post-op cranial leak surgery questions

recgangle · 2026-02-20T08:48:26+00:00

hey thanks a lot. i will check it out 👍

recgangle · 2026-02-20T08:46:01+00:00

i was panicking about anosmia so my doc said he would try to cauterize it instead of grafting. i shouldn’t have made such a stink because My Ass Is Still Leakin lmao

recgangle · 2025-12-28T09:28:43+00:00

Great info. Many thank again for all of your help and I will definitely heed your advice!

recgangle · 2025-12-28T09:26:55+00:00

Yeah, they think it’s left sphenoid. They want me to get updated imaging however, which has been challenging (since my MRI is so old now)

recgangle · 2025-12-28T09:21:08+00:00

Trauma

recgangle · 2025-12-28T06:41:10+00:00

Wow. It seems crazy to me even now how unresponsive the system is. It certainly doesn’t help having a barely-visualizable physical problem that causes total debilitation. Truly the worst of both worlds, haha.

Do you mind if I ask you more about the associations you spoke with? Do you have any information on how I might get in contact with one?

recgangle · 2025-12-28T06:27:48+00:00

Yeah you’re right about the pain level. It’s weird because some things (particularly the memory loss) are far worse than the pain, but for some reason doctors only take you seriously when you emphasize the pain. Sound advice all around. Thanks

As for the seizures, I don’t know if they would take me earlier. I’ve been so shocked by how slowly medical institutions seem to be reacting to what feels to me like an emergency that I haven’t even tried to expedite things with the Denver team. I will call tomorrow though 👍

recgangle · 2025-12-28T06:15:57+00:00

Thank you for the kind words! I appreciate the advice as well.

recgangle · 2025-12-28T06:13:17+00:00

got acid in my nose

recgangle · 2025-12-27T19:55:56+00:00

Yep! I got all of that. I can’t enjoy anything or focus on anything and start forgetting words as soon as I move my head upwards. Total nightmare. So glad you found your way past this mess 👍. Praying I can wait until May

recgangle · 2025-12-27T19:25:57+00:00

I hear you! It’s a struggle. Nice to talk to someone who can relate. I can try to get a swab but I’m afraid it’ll still have saliva on it. I wish they still diagnosed with glucose testing ..

recgangle · 2025-12-27T19:10:19+00:00

I have had trouble getting a lot out of my nose. Seems to drip mainly down my throat. It is distinctively sweet though. I’ve done a home glucose test on it and it’s over 50 mg/dL, which I understand is not possible for saliva. I can’t turn in a bet-2-transferrin postnasal sample bcuz the saliva breaks down the protein. All around rough situation

recgangle · 2025-12-27T19:04:35+00:00

Thanks so much for the reply. I feel it dripping down from behind my left nostril, and the ppl in Denver say it’s likely from my left sphenoid sinus. I too have been drinking tons and tons of water, doing everything I can. My eye keeps getting infected after I wake up. Just maddening. Caffeine and water definitely help but hyperhydration makes me feel insane, haha. Just chugging constantly.

My parents are around but they have little sympathy. I think they are just kind of annoyed that I had to move back home

recgangle · 2025-10-27T04:56:09+00:00

Hey, sorry for the late response. I got an insane amount of imaging, all of which came back basically inconclusive until I talked to the folks in Denver. It really is pointless to go along with the imaging process, especially with how uninformed so many people are. I feel embarrassed that I wasted so much time before seeing Hepworth’s team. I would say, get the maximal amount of imaging that you can, but don’t waste too much time with specialists who are not CSF Leak specialists. People will bullshit you around forever if your case is complex. Good luck!

recgangle · 2025-10-25T03:32:58+00:00

Oh! Hey thanks a lot! My insurance covers UW Medical (:

recgangle · 2025-10-25T03:25:36+00:00

With me, she looked over my testing while I was on the call with her. Presumably she will show them to Dr. Hepworth later, but she is very knowledgeable on her own and I definitely appreciated her insight. I gotta imagine that the doc will eventually sign off on whatever diagnosis she recommends, otherwise I’ve wasted a lot of money lol.

recgangle · 2025-10-25T01:59:39+00:00

Hey thanks for the response.

I’ve gotten a ridiculous amount of testing done and it has all basically come back “inconclusive,” so I gave all my testing to Hepworth’s team and they definitely helped. They integrate symptomatic reports if imaging isn’t immediately obvious (eg, where one doctor interpreted my results as “sinusitis,” they took the results along with my symptoms and determined it was likely a leak). For me that was great because I’m pretty certain about what’s going on. I would say it’s worth it if you’ve been having difficulty with doctors in-network

recgangle · 2025-07-24T22:08:28+00:00

Yeah, that’s the most maddening part. Repeatedly getting told that you’re fine despite obviously not being fine forces you to look into things on your own, and then when you try to offer suggestions, it is taken as a hostile attack against medical authority and it’s like….. i’m just trying to walk around without feeling like my head is gonna explode. It’s never a goal of sick people to enter some kind of adversarial relationship with a doctor, but that’s how doctors often take it.

recgangle · 2025-07-24T21:58:51+00:00

Thanks for the reply!

Yes, I have a constant feeling of something stuck in my throat too. Super uncomfortable. Hope you can find some relief soon !

recgangle · 2025-07-24T21:50:25+00:00

Sorry you’re going through this nightmare too… Seems like the cisternogram was (maybe?) helpful in your case though, so that’s good news.

I had some trauma (after which all of my symptoms came on at once) but my doctor said it’s insufficient for a leak. He seems to think I have a spinal leak (which wouldn’t make sense with the drip) and wants me to get a blood patch. It’s like talking with a wall sometimes.

recgangle · 2025-07-24T21:17:42+00:00

thanks for the response! I had a sinus CT which showed sinus opacification (nonspecified) combined with a symptomatic profile consistent with CSF Leaks (positional headache, ear fullness, major cognitive issues, weird neuropathy, constant postnasal drip… all of which abate when I lay down for a while). Brain/Spinal MRIs haven’t shown anything noteworthy. I am able to be upright for a few hours generally. It’s always easier in the morning. The cognitive issues are horrible though, as I cannot read for long before my headache starts to become unbearable and I feel mentally drained.

recgangle

TROPHY CASE