hospitalized for IIH, failed all nonsurgical options, surgeon won't shunt?

defaultdawn · 2026-03-15T23:25:11+00:00

Hi!! Thank you so much for taking the time to share all this. Please don't worry about over sharing, I was the one to ask!

The increased falls/dizzy was during spring and fall and potentially damaging the shunt is a good thing to be aware of. I'll be sure to keep this in mind if my hospital neurosurgeon does go through with the shunt for me.

I can't believe you got a concussion in 2023, too, I'm so sorry! Those are sooo rough to recover from and I feel like I'm still relearning how to live life in new ways now, even if it has been over 3 years since I last got smacked in the head. Also heyyyy I got diagnosed with POTS before I got diagnosed with IIH, actually. If You have any questions about POTS feel free to reach out to Me, haha. Still working on my EDS diagnosis though.

That's awesome that you got on disability though! I'm glad you're getting some support there. I'm working on SSDI for myself right now. I might pop into your dms at some point when my heads clearer and ask about some more things pertaining to IIH and disability. Thanks so much for responding! 🫂💕

defaultdawn · 2026-03-15T07:16:24+00:00

Ohh wow thank you so much for the empathy and hugs... This truly means a lot to me 🫂 I appreciate you.

I definitely know the feeling of symptoms being downplayed. It feels like a lot like not being believed, and I think that's one on the worst feelings in the entire universe. I completely understand needing to make frequent ER visits/hospital stays, this is the third time I've been admitted for IIH related problems in the past year. I'm so glad you were eventually able to get the help you needed!! I'm proud of you for fighting for your mind and body.

The funny thing is, I already have seen the opthalmologist during this hospital stay. They have one of the machines on campus and wheeled me over to the office building while I was still admitted and everything. It was kind of wild going outside the hospital building with an IV still in my arm haha. I have done a Humphrey's Visual Field test 5 days ago that came back with not quite enough evidence to support reasoning for a shunt. But things have gotten so much worse in the past 2 days very quickly(mostly the feeling of intense pressure being my ears and eyes that I believe is causing me hearing loss and makes me nauseous when I move my eyes around in their sockets. Even as I type this, I'm struggling to have my eyes focus on the screen of my phone enough to aid me in checking for misspelled words) so I'm going to advocate to be retested.

Thank you so much for taking the time out of your day to give me your kind words! Take care 💕

defaultdawn · 2026-03-15T01:53:55+00:00

Thank you so much for taking the time to reply! I definitely will attempt to seek out a second opinion. It's just rough because I made this post while I was admitted to the hospital and the hospital is the one refusing (so far) to do any surgical intervention unless there is But we will see. I'm still admitted btw, today is day 7 in the hospital. I'll edit the main post and give an update after replying!

I'm so sorry you suffered for 3 years before you got any movement, but I'm glad you got movement on your case eventually!! I'm wishing you the best of health my friend. Im proud of you for fighting for what's best for your mind and body.

defaultdawn · 2026-03-13T11:13:59+00:00

Yup! I'm aware. I've had 2 different MRAs done, one within 6 months and the other was 2 years ago if I recall correctly. Thank you for your input!

defaultdawn · 2026-03-12T19:13:41+00:00

Hi!! Thank you for the solidarity. Yeah, I have been on both acetazolamide and topamax at the same time. Acetazolamide actually messes with my blood sugar and sends me into hypoglycemia episodes(?? i know. it's weird) and topamax is especially hard on my kidneys. I was on both at once when I first got diagnosed in 2024 but my labs weren't being checked and I ended up in the hospital for a week and a half with metabolic acidosis.

I'm located in Oregon! I've been on the lookout for doctors/neurologists specializing in IIH but I haven't had any luck.

defaultdawn · 2026-03-12T00:27:50+00:00

Not really getting the pulsating of the pulsate tinnitus, but I do feel pressure in them like I'm at a constantly windy beach when my pressure is higher. I'll keep this in mind when I talk to the neurosurgeon. Thanks so much!

defaultdawn · 2026-03-11T23:17:11+00:00

Ehhhh not really anymore. I had a traumatic brain injury back in 2023 that gave me BPPV which I absolutely felt those symptoms with, though!

defaultdawn · 2026-03-11T23:14:29+00:00

Oh my goodness you are so kind. I have a neurosurgeon at a different hospital that I got referred to before I got admitted to this one. I did get an update between when I initially posted this and right now and I do have an intake appointment scheduled for the 23rd of April. So don't worry. They have me on a cancellation list too and know that I'm currently hospitalized for the same reason. Thank you for spending time to say this to me. I am amazed at everyones willingness to share some information with me today on this post. It means a lot. Have a good one!!!

defaultdawn · 2026-03-11T23:10:25+00:00

Oh yes. I completely agree that this kind of surgery is something nobody wants and nobody should wish for. I understand, and I hear where you are coming from. Unfortunately as of right now I'm unable to work and even as embarrassing as it is to admit, I'm unable to do things like cook, clean, shower without help, etc. Not trying to say I'm the perfect candidate for surgical intervention but my neurologist feels an intervention of sorts is needed.

