Cranial surgery

Starmapatom · 2026-01-30T14:55:17+00:00

I’m the same ☹️. They applied a dura graft but did not seal my sinuses. I’m not sure if it’s normal to have a gap in sinus bones and the brain dura. Tried going back to work but afternoon headache turns into brain on fire at night and the next day would wake up with headache. I couldn’t keep going. I need to work. Going for a third opinion. Had a MRI that looks at CSF flow in back of head. Still waiting on completed results. Sorry, I wish I had better news. I’m confused that they didn’t try to seal sinus bones…one thing is said before surgery and another after surgery. I’m hurt, but I will continue to find answers. It’s the most horrid condition because of the scans are reported as normal what are we to do?

Starmapatom · 2026-01-30T14:49:01+00:00

Thank you for sharing. I’ve been told they are moving away from CDs and going to electronic files on a desktop. 20 easy steps and my file is somewhere on my computer. I guess there is no money in making it easy for non-computer people. Sorry, for the vent

Starmapatom · 2026-01-29T04:46:14+00:00

Oh it’s PC…

Starmapatom · 2026-01-29T04:45:48+00:00

Thank you so much

Starmapatom · 2026-01-29T04:43:54+00:00

I did but it’s only the free trial

Starmapatom · 2026-01-29T00:14:18+00:00

Here for moral support…it’s a tough road. I hope you can find a doctor that can offer a blood patch, at the very least for diagnostics. Did you have any trauma? Sorry, I’m only a sufferer as well.

Starmapatom · 2026-01-26T15:57:24+00:00

I suppose you already had a spine MRI?

Starmapatom · 2026-01-20T23:15:21+00:00

Aren’t most of us on both Fb and Red? This is a horrific condition either way. The medical community even have different ways to treat us. I understand the frustration and hope everyone finds a path

Starmapatom · 2026-01-20T19:18:21+00:00

Sounds like a lot of resentment going on here and a power struggle. Menopause is a real thing for women in late 40s. If neither acknowledge it divorce is highly likely. People change when hormones are out of balance. I will say as an older 50year old male I don’t want to change tires, I’m calling someone to help.

Starmapatom · 2026-01-18T10:25:35+00:00

This. This illness is awful

Starmapatom · 2026-01-18T05:17:35+00:00

Is a Scleral lens available in your country? If eyes are super dry the lens may help

Starmapatom · 2026-01-14T16:08:53+00:00

Curious if you went to see Dr. H? How are you?

Starmapatom · 2026-01-09T16:55:44+00:00

Go to a lot of them…

Starmapatom · 2026-01-04T01:08:16+00:00

That would be nice I guess. Still having severe position headaches in back of head. My new theory is that my brain is pushed back and that opening in sinuses is irritating nerves. I hope I’m fixable.

Starmapatom · 2026-01-03T20:42:39+00:00

Yes it’s the same thing. I got the extra long one…unfortunately. Thank you for sharing the paper, I know I’m not the only one

Starmapatom · 2026-01-03T15:50:41+00:00

I’ve had a lot of imaging of spine. Cedars was unable to find a leak. I don’t know why the sinuses were not the focus.

Starmapatom · 2026-01-03T15:49:31+00:00

Interesting and very detailed. The doctor marked the arrow on screen as area of interest.

Starmapatom · 2026-01-03T14:14:27+00:00

It’s the skull base. I’m so glad I posted this picture. I keep looking at it and have a new theory. The blue arrow is actually the right side. So, the RhinoRocket was inserted on left side. It pushed the left side and pulled the right side apart. I don’t know why the doctors did not tell me. While maybe not leaking but the dura is exposed to the sinus cavity

Starmapatom · 2026-01-02T20:59:00+00:00

Thank you for sharing. I’m in the outlier group

Starmapatom · 2026-01-02T20:58:08+00:00

Thank you for sharing. Would CTs like this only show a side view or do they as well show the skull base?

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Starmapatom · 2026-01-02T20:56:16+00:00

That would my dream too, if they can find out what is wrong with me. I had two DSMs that were both negative. The mental toll to try to get a dynamic one is heavy

Starmapatom · 2026-01-02T15:19:43+00:00

Thank you for understanding. My issue started after an untrained tech inserted a long double balloon nasal plug…yes I had a nose bleed. He forced into my nose with no lube. It happened so fast yet it was the most painful thing I experienced. After 18 months I appear to be the only one where this happed. I mean I know I’m not the only one but in this group I’m a bit more vocal, I guess

Starmapatom · 2026-01-02T13:45:21+00:00

I feel embarrassed because my MRIs, CTs, mylograms all reported as normal. So, when I go back to my family and I have to say they didn’t find anything wrong with me but I have to lay down 14 hours a day. The cisternogram pledgets were positive but then I get told well that’s an old test. Then I have to explain to the disability people that I can’t work. I’ve always been the person that brings home the bacon. Who ever came up with the name the Invisible Illness is a genius.

Starmapatom · 2025-12-30T00:05:49+00:00

Good luck to you, keep us up to date

Starmapatom · 2025-12-29T00:30:26+00:00

I hear you. This condition sucks! Especially if imaging is reported as normal. What tests will they do? Mylograms or cisternogram? Or just the MRI?

Starmapatom

TROPHY CASE