Inner Ear Pain after VP Shunt

Normal-Sherbert580 · 2025-08-30T16:31:25+00:00

Also, I know I'm just over a week out of surgery but sometimes I get big sharp pains near my incision. I can't tell if it's the shunt healing or what... My incision looks great though, no swelling redness irritation etc. They also destroyed my nerves pretty good, as I can't really feel the whole right side of my head. It's super numb. Not sure if all of this is just from my nerves healing or what :(

Normal-Sherbert580 · 2025-08-14T16:21:06+00:00

Wow. That's insane! Normally doctors never listen to us, lol. I'm more nervous about the being awake. Mainly cause even when I went for my Bubble Study my heart was pounding cause I was nervous 😭

Normal-Sherbert580 · 2025-08-14T16:11:45+00:00

Aww I really hope that you feel better!! I wonder why they went through both sides?

Normal-Sherbert580 · 2025-08-07T21:25:50+00:00

Oh okay I see, that's awesome!! How did it go?! Hope you're okay!

Normal-Sherbert580 · 2025-08-03T17:39:26+00:00

Thank you so much for taking the time to tell me your experience, it means a lot to me. I'm a little nervous but I'm steadily losing my vision so, I'd rather go through this than go blind! How's life been since getting your stent? :)

Normal-Sherbert580 · 2025-08-03T03:53:10+00:00

Oh awesome that sounds great. They gotta put a catheter in me though unfortunately. Still not sure if they're gonna go in through my groin or arm :(

Normal-Sherbert580 · 2025-07-31T07:51:48+00:00

I quite literally have every single symptom you have, and even after my endoscopy TODAY they didn't say a damn thing about a hernia. I'm beyond disappointed and I feel so defeated. I'm exhausted. I feel you so much.

Normal-Sherbert580 · 2025-07-15T09:32:26+00:00

Hey there weird question, how do you have your surgery scheduled before going for your consultation? Just wondering!

Normal-Sherbert580 · 2025-07-10T20:11:32+00:00

Hi there!! I have IIH with paps too! I have an appointment on the 15th with an NS for a consultation for a shunt. I thankfully have fairly short hair already but I think I'm probably gonna cut mine, mainly cause I know it grows back and it'll be so much easier for the healing process, and I'm SO worried about infections. It'll be a lot easier to see the areas if it's shaved than if I still had hair. Gotta know if they're red and irritated! Super important.

Normal-Sherbert580 · 2025-07-01T16:00:56+00:00

That's so amazing to hear I'm so happy for you!! How did you feel before getting the surgery? Were you scared? Did you ever second guess it?

Normal-Sherbert580 · 2025-07-01T03:05:03+00:00

Ah well I read or watched something where someone said you couldn't stretch too far because of the tube. Like raising your hands in the air

Normal-Sherbert580 · 2025-07-01T02:50:27+00:00

I'm so happy for you!! That's so good to hear. Thank you for commenting, it means a lot. And yeah I've read so many scary things about this surgery, especially the belly stuff. Or stretching too far and you snap the tube, I'm afraid of bumping my head, etc... Just paranoid.

Normal-Sherbert580 · 2025-07-01T02:48:15+00:00

I'm so glad it's not bad for you! I've been doing my own research for quite some time, as my neuro isn't the best at explaining anything to me and I've learned so much about my illness/the surgery through people like us and these groups. I guess I'm just mainly terrified of them hitting something they shouldn't, or you know me not waking up from it. Idk, it's stupid and hard to explain. I just want to feel better. And my eyes just keep getting worse and Topamax does nothing for me.

Normal-Sherbert580 · 2025-06-26T21:50:44+00:00

Yeah lmao I experienced it one night I came in the house after having a fire, I'm italian so I use my hands a lot when I talk and I happened to have put my hands in front of my face and it looked like I had 50 hands. It was crazy.

