What would you do?

Posted by meryw @meryw, 4 days ago

I recently discovered that a CT scan I had done in 2022 showed that I had no upper right sinus cavity. No one told me this at the time. It also showed areas of Cerebral white matter mild poorly marginated bifrontal periventricular with decreased density. No one told me that either. Not that I would have known what that meant.
The point is, I have had NUMEROUS CT scans and three MRI’s of the brain (including one with and without contrast) and every single one of them declared that everything was normal. They specifically stated that my sinuses were unremarkable and that there was nothing else that was of concern. Until last week, when a new CT was diagnosed with the missing sinus and an occlusion of 4mm where it should have been. The doctor who showed me this occlusion was an ENT and when I asked him what it was, he said “Not my job. Call your neurologist.” The problem is, the radiologist missed it, didn’t include it in the report, and when the doctor was asked about it, he denied showing it to me. A case of CYA in my opinion.
I’m scheduled for another brain MRI soon, but I feel like all these years I’ve been told that my symptoms were psychological, when in the meantime, my new neurologist seems to think I may have MS. I guess we shall see.
Would you seek out a doctor that would go back over all those old tests just to see what the progression has been or would you let it go? Would you trust that the results of the upcoming MRI (being done at the same place) were accurate? Would you get a lawyer to sort it all out?
I’m just curious. I feel like I’m dying and I have lost control of my body. I’m in a massive amount of pain and all they want to do is mask it with addictive drugs or spinal implants.
I’m ready to just give up.

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bigj | @bigj | 4 days ago

Please don’t give up

gently | @gently | 3 days ago

The 4mm occlusion may be muscosal thickening, but it is preventing the sinus from draining properly; we know because of the word occlusion. This description seems a little different that the 2022 CT which seems to indicate that you have no right frontal (I'm assuming) sinus cavity. The "cerebral white matter mild poorly marginated bifrontal periventricular with decreased density is an incidental finding showing mild white matter changes.
My mom was born without frontal sinuses, which is the only reason I know anything. She didn't know until she was in her late seventies. And that wasn't a problem, but separately her maxillary sinus became completely occluded. Her physicians thought it was a sinus cyst, but a sinus specialist performed the FESS procedure, knowing that it couldn't be a cyst if it filled the entire sinus. It was a fairly simple procedure, but fairly new. All the physicians in the practice crowded into a tiny room to watch the procedure for the first time. https://texassinusandsnoring.com/blog/functional-endoscopic-sinus-surgery/
People with MS usually have a lot a sinus troubles.
Meryw, what I would do is have sinus CT to determine if the sinus cavity is there, if it is blocked and if it could be cleared by a simple balloon sinuplasty or FESS.
I would also follow with the neurologist who speculated about the possibility of MS and who seems to be proceeding with the MRI to look for changes in specific areas of the brain. I hope they are able to rule it out.
I think it's too early to start looking at MS information except to check your symptoms against noted MS symptoms. But if you were to get a MS diagnosis you should know https://www.mssociety.org.uk/research/latest-research/research-blog/behind-headlines-car-t-cell-therapy-ms
I hope you keep us posted on your situation.
Wishing you the best.

Maryann | @mkoch | 3 days ago

gently: You offered such a logical and detailed response to meryw. You have responded to queries from me on the osteoporosis site as well. Thank you for taking the time to to offer your insights to those of us looking for advice.

fourleaf | @fourleaf | 7 hours ago

meryw @meryw

I would call the Hospital System Imaging Department, where you had previous CT Scans and MRIs, and have them sent to your new neurologist. Doesn't cost anything.

Best wishes to you!

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