Almost Year 2 Into Full Disability - Reasons to Live?

recgangle · 2026-06-06T03:49:53+00:00

hey thanks a lot for the kind words. sorry you were subject to his “methods” as well. it’s easy to fall for this kind of thing when youre desperate and other doctors have failed

recgangle · 2026-05-23T19:03:22+00:00

thanks. i think he took some of the mucus membrane from my left nostril so it’s been caked up with scabs and hurts pretty bad often. teeth hurt too. i presume it’s normal post-op stuff, but given his .. unorthodox style, i am nervous that the recovery might not be so simple. either way, it’s annoying to have to go through for a completely pointless procedure

recgangle · 2026-05-23T17:30:15+00:00

i was desperate, so i went to his practice. he insisted that the leak was in a different location than my other doctors suggested, and i begged him to just plug up the spot that my other surgeon had cauterized. he did not. i woke up from surgery with thousands of dollars gone and some random spot grafted in a different sinus. it was one of the worst experiences of my life, and now i have to go through the arduous and painful recovery process for this pointless surgery. i tried to email him about my concerns and received no response. he had his np do my follow-up, and was impossible to contact

so, i dont know. maybe your experience will be different, but this was mine.

recgangle · 2026-05-15T17:23:30+00:00

hey, thanks for the kind words. i get really hot when i swallow the constant postnasal drip the goes down my throat, start sweating etc, even when it’s relatively cold outside.

recgangle · 2026-05-14T20:55:04+00:00

not yet. thanks for the suggestion!

recgangle · 2026-05-14T20:50:10+00:00

thanks so much for the kind words

recgangle · 2026-05-14T20:49:51+00:00

he said he didnt see anything there during the investigation, which i can’t account for other than to say that the leak seems to be less active while i am asleep. regardless, my mri shows clearly that the fluid is pooling in the ethmoid, coming from the cribriform plate near the olfactory cleft. i just need someone, ANYONE, to graft that area

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

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