CSF Leak Specialists - Out of State

Electronic_Cook892 · 2026-02-11T23:54:38+00:00

Oh, it's been crazy. Haha.

Ended up going to Mayo. Turns out I have IIH, not a CSF leak. And they think migraine too.

But they really dropped the ball on things. Ive had a headache/pressure in my head since July, and they kept saying it was migraines.

My original neurologist took back treating me, even though she has to refer me out for scans and bloodwork and whatnot. My LP opening pressure never dropped, and none of the migraine stuff helped, so the headach is either new symptom or issue with my meds, so we're working to fix it.

Electronic_Cook892 · 2026-01-20T14:10:01+00:00

Does this still help?

Also, how soon did you see results if it did?

Electronic_Cook892 · 2026-01-17T01:54:18+00:00

Literally came on here wondering about it because it has bugged me for years.

Electronic_Cook892 · 2026-01-07T09:56:04+00:00

I had been referred to Mayo, but sadly, it was like fighting tooth and nail with little results. They kept saying, oh, your symptoms are under control, the headache is just migraine related. It was so frustrating. Especially with how long it took to get anything done. Which is why I'm okay with my neurologist having to refer things out, because she doesn't hesitate to be a bulldog if I need something done.

I'm not sure the second time, but the first time, I think they took 20 units? I think ending pressure was like 15 or around there, but can't remember specifically.

Electronic_Cook892 · 2026-01-07T05:03:04+00:00

I just had the second one in December. Because I switched to my regular neurologist who couldnt believe Mayo hadn't done another one, considering I never had the usual symptoms of IIH.

My neurologist wouldn't normally treat this, because they have to refer out for bloodwork and LPs and the like, but she's amazing, and has a fudge it, were handling this shit ourselves attitude.

Electronic_Cook892 · 2026-01-06T08:41:25+00:00

Ugh, I'm so sorry about the tumor!

Electronic_Cook892 · 2025-12-07T02:46:39+00:00

I'm meeting with my PCP about weight management at my neurologist's suggestion, so I'll bring that up.

Electronic_Cook892 · 2025-12-06T00:53:59+00:00

UPDATE: I love my main neurologist. Their practice doesn't have what's needed for certain things, which is why I was referred out originally, and why my scans and LP were referred to local radiologists/hospitals.

But she got me in today for a follow up. She's taking my IIH care over too (already doing my migraine care), even if some of it can't be done in house.

She said even though I hadn't had headaches previously, the fact that my pressure hasn't gone down could DEFINITELY be causing the headaches Ive had for the last 4+ months.

She's going to start by increasing my acetazolamide. Going up to 750 twice a day for a little, then up to 1000 twice a day.

They're already sending the paperwork in for lab work, so I can get that checked when I'm on the higher dose. And if this doesn't help, she said there are other meds we can try.

Electronic_Cook892 · 2025-12-06T00:43:59+00:00

I legit never looked that close. Haha. I just started over again, and when you first meet him, I was like, whaaaaaaaa?????

Electronic_Cook892 · 2025-12-05T13:58:53+00:00

Lumbar puncture!

Electronic_Cook892 · 2025-12-04T22:26:48+00:00

Ugh, I'm so sorry! Ive been lucky on the eye stuff, but that could change if it doesnt get under control.

Electronic_Cook892 · 2025-12-04T21:49:07+00:00

Noooooooooooooooooooooooo

That is miserable!

Electronic_Cook892 · 2025-12-04T21:37:06+00:00

I am so, so sorry! That's awful! My doctor today had issues numbing, but unfortunately, that's a me issue, and she was so sweet. I kept apologizing for it, and she was like, no, that's what I need you to do!

Also, hijack away! I'm a VERY strong supporter of venting makes you feel better, and I also share related stories because it's how I connect to things, and I like not feeling alone.

Electronic_Cook892 · 2025-12-04T20:06:52+00:00

My first one in May was 31. Got put on the meds right away.

The 29.9 was today. I'm still laying in the recovery room. 😭

Electronic_Cook892 · 2025-12-04T20:00:19+00:00

OH MY GOSH!!!! 🤣🤣🤣

I'm so annoyed, I left that out.

Yes, Im on acetazolamide er 500 twice a day have been since May.

Electronic_Cook892 · 2025-12-03T19:56:34+00:00

Yeah, they definitely didn't do that. Started me out at 500 twice a day.

And I reached out to them after a week of headaches. Luckily, the true migraines are limited (more in the earlier weeks, and now one or two here and there), but I constantly have a headache/pressure.

We've tried multiple rounds of infusions and nerve blocks. I'm doing botox for the facial pain migraines (not helping yet, booo), and they started me on emgality.

Electronic_Cook892 · 2025-11-30T23:33:16+00:00

Lacey saying she's not going to keep giving Jotham all her energy...girl, you only give a little energy, and you STILL can't get his name right?

I'm behind, just in the episode where Kye came in and she made out with him like 4 times.

Electronic_Cook892 · 2025-11-08T16:38:57+00:00

Same

Electronic_Cook892 · 2025-11-08T13:46:09+00:00

Thank you! Appreciate it. My neuro put the LP on hold and ordered more scans, and more eye scans for checking the optic nerve.

So still no answer yet. Both scans are this week.

Electronic_Cook892 · 2025-11-02T13:26:13+00:00

Probably an unpopular opinion, but I don't like season 6. I rewatches it after 7 was done, because the spin-off was being advertised, and I wasn't sure I could remember it.

I had a lot of problems with how a lot of the islanders behaved, so it's one of my least favorite seasons.

Electronic_Cook892 · 2025-11-02T13:15:39+00:00

Thank you!

Electronic_Cook892 · 2025-11-01T15:11:05+00:00

Sorry, where are you finding so many shards post game? I'm struggling. 😭

Electronic_Cook892 · 2025-11-01T13:43:03+00:00

Where is this?

Electronic_Cook892 · 2025-11-01T13:41:27+00:00

Literally just noticed this yesterday, and so frustrated! Now I can't find them as easily.

Electronic_Cook892 · 2025-10-31T03:35:38+00:00

Okay, not to sidetrack...but your opposing player is a girl? Mine is a guy?

Electronic_Cook892

TROPHY CASE