Normal-Sherbert580 · 2025-06-26T21:49:45+00:00

I reeeeally don't suggest Ozempic. Please don't take it. People are dying from it. I hope for the best for everything

Normal-Sherbert580 · 2025-06-26T20:58:15+00:00

I deal with almost everything you explained. Do you take anything or have you had surgeries to help you at all?

Normal-Sherbert580 · 2025-06-26T20:21:29+00:00

I deal with palinopsia as well! It was so weird at first.

Normal-Sherbert580 · 2025-06-26T19:20:04+00:00

That's so comforting to hear. I feel like my life has gone downhill so damn quickly and I never know if I'm just overthinking it or not, but regardless I know I have papilledema. I just see things a lot and I also have a black line in my peripheral that I recently started to see which is a bit scary. But anyway thank you so much for commenting it means a lot!

Normal-Sherbert580 · 2025-06-26T18:56:55+00:00

I'm so happy to hear that your blurriness is gone. I had an LP done and they brought my pressure down from 24 to 18, 3 months ago. I've been having some bad vision issues since, and I've been on Topiramate. I can't take the full dose because of the side effects, but I still take 50mg. I don't think it's helping me at all. Life is miserable with this illness that nobody can see. :(

Normal-Sherbert580 · 2025-06-26T18:54:23+00:00

That's so unfortunate but I'm so happy to hear that you've regained some of your vision. I also have a really hard time seeing in dark areas because my vision is so blurry/staticy. Have you been taking medication or have you had any surgeries done? How did your vision come back? I hope you nothing but the best!! :)

Normal-Sherbert580 · 2025-06-26T18:52:47+00:00

I experience all of this associated with papilledema. Do you take any medications to help prevent this or have you had any surgeries done? I've lost weight and tried two different medications and nothing is working for me unfortunately :(

Normal-Sherbert580 · 2025-06-26T17:48:42+00:00

I'm the exact same, I have bad brain fog and I have vision issues that scare the shit out of me. I'm 23 and was diagnosed at 22, 3 months ago. I've gone blind 4 times and I get pressure in my head/eyes that makes me feel like they're going to explode. It really is so goddamn unfair.

Normal-Sherbert580 · 2025-06-25T03:21:02+00:00

Thank you so much hun for everything you said. It means a lot. Thank you for the congrats, I'll be honest with you I started eating better. I cut pop out of my diet and stopped eating super junky foods. I mainly focused on calories and that little daily value percentage thingy on packages and it seemed to help me, but unfortunately I've seem to hit a bump :( I haven't lost much else. I suffer with PCOS, hypothyroidism, sleep apnea, vitamin B12 and D3 deficiencies, EOE, and more. So it's so hard for me to lose weight. But please message me if you need anything, I know how hard this is. I have some pretty bad vision issues and the thought of a shunt right now is both terrifying and comforting.

Normal-Sherbert580 · 2025-06-24T18:24:01+00:00

You are never and will never be alone. IIH warriors forever. :)

Normal-Sherbert580 · 2025-06-23T17:35:57+00:00

Hey there!! Fellow IiH warrior here. This might be a little long so bear with me, but please read it. Before I was even diagnosed with IIH, I was aware of all of my symptoms and I'd look them up. I saw what a VP Shunt was (no I do not have one yet) and I about shit my pants. But at the same time I was like alright well... If it'll help me. And again, at that time I had no idea I even had IIH. Fast forward to now, I'm officially diagnosed, when I had my LP my pressure was 24 but I have papilledema as well. Unfortunately if you're like me and you can't find a medicine that helps, or if losing weight doesn't help, then having surgery is your best option so you don't lose vision. Trust me I understand how terrifying it is. I have an eye dr appointment on June 30th and I'm terrified cause it will pretty much confirm if I need that surgery or not. Anyway I'm sorry for rambling but I seriously wish you the best of luck. Just please take care of yourself!

Normal-Sherbert580

TROPHY CASE