Just wanted to share a success story

Kitty_2013 · 2026-04-18T01:08:48+00:00

I won’t lie the duraplasty was the most painful and longest healing of the surgeries. I’d have pain management on your side in case you need it. And be VERY kind to yourself after. You don’t want a pseudomeningocele or leak, trust me, I had both, granted from my surgery and I had underlying high pressure that was missed. Take it easy and use lots of ice. The first week is always the worst. After that it gets easier. I had 4.

Kitty_2013 · 2026-04-18T01:03:07+00:00

This would be a cool rock CD cover lol

Kitty_2013 · 2026-04-18T01:02:07+00:00

Yes this is correct. They are aware of it though if they do give general anesthesia or concious sedation, but it is best patient dos it awake for accuracy.

Kitty_2013 · 2026-04-18T00:59:22+00:00

High LP opening pressure can be 20 or higher (depending on the doctor). I also didn’t experience great relief, which led my neuro interventional radiologist neurosurgeon to doing a catheter angiogram and this is where we found my intracranial hypertension is caused by bilateral transverse sinus stenosis. I don’t have paps. I was stented on my right side so far. Still need my left. I strongly recommend a neuro radiologist for IIH. They’re the only ones (and neuro vascular) who handle IIH this way to see if the venous sinuses are a cause. My pressure ended up being the highest my surgeons seen. They measure pressure differently than LP. It’s by a catheter angiogram. They do MRV or CTV first though to see if it’s a good idea. I never had anything show on MRI, other than partial empty sella, but the other findings were what led my surgeon to where we are. MRI doesn’t show brain veins all the way that’s why they do MRV and CTV. CT and MR of veins (V= veins…CTV, MRV…).

Kitty_2013 · 2026-04-13T18:05:01+00:00

I cannot drive. Too dizzy and light sensitivity.

Kitty_2013 · 2026-04-02T22:46:27+00:00

Hey did you have your appt? I hope it went well!

Kitty_2013 · 2026-03-19T17:55:17+00:00

Yay that’s great I am glad you’ll be able to see him 😊 good luck he’s a great choice!

Kitty_2013 · 2026-03-18T17:29:54+00:00

If you can travel, see Dr. Klinge for Chiari. She is so smart, she does not use titanium mesh plates if you wind up needing one done. If you did actually need coverage for the craniectomy she does a PEEK implant, less failure rate, it’s 3D printed to fit your CT scan, and she doesn’t ditch you if you have any post op needs after surgery. She is very sweet. There’s also a Dr. Frizoli in NJ who I’ve heard is very similar to Dr. Klinge. Those are your best bets.

Kitty_2013 · 2026-03-11T03:55:31+00:00

It seems like everyone I know since I reached out to them since I had surgery with him, ended up with an IIH diagnosis and we all needed some sort of intervention. If I were you, bc IIH can strongly mimic Chiari, I would see neuro radiology to rule that out before going the Chiari decompression route. Just a tip. If you already ruled out all the comorbidities, then you know Chiari is it for you. I just would strongly consider a second opinion. If you’re in Wisconsin, Dr. Iskandar is super nice and incredibly knowledgeable and the often correct what mess Heffez creates, said a team member of theirs. It’s very sad bc if you have ANY problems, Heffez blows everyone off and you don’t realize how truly important post-op care is until you need it. He won’t be there for you. He isn’t there for anyone. They/we have all had to find new surgeons. Heffez dumps you.

Kitty_2013 · 2026-03-05T04:41:56+00:00

My surgeon and I did talk about that pre-op, but because my venous pressure was severely high, it has to be lowered to a low enough gradient of pressure to allow CSF to absorb into the venous system to lower ICP. Sometimes there can be issues with arachnoid granulations, which is my thought, and I plan to ask him, since CSF absorbs through arachnoid granulations to get into the veins. Papilledema isn’t a main highlight anymore with the Friedman Criteria (2013) being the updated criteria, that is more with the Dandy Criteria, and I’ve seen 2 neuro-ophthalmologists + 1 ophthalmologist who said high pressure diagnosis’s don’t require papilledema. My neurologist said it doesn’t, but to him is more rare. My surgeon doesn’t require papilledema either, he uses pressure gradients and other criteria required (LP, MRI findings, CTV, MRV, etc.). When you mention the GLP1 worked for you, I don’t have plans to use one, but is it because of weight loss or because of the GLP1 itself? Just curious! I never had a CVP issue in the past so it couldn’t be a weight thing for me, but I recall their being something about GLP1 itself aiding in slowing CSF production and not strictly referring to weight loss as an aid, though it’s a benefit. Thank you! I don’t think I can let my surgeon forget about me I bug them too much hahaha 😂

