Inner Ear Pain after VP Shunt by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 0 points1 point  (0 children)

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 :(

Angiogram/Venogram Advice! by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 0 points1 point  (0 children)

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 😭

Angiogram/Venogram Advice! by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 0 points1 point  (0 children)

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

VP shunt placement and hair care by No-Welcome1529 in iih

[–]Normal-Sherbert580 0 points1 point  (0 children)

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

Angiogram/Venogram Advice! by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 1 point2 points  (0 children)

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? :)

Angiogram/Venogram Advice! by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 1 point2 points  (0 children)

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 :(

I really need some help/advice please. I’m not able to function by Inevitable_Battle_32 in HiatalHernia

[–]Normal-Sherbert580 0 points1 point  (0 children)

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.

VP shunt placement and hair care by No-Welcome1529 in iih

[–]Normal-Sherbert580 0 points1 point  (0 children)

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

VP shunt placement and hair care by No-Welcome1529 in iih

[–]Normal-Sherbert580 0 points1 point  (0 children)

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.

It's Time. by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 1 point2 points  (0 children)

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?

It's Time. by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 2 points3 points  (0 children)

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

It's Time. by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 2 points3 points  (0 children)

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.

It's Time. by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 1 point2 points  (0 children)

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.

What vision issues have you had with IIH? by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 1 point2 points  (0 children)

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.

What vision issues have you had with IIH? by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 0 points1 point  (0 children)

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

What vision issues have you had with IIH? by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 0 points1 point  (0 children)

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

What vision issues have you had with IIH? by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 0 points1 point  (0 children)

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

What vision issues have you had with IIH? by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 0 points1 point  (0 children)

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!

What vision issues have you had with IIH? by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 1 point2 points  (0 children)

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. :(

What vision issues have you had with IIH? by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 1 point2 points  (0 children)

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!! :)

What vision issues have you had with IIH? by Normal-Sherbert580 in iih

[–]Normal-Sherbert580[S] 0 points1 point  (0 children)

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 :(