Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 >> >>> >>> >>> Hi Jenna, >>> >>> I know you didn't mention the " major clinic " which is fine but I have one of those feelings that the doctor there is NOT a Chiari specialist and by this I mean, he/she doesn't deal with it daily. >>> >>> Here's what I have learned over 10 years and counting dealing with Chiari and it's related disorders; >>> >>> 1. if you are dismissed by a doctor who refuses to listen or read research either by you or your referring physician - RUN, don't walk out of the office and do NOT go back because I've found their ego is getting in the way of their learning more. >>> 2. you know your body best and know when something seems wrong and when you do not mesh with the program the doctor is pursuing. >>> 3. do your own homework and keep a log of symptoms, call for your records of all scans, tests and medical issues you have ever had done. . . regardless of what you think it relates too! >>> 4. find someone you trust to help you advocate BECAUSE it's exhausting! Sometimes, this is hard because ppl even closest loved ones just want us fixed and better. >>> 5. Research, educate and make yourself aware of who is out there for Chiari and it's related disorders and where you can get to for an accurate diagnosis because we have too much to miss NOT to! >>> >>> I know it hurts when you are turned away only to feel terrible some more; especially when you have one doctor trying to tell another doctor what he/she thinks in order to help you. But please don't give up! Help is out there. Unfortunately, it takes time, patience, research, education and awareness. And some doctors will never jump on the bandwagon. >>> >>> Please know we care on this support board and will listen. Maybe you can find a Chiari specialist in the doctor's list from this group. >>> Take care, >>> >>> Decompressed (2002), Detethered (2006), Low Vit D (2011), >>> EDS, Osteoporosis, Probable Increased spinal pressure and Instability >>> >>> >>> >>> >>>> >>>> >>>> >>>> I have had headaches some times for days and or weeks at a time. This has >>>> gone on for over 35 years of my 41 year life. My mother suffered from >>>> headaches from the time I could remember until the time that she passed away >>>> at the age of 50 from an enlarged aortic root which turned into an aneurism. >>>> >>>> >>>> >>>> I went to a major area clinic a year ago and they did a MRI. They said that >>>> there was no visible herniation of the brainstem or the " tonsils " . >>>> Therefore there is no possibility of Chiari Malformation. Case Closed. No >>>> recommendations on how to deal with the daily migraines. >>>> >>>> >>>> >>>> This last week, my Primary care physician sent me back there saying " on >>>> paper this woman has 95% of the symptoms of Chiari " From the Chiari One >>>> websites symptom list of the aprox 63 symptoms listed, I have 52 of them. >>>> Dr A got really concerned when I told him that if I laid with my head on >>>> one side and then flipped over, I could hear fluid gurgling to the other >>>> side of my head. And that the pressure from the side I was laying on would >>>> change to the side I had changed to. And that I have " ice pick stabbing >>>> pain " in different parts of my head. >>>> >>>> >>>> >>>> So I see a different Doctor at the same clinic as a year ago, this past >>>> week, and he wants an MRA done, and for me to go to a 3 week pain Clinic. >>>> But he immeadiately put his foot down and said " you don't have Chiari " He >>>> never read the letter of referral from my physician outlining all of my >>>> issues with and with out a headache. The only thing this doc picked out of >>>> the letter was that during the worst part of my headaches I have clear fluid >>>> dripping from my nose if I tip my head forward. Or out my ear if I sleep on >>>> my side for more than 30 minutes. He said I have a " dura leak " >>>> >>>> >>>> >>>> I am so angry and frustrated at this point. I didn't even bother mentioning >>>> that my top 2 cervical vertebra never stay in place and if I can get them >>>> adjusted during a headache it makes the headache better. >>>> >>>> >>>> >>>> Jenna in MN >>>> >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 Very well said. Totally agree! Cortney Quote Link to comment Share on other sites More sharing options...
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