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07-03-2012, 05:15 PM | #1 | ||
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New Member
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Hi there,
It all started with a Headache in June. In July it was 24/7 with the exception of laying down, which took it away a 100% I was dx with a cervical issue. I had surgery in Sept 2011. 5 weeks before surgery And 5 weeks after surgery I woke up with vertigo/bppv. Epley took it away both times. Left me dizzy 24/7 mild to severe. Surgery took my HA away for 9 days it returned. 3 weeks later I got steriods and HA has been gone since Nov 5th 2011. Moving along.... I have developed another type HA. It usually comes on in the morning. It starts in the back and after walking around/being awake it moves to the front and right eye. Its usually mild/moderate. I have seen every doctor under the moon and they either say I dont know or I have vestibular migraines. I have had migraines before, but I count 6 and Im 39. I had a brain MRI and that has changed doc hands numerous times and it was only in February that a doctor mentioned that I had Low Lying Tonsils. 3mm. But it is technically not chiari. Im on 10mg of Nortriptyline and that has helped, but Im not 100% at all. My Chiari MRI Flow tests says that my velocites are raised on the right side, but still in normal range. "Probably not Chiari". My symptoms are: Dizziness everyday ranges from mild to moderate Headaches- here and there but always before menses. Usually in the morning, sometimes back right, or frontal and eye. Eye pain that hurts with eye movement, comes and goes Feel heart beat in ears when I lay down. Comes and goes Tachycardia Jaw pain- always there, goes into cheeks, below front of ears Scalp- tender painful spots Sore throat- very mild comes and goes Neck pops ( never used to, even after first surgery) Dizziness increases when I move my head around Vision is just different, cannot explain. Not blind, but shimmery..? Have floater type things in vision. Do not really move though. Not migraine types. These come and go and last hours. Also have seen bright lights in my pheripheal vision. Haven't for a while. But see stars in bright sun sometimes. Sensitive to glare Sensitive to loud noise Sensitive to people touching my head Hands and feet cold all the time. Sometimes appear a lil blue Feels like I have sinus pressure sometimes Straining, can hurt my head or feel dizzy and/or slight pressure in head/face. Tired, even in the morning. My biggest issue is my eyes, well and the dizziness and spontaneous headaches. Had every test out there I think. If my Chiari Zero IS causing problems, they are mild in comparison to those blogs I have read by others. So Im not sure. I do have an appt with a dizzy doctor in Chicago on Aug 2nd. I live in Oregon, so going a ways to see him. Two other things. Not sure if this is important or relavent but... I got in a car accident in 1992. Hit my head, was unconcious. 9 staples in the back of my head. Right side. And I was born without a hipsocket, bicuspid aortic valve and 2 hernias. Soooo it seems like I was born with 3mm LLT. I was born a mess. Thank you for listening. I just feel that this "Zero" can actually be creating some problems for me. The symptoms listed fit me pretty well. But when I read about other people it doesn.t. Thanks. K |
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07-04-2012, 03:50 PM | #2 | |||
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Junior Member
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Quote:
I just wanted to give some reassurance as I understand how self questioning these disorders can make us. There is much debate over the relatively new hypothesis of Chiari 0, from my understanding and research it is a very real and very debilitating disorder. My neurosurgeon stated that (which concurred with my research) the level of tonsillar descent has NO correlation on the degree of symptoms or subsequent issues such as syringomyelia (my DX), etcetera. Meaning someone with a small tonsillar descent can have more symptoms than an individual with an 11mm descent who might be asymptomatic (I know one personally). Don't give up as your perseverance could change your quality of life for the better. I have seen in my research there have been individuals who underwent the decompression for Chiari 0 and have seen improvement, it all depends on your benefit to risk ratio. I hope for you the best. Meggie |
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