Really Disappointed After Today's NO Appt

Hi All,

I had my first follow-up with my neuro-opthamologist since I first saw him, immediately following my 5-night hospitalization where I was diagnosed. I'm so disappointed bc I've done everything the doctors asked (lost over 10% of my body weight in 3.5 months, been on 2500mg of diamox for 3+ months) and was hoping he'd see improvement, or at least consistent results since that first visit.

But turns out my optic nerve swelling is worse, especially in left eye which is the one I have dim-outs and intermittent loss of vision completely a few times a day, I've lost some peripheral vision already and I'm at risk of urgent permanent damage, if not already.

Anyway, he wants to see me back in 2 weeks, then again a month from today. Going up to 3000 mg of diamox today and up to 4000mg in a week if I can tolerate it. So if in 4 weeks, my swelling isn't improved, I have a neurosurgery consult that week with the goal of urgent surgery.

He offered to repeat the MRI, MRV and lumbar puncture to ensure it's still IIH and nothing new has come up. I asked if that's necessary and he said no, but if it will put my mind at ease, he's happy to. I said hell no - I don't wish to be buried in the metal tomb of death aka MRI again. Plus if I have surgery, they'll do another MRV anyway to see which surgery is best.

I don't have stenosis, so I don't think I'm a candidate for a stent (is this correct? I think that's what he said...) and he said a shunt is the last resort bc it's permanent and a lot of patients have ongoing issues + he said it's "true brain surgery" (which 1) what does "true brain surgery" mean, aren't both a stent and a shunt neurosurgery?? And do I have to shave my head for a shunt?)

He also said the shunt doesn't always work and I'll have it for life. But if the diamox/weight loss doesn't work (it hasn't so far which he said is discouraging) then the shunt is the only other option. But that it is not a great option if it can be avoided and success rates aren't fantastic.

So then if the shunt doesn't work, nor diamox and weight loss, what does that leave?! Does that just mean you go blind? He said these are the only options...but then listed reasons none are great options.

I'm trying to focus on the positive that I have a fantastic doctor who listens to me, is respectful and spends time explaining things. He's also really funny and we spent 20 minutes at the end talking about our similar, shared experiences as people of color in jobs where we're the only ones and we laughed and stuff, which honestly lifted my spirits immensely.

Now I'm rambling. But I stood outside the hospital and cried for a few minutes before calling my uber home. I don't know why...it could be worse. But it just shocked me that the weight loss and diamox hasn't worked, and in fact, the optic nerve swelling is worse. Am I overreacting?

Thanks for getting through my long, rambling message y'all. Appreciate any and all feedback, thoughts or experiences you wish to share! Also, if anyone is in the Seattle/Washington State area and needs an amazing neuro-opthamologist, I have a great one!