Just wondered how many of you were sure Chiari was the problem before you were diagnosed. Also, I know the typical range of time before diagnosis but, please tell me how long from symptoms/beginning of dr visits to diagnosis. How many different dr's did you see before finding the right one?
i have been struggling for 3 yrs; 10-15 dr's and still dont have an answer or the right dr.
I never knew I had CM1 until I had to have emergency surgery. I had symptoms all my life. I got really ill in 2001 & saw 52 Specialists & had emergency CM & C Spine Surgeries on 9/26/2005. I also have a Medical background & education.
wow...52?! That must have been very frustrating and scary. My measily little 10-15 doesn't sound so bad!! :) Although it is unfortunate that every time I have an appt I have to travel 2 hrs to get there and 2hrs to get home. Usually all for nothing or to be sent home crying and frustrated again. I hope you are doing better now. God Bless!
i dint know what i had i just knew something was wrong
ill tell you if i get diagnosed by a chiari man in a weeks time
I knew something was wrong I just didn't know what. I had heard of chiari but never really studied it. I assumed since you were born with it you'd be diagnosed and treated as a child, it didn't occur to me that I could have it. Really symptoms have been there a long time. I was always having headaches in school but the doctor told my mom they were psychosomatic. I always got fatigued really easily too. Then about 4 years ago my immune system just shut down. I got repeated bouts of shingles, the flu, sinus/ear infections, ect. At that point I had started having tingling and numbness in my arms and legs. That was written off as being a B12 deficiency caused by celiac disease. Then when my B12 got back to normal and it continued doctors said it was nerve damage from shingles. At that point I started trying new doctors. I saw 4 GPs, a rhumatologist, an endocrinologist, immunologist, orthopaedist, and finally two NL. All the doctors kept saying that I probably had early stages of MS or that I have RA or lupus that wasn't showing up in my bloodwork. They wrote it off as chronic fatigue syndrome. Meanwhile things got worse. Dizziness, balance issues, lightheadedness that almost caused me to blackout while driving and the numbness had spread to my face. The worst doctors were the NLs. The first found the chiari but said it didn't cause symptoms and when I asked for a consult to an NS he was so rude I left in tears. The second was arrogant and also refused to refer me to an NS. He said that chiari 1 should never be treated surgically. I finally got fed up and sent my info to the Mayfield Chiari Center where someone finally helped me! So it took me 4 1/2 years from the time I started having severe symptoms until I had my surgery.
I'm a bit of a 'backwards' case. I've had symptoms since birth (36 years ago) and my parents spent years w/ different doctors trying to figure out what was wrong w/ me w/ no success. I had trouble eating, failure to thrive, developmental delays... basically all of it. Eventually I guess they gave up trying to figure it out and it was just 'me.'
Then at 15 (almost 16, just barely over 20 years ago) I started getting migraine status headaches and got an MRI. That's when I was 'officially' diagnosed, but no one explained to me or my mom what was wrong or that anything could be done about it. All we knew was that 'something' was wrong w/ my brain.
I actually knew nothing about the real diagnosis until this year. When my symptoms started worsening to the point that I couldn't function well I asked my mom if she had any of my old medical records. She found some, including the old MRI report, and that's where my research and knowledge started.
it seems that I have lucked out as far as amount of docs I have had to see- I have been dealing with symptoms for almost ten years- without knowing the cause- always chalked up to different things- until July of this year when my world spun out of control- which led me to an mri beginning of Aug. which is when I was diagnosed- I was told by the neurologist to go home and not worry about it, that had nothing to do with my symptoms- my primary physician said she wasn't aware of cm at all and didn't agree with the neurologist and sent me to the mayo clinic in Rochester MN for a second opinion and then I was scheduled for surgery a month later- so as far as from diagnosed to surgery it was quite quick- the longest time was taken up by waiting to get into the mayo for the first appt (which was Oct 2st) after that the time flew by till I had surgery Nov 2 of this year- the surgeon at the mayo took on look at my mri and said that without a doubt surgery would relieve the debilitating pain- quite different than the neurologist telling me to go home and not worry about it-
seems I have to thank god my doc wasn't happy with the neurologist telling me not to worry about it- and backed me up when I wanted a second opinion and sent me to the mayo clinic for it- my heart goes out to all here that have gone through years of docs tests etc and still getting no where-
I never knew i had Chiari. I'm 26 now, and i had been getting headaches almost everyday since about grade school. I went to the doctor about the headaches, they did an MRI and never found anything, so after that whenever i had a headache i didn't really think anything of it because nothing was seen on the MRI. Finally this past june i had gotten a headache worse then any i ever had before. Went to the doctor again, had another MRI done, and this time found out it was Chiari, i had no idea what it was, nor had i ever even heard of it before, i went to a chiari specialist at a university hospital and learned that all of the symptoms i had (headaches, inbalance, electric like impulses going up and down my arm) were part of chiari. And now its been almost 6 months since i had the surgery, and not having a headache everyday is like im living a normal life, and i dont have to keep taking pain killers.
I found out after I turned 26 because I was a victim of Domestic Violence back in February and had to have an MRI to find out what was causing my blurry vision from being kicked, anyways, long story short, if he wouldnt have done all that, I wouldnt have known anything about Chiari Malformation, every situation has its up and downs, but I do have an answer for the headaches Ive had since I was about 15. . I saw my regular physician, NS, and NL, they all said I was okay, no surgery needed, and put me on some medicines that are suppose to help with sleep and the headaches.
I had never even head of it until i was diagnosed with it.
I didn't even know what Chiari was untill the doctor told me and I looked it up on the internet.
Mamamari,
I just knew something was wrong and wouldn't give up. It was scary & I was insulted by a ENT. It been a long Journey, but I am very thankful to be able to watch my daughter grow up. I understand frustration & tears.
mamamari said:
wow...52?! That must have been very frustrating and scary. My measily little 10-15 doesn't sound so bad!! :) Although it is unfortunate that every time I have an appt I have to travel 2 hrs to get there and 2hrs to get home. Usually