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What would you do?
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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Please don’t give up
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6 ReactionsThe 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.
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3 Reactionsgently: 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.
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3 Reactionsmeryw @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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1 Reaction@fourleaf
I tried that. If you can believe it, the neurologist said that reading images was not her area of expertise and that she relied on the report given with the imaging. When I expressed disbelief, that in a whole office full of neurologists, there wasn’t one person who could read a CT or MRI image, I was basically told, in a very nice and roundabout way, to shut up and quit bothering them.
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2 Reactions@gently
Thank you so much for your kind response. I did get a sinus CT last month and it showed the same thing as the one in 2022, that the right upper sinus was aplastic. Missing. And that there was an occlusion. Can you have muscosal thickening if you don’t have a sinus?
meryw, it seems that if there is no sinus there can be no occlusion. In some cases the sinus is partially developed with occlusion that can be remedied by surgical procedures. In wording aplastic doesn't differentiate, occlusion does. You may have an underdeveloped (hypoplastic rather than aplastic) frontal sinus with mucosal thickening and outlet obstruction. Good thinking on your part!
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3 Reactions@gently
You’re the best!
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1 ReactionYou didn’t say where all the tests were done and that does matter. I would get all my records and if possible make an appointment at Mayo, Cleveland Clinic,John’s Hopkins or for me UniversityCalifornia San Francisco. Please, keep pushing for a diagnosis. Neurological problems are some of the most difficult to diagnose. God bless you.
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4 ReactionsPlease, Please do not give up!! I went through a similar problem, where there was conflict amongst medical professionals. not helping, and perhaps apathy, or mis-interpretations. I too had what looked like a sinus blockage, and white matter disease, on an MRI , with contrast! In my case, I have had symptoms for several years, that, even though I told my primary care provider, and neurologist about the symptoms, basically, for who knows what reasons, my symptoms were not addressed by these 2 Doctors! My neurologist retired last year, and my primary care provider’s clinic administrator, had decided, about 3 years ago, that seniors on Medicare, would be scheduled, by office clerks, not Physician’s, to have ONE ‘wellness’ visit a year, where they would get immunization shots, medication list, and vitals taken by nurses, on one visit, and then, the Doctor’s visit was limited to 15 minutes! My last visit lasted only about 5 minutes, and the Dr. only had time to check my breathing, with his stethoscope. There was no time to discuss symptoms, and any of my concerns. The Dr. stated that he was running late, and had to go on to the next patient! Then he proceeded to go out the door, and, on the way out, stated that if I had ‘problems’ during the year, just call the clinic, and their was always a Doctor on duty! 2 months after that appointment I had my first visit with my newly assigned neurologist, who just. happened to be fresh out of medical school! Immediately, she saw that I was having trouble with walking, balance, coordination, and numbness in my hands and feet. Anyway, she had an MRI, with contrast, urgently ordered! That’s when the sinus blockage and white matter disease was found! She, immediately set up appointments with an ENT, and immunologist, and other assignments, for other problems found! So, get ready for this! It was discovered that I had 4 major problems, related to sinus infection, white matter disease, and symptoms that I had been having! I had 4 new diagnoses, that are major ailments! I have discussed which ailments, in other posts I’ve made here on Mayo Clinic Connect! So, had I given up, and not pursued changing to a new neurologist and a different primary care provider, truthfully, I don’t think I’d be alive today! The diagnosis of a rare immune deficiency disease, by the Mayo Clinic professional staff, changed and improved my life, immensely, once I started treatments! Good luck to you!! I hope my story gives you some courage to carry on, and not give up!
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