Sorry it took so long 2 get back on here, the last few days have been complete chaos & I'm beyond exhausted mentally, emotionally,& physically. The PA that I saw on Wed was even confused about why the portion of my brain that seemed herniated appeared to be a different color than the rest of my cerebellum. After going through my exam & explaining all of my symptoms, she had 2 NS look at my MRI & Dr Cheng studied several of the slides & said that it was a blogs vessel, not a brain herniation/chiari. His PA was still confused about how my symptoms are so much like chiari though. She was also confused & seemed to have a very puzzled look on her face when she was checking my reflexes & my right knee did not respond even after several attempts with the little reflex hammer in several different spots. I roles her that I also have issues with my lower back & middle back & I showed her how my left eye crosses (nystagmus I know) but she says I definitely need to get to an Opthamologist about it. To sum it all up, she wants to see the discs of the tests I'm having done Monday to compare with the one she looked at from last May so she can see if there's anything new or worsening, I plan on getting 2 copies before I leave from having them done, sending her copies of them, & keeping a copy of them for myself. I also plan on sending her a copy of my patient information intake sheet that I filled out when I first went to the NS which ordered the MRI of last May just to show her my symptoms were the same before I started doing all the research which led me to the question of Chiari in the first place. So, until I have jy new tests done & can check for anything new or worsening, I guess the only thing I was told at my appointment that I to see what the new tests show & go see an Opthamologist, start researching NL more locally again to find a good one for me about my headaches. After looking at my xrays, I know the reflex issue has got to be what is causing my lower back pain, numbness, tingling issues. So I guess neurological issues in my lower back a also middle back needs to be investigated as well.
So in a way, it was good news, but that doesn't help with my chiari like symptoms at all. I plan on taking my laptop so I can view my new mri discs as soon as I get my hands on them,too.
I'm just wondering how ironic it is that the very first NL I went to about my migraines over 18+ yrs ago was right when he said I have a blood vessel pressing my optical nerve & that's what was causing my HA....too bad he isn't still aroundthough, he died many years ago. I just wonder how I can be having all of these other symptoms & issues that, I've suffered with all of these years :-( also, what can be done, if anything...guess Monday can't get here fast enough...
I just want to be able to have at least one day where I feel normal & pain/symptom free...is that ever gonna happen? Plus the pressure on the right side of my head & my right eyeball hurting is getting more & more annoying. Even when I told the PA how I've always described my HA after my eyes act up like my brain feels like it is loose inside my skull & I've sneezed before while lying in bed & it messed my vision up for almost 3 hrs straight, she said that sounds just like Chiari, I just don't understand that. She was about to see about having a flow study set up for me when the 2 NSlooked at my MRI & said it was a blood vessel, so they shot that plan down before she could get it arranged which bummed me out because that could've showed why my brain feels loose & hurts for days after an episode. So even more runaround for me is what it seems I have in store for me....
Well, time to spend the day with my son, I guess I get to attempt to mow the grass before it gets much higher...riding mower, still hurts but when u have no one to help, u get to take care of everything yourself :-(
I feel your flustration. It is the hardest issue to deal with is waiting for the answer's. What would they do if it is a blocked blood vessel? Still seems like they would of wanted a flow study done due to you having this issue. Your in my heart and I'll have you in my prayers for Mon so you can get the answer's you are needing.
Hi...I think I understand the correlation of symptoms...both of these issues, the chiari and the blood vessel both r putting pressure and compressing the brain stem...so u will have the same adverse affects or symptoms...it is how u r getting the compression...and Y when people have symptoms I say it is not the size of the herniation, but if u have an obstruction or overcrowding...bcuz they put pressure on the brain stem.
Thanks guys, I just don't understsnd it at all either...if it is a blood vessel causing my issues, then how can that be dealt with? A blood vessel to/in my brain seems pretty necessary & I'm wondering what will be the answer if the vessel itself is herniating even more? (Charlie Brown UUUUUGH! lol) I an, really anxious to see the new test results & I'll post em so I can get ur input.
Selma, I've even noticed a weird shadow along the right side of my spine in the xrays I posted which is exactly where my spine itself is curving out, I started looking at the xrays after I got to thinking about my reflex being absent in my left knee when the PA checked it & she even seemed puzzled about it. Even my pelvis & lumbosacral part of my spine is clearly off center & no wonder I couldn't have my daughter naturally, had 2 have emergency c section...take a look when u get a chance & let.me know if u see what I'm taking about. Plus the sideview of my lower back with how bad the curve is...no wonder I have so much back pain 24\7 :-(
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