I am relieved that I will finally be getting a brain MRI to find out what is causing my immobilizing headaches, brain decline, forgetfulness, and various other symptoms. I am glad my doctor believes me and she validates me and is concerned as well and agrees with me that it’s not normal and that something’s wrong. It will good to finally have some answers and to know what we’re dealing with, unless, of course, it comes back normal(although I doubt it; SOMETHING has to be causing me all this trouble and show up)or inconclusive and then we’re right back to where we started. I was also surprised to learn when I was doing research on Chiari Malformation(the most likely possibility at this point, unless it’s an amazing coincidence since I have so many of the symptoms and everything’s all connected) that frequent urination, irritable bowel syndrome, and hearing loss(all of which I also have!) are also common in Chiari sufferers(on top of all the other symptoms I already have) but until now I never knew were related; I just thought I peed alot as I was just “stretched out” from having all the kids, and that my daily cramps and diarrhrea was perhaps Crohn’s or Colitis, and that hearing loss was just a natural part of aging….The more I read, study,and learn, the more I find that all my ailments are connected and are all somehow related to my Marfan’s and/or Chiari. Chiari also only affects 1 % of the population(just like my Cholestasis was,too!) but that’s me; I always end up being that rare exception, the unusual statistic, the unexpected reaction, the unlikely case study, but never in the good way though; not in the lucky sense! I’d be the one-in-a-million that would get hit by lightening, not the one-out-a-million that wins the jackpot!
I am eager to have the scan and find out what’s wrong(and to get it dealt with) but I also have concerns about getting the scan such as what if I have a case of diarrhrea( I get it several times daily and usually have to take an Immodium daily) while I’m stuck in the tube for an hour? What if I have to go pee?( I generally have to go every 10 minutes or so) or I have an itch or have to sneeze? What if when they scan my brain they say they don’t see anything; that I don’t have a brain, or that it all shrivelled up and it’s really small(I’ll be sooo embarrassed!) I seriously wonder as well if I’ll even be able to stay completely still for that long(esp. with my sore back!) and I’m worried what if what they find ends up to be something really bad(like brain CANCER or something) or if they don’t find anything at all(and then I’m still no further ahead!) The gross thought occurred as well for people getting whole body scans if they’re on their periods that the scan would actually show the tampon in there,too (I laughed out loud at the gross visual at that one!) kind of like the naked body scanners at the airport, and if I end up getting my scan in 2 weeks I’ll be on mine as well. Ugh, “perfect” timing.
Either way, I’m glad to finally be getting tests done. The blinding headaches of Chiari are commonly misdiagnosed as migraines and the detection of Chiari is typically overlooked by doctors, and the malformation is often misdiagnosed and hard to treat and patients typically suffer for years before it is recognized and treated. For me it may even end up being something as simple as herniated discs in my neck causing neck pain and headache(although it still doesn’t explain all the other symptoms) although I have a strong suspicion it’s Chiari more and more all the time and expect that’s what will most likely show up(as does my doctor) and will actually be surprised if it isn’t….