used a tongue retaining device and the fog cleared for the first time in over a year so I knew I was on to something. I had to go to Stanford to get diagnosed.

You do have to weigh out pros and cons. My op was 38 after multiple LPs and I also had to have a blood patch too! Nice to hear someone else knows what I went through, sorry you’re having to go through it as well. My deciding factors were I was feeling all the Diamox side effects and had multiple miscarriages but the number one reason I went with shunt is because every night when I went to sleep I was in fear of not waking up because I felt like my brain was in too much pain. Once I met my neuro surgeon and he explained everything to me and made me feel so safe and comfortable with the shunt surgery which is a permanent fix, I didn’t think twice about it. I was on Diamox for year and half and according to my neurologist I was in remission the whole time unfortunately that was not the case. Asking for a second opinion or third is not bad it’s smart.

I was diagnosed through a routine eye exam in November 2017 and then put on Diamox. My visual field exams were bad, and after 45 days of Diamox and worsening eyesight. Pressure of 55. I had a VP shunt on 1/9/18. Unfortunately, even though the shunt is working, my optic nerve swelling isn't reducing at all, so I am still on the Diamox a year later. So a shunt doesn't necessarily stop you from needing to take the Diamox.

have you considered ONSF?