I am wondering if any of you can hear your heartbeat along with the tinnitis (which I like to refer to as my "white noise", as that is what I've always thought it was!) I can't describe really what I mean, but it's almost like water rushing through at different pressures, or maybe more like the sounds of a fetal heartbeat with the "whoosh-whoosh" sound...? I guess if you have it, this would make sense, and if not, it won't... but if you do have this, have you been able to describe it better to your docs?
Also, do any of you have times when you're not even moving and all of a sudden the "pressure" seems to change (almost like your ears popping, but they don't), and the "ringing" becomes significantly louder? And it isn't that your ears pop, because you can't do anything to make it stop. It seems to last differing amounts of time, but goes away as quickly and unexpectedly as it comes on.
I can't figure out how to explain this so it makes sense to someone who doesn't have it! I hope I painted a good picture for all of you!
No, I haven't gotten a CINE MRI yet. As you may or may not recall, I am the one who was diagnosed 12 years ago and all of my doctors ignored the diagnosis and said it was irrelevant.
Even though I have the old ones, the specialists want new MRIs before they will agree to see me. (I am very frustrated over this, as they aren't making it much easier for us. No wonder it takes 6 years on average for us to get treatment!) I am still trying to find a doctor (pcp or otherwise) who I can convince to order the MRIs so I can then send them off to UCLA, though I have contacted several chiari specialists who demand the same thing. My MRIs are just too old.
I am returning to an old pcp as I think I can get through to him. He himself has MS and thought years ago that I might too! The results of course, were negative. He was the first of three to think I might have MS! I just hope he will realize that there are struggles we go through when our "pain" and symptoms can't be seen and touched. I'm praying so anyway! I see him next Monday.
Yeah, I needed that refresher on ur history...u know us with chiari....lol.....
I had MRI's in early Jan and Feb '08 and until I got to see my NS needed to have them all redone in '09....so, u r not alone and changes can happen in a short time frame so many NS want the MRI's to be less than 6 months old.
Well Good Luck next Monday and do post an update !!
i absolutely know what you are talking about! i can frequently hear my heartbeat and to be honest, it's rather annoying! i'll taking the ringing any day over that! not that it hurts or anything, it's just weird....and annoying! lol!
Hmmm...I don't know if this is the same thing or not, but sometimes when it is really quiet and I am still I can hear the sound of 2 coins rubbing together in my neck...nobody else can hear it, lol, but I can.
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