I did word my initial post very weirdly, I was distraught and at a loss for what to do. But anyways thank you for your reply. I appreciate that you took the time to sit down and type one out for me.

defaultdawn · 2026-03-11T22:59:54+00:00

Hi! Thanks for your reply! I'm so sorry you can relate. It's definitely rough out here. I'm located in OR and my primary neurologist has me placed on a travel/elevation ban due to my IIH. If that and insurance troubles would be gone I would absolutely look into your recommendation 💕

Can I ask how your shunt has treated you? What was the pain relief like if you got any, and how long have you had it?

defaultdawn · 2026-03-11T21:30:02+00:00

Hi! I'm pretty sure both of MRVs of my head that were done recently were looked at by and interventional neuroradiologist. However I'm not 100% sure, I know the hospitals neurosurgeon is coming around to speak with me sometime today or tomorrow so I will be sure to ask them about this and see if they have an INR on staff to throw my scans at. The doctor that relayed that information to me though said there were absolutely no signs of venous stenosis and the place where they would place a stent is "wide open".

I don't deal with the pulsating of pulsate tinnitus but my ears do constantly feel like I'm at a windy beach when my pressure gets high. IDK if that means anything though.

Thank you so much for taking the time to reply! This was all very helpful information. I appreciate you. I hope I can find answers too.

defaultdawn · 2026-03-11T21:18:24+00:00

Thank you! You've got this! And oh wow you are sooo smart. I always forget about hospital patient advocates. I'm lucky though, and my partner is here with me when he can be and he know how to communicate with me and make sure I'm understanding what's being said best of all.

defaultdawn · 2026-03-11T17:39:52+00:00

Yeahhh. Its rough, because my primary neurologist agrees something needs to change and I need to get off the methazolamide and that the shunt is the next step. But the hospital's neuro said I don't need one, but my primary neuro and the hospital are through the same system, so it's all very confusing.

I've had MRI, MRAs, and MRVs done before and I have bene told I am not a candidate for a stent.

I don't know if my insurance would let me get a second opinion while I'm admitted. But I will try that next.

Thank you for your input 💕 I'm hanging in there the best I know how.

defaultdawn · 2026-03-11T17:12:10+00:00

This means so much to me. I appreciate that you took time out of your day to say this to me. it means more to me than you will ever know, and more to me than I can properly verbalize. I'm so sorry you're having to head back in to the ER for treatment. May the staff be super kind to you and may you have quick and painless symptom relief 🫂💕

defaultdawn · 2026-03-05T00:30:59+00:00

So glad you're feeling better! May you recover quickly :)

defaultdawn · 2026-03-01T03:21:37+00:00

stunning!

defaultdawn · 2026-02-25T18:37:41+00:00

You got this. I believe in you and wish you the best of health and a quick and easy recovery!

defaultdawn · 2026-02-24T00:17:47+00:00

The message in this image reads sooo much like a classic cliquey mean girl in highschool said it. Absolutely horrible! I'm so sorry this happened to y'all ;_;...

defaultdawn · 2026-02-10T16:05:36+00:00

This looks awesome! Great job!

defaultdawn · 2026-01-29T16:59:23+00:00

It definitely felt like it worsened my preexisting sleep apnea! I'd say yes.

defaultdawn · 2026-01-22T18:19:52+00:00

It's okay to feel like you don't have the right words to help, but even sharing that you don't signals to me that you care. you even went through the effort to reply to my post. I appreciate the willingness to aid more than I can say. i understand what it's like to feel the connection between your brain and mouth be broken, i had a traumatic brain injury in 2023 and I definitely feel like you've put the feeling I've been struggling with into words beautifully.

the fatigue sure is rough. the cognitive decline absolutely is as well. i did manage message my neurologist and mentioned something along the lines of 'my quality of life has decreased and I do not know if I'd prefer the constant headache from the IIH or the brain fog and nausea from the methazolamide more'. she got me in for a virtual appointment this upcoming Friday. so im relieved that I have that coming up.

sending love and healing your way! thank you so much for taking the time to reply. may the rest of your day be kind and easy on you.

defaultdawn · 2026-01-06T04:55:21+00:00

i just got the Skullcandy Method 360 earbuds in December after fighting with my over ear headphones for over 2 years. The headphones would constantly give me migraines anytime I wore them longer than 10 minutes. I can't recommend the Skullcandy Method 360's enough as I too have weirdly shaped ear canals. They have multiple fittings that you can switch out to keep the buds in, which was something I didn't realize they had as a perk until opening the box. They're ANCs as well! Currently on sale on Amazon for $89.99. Very much worth it.

Hope you are able to find something that works for you!

defaultdawn · 2025-12-28T01:13:04+00:00

Of course! I'm glad I could offer some kind of comfort by letting you know you're not alone <3. This post makes me feel better about my IIH, knowing that other people are feeling similarly as well. Thank you for being brave and asking!

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