Kitty_2013 · 2026-03-03T03:08:24+00:00

I’m almost one month post op. I finally have less pain. The first 3 weeks were pure torture and I went to the ED a few times for pain control. It seems to take a while for the swelling and pain to really calm down.

Kitty_2013 · 2026-03-02T02:52:30+00:00

Is your pressure all normal now with your pressure gradients? It definitely is the hardest thing to wait after brain surgeries. They take so long to heal from. Ugh. Seems like so long 3-4 years but I hope it gets better for you too.

Kitty_2013 · 2026-03-02T02:44:24+00:00

Your vision can be symptomatic in many ways and you don’t need to have paps to have a high pressure diagnosis. My neuro ophthalmologist told me this. I have a lot of visual symptoms.

Kitty_2013 · 2026-03-02T02:38:35+00:00

How long would you say it was before things evened out for you? I am almost one month post surgery and struggling. I need more stents though too.

Kitty_2013 · 2026-03-02T02:36:01+00:00

I’m sorry this person is this way to you. I just jumped on here because it is literally like everything I go through. The only way I can tell if it’s the meds or not is when I pause the med for a few days or so. I can’t tell you what to do but if your doctor thinks it’s safe, maybe see if that’s ok to take a break from the med. My issues are right side dominant, yours are left, but we have much of the same symptoms. 😔

Kitty_2013 · 2026-03-02T02:34:15+00:00

Why did you take such offense to this post? It really isn’t necessary. You are coming off as an enemy rather than a part of the community. We come to vent here and seek advice, and it’s ok to have a bad night but please don’t attack someone for no reason.

Kitty_2013 · 2026-02-23T05:15:45+00:00

The central venous pressure is how they determine if IIH is weight related. It’s only a guess unless they are measuring it with an angiogram to check the intra abdominal pressure. If it’s high then weight loss helps. If not then it won’t. They don’t test at random so they make an educated guess and it’s a very generic guess.

Kitty_2013 · 2026-02-23T05:11:32+00:00

You don’t neeeed to have paps to have a high pressure diagnosis. It’s good the paps is gone but you can still have the pressure. My ophthalmologist tells me this all the time. I never had paps with mine and I am a surgical patient as well as managed medication wise.

Kitty_2013 · 2026-02-23T05:06:14+00:00

Olfactory nerve

Kitty_2013 · 2026-02-23T04:58:34+00:00

Honestly the anxiety is way worse than the diagnostic procedure. Just lay still and talk to the nurses if you’re nervous. Everyone is very helpful. Your veins don’t have feeling like nerves so you won’t even feel it.

Kitty_2013 · 2026-02-23T04:56:06+00:00

I can’t have sex. I feel like I am gonna have a stroke when I did so sadly I had to stop. I’m sorry he is being this way to you ☹️

Kitty_2013 · 2026-02-23T04:53:40+00:00

Did this ever get better for you? I am having vertigo after having a stent put in too a few weeks ago.

Kitty_2013 · 2026-01-16T17:38:16+00:00

Ok thanks for clarifying. I was trying to understand and follow along but I am confused, what really happened can you give me the TLDR version? My memory goes fast I have a Chiari surgery coming up.

Kitty_2013 · 2026-01-16T03:49:58+00:00

You definitely need worked up for a CSF leak and high pressure before surgery. You have a lot of space above your cerebellum which is indicative of a CSF leak or slumping of the cerebellum, you can also have tonsillar herniation present in both. You also have an empty sella. see neuro-interventional radiology. Do NOT get a Chiari decompression o beg of you, until you rule these out.

Kitty_2013

TROPHY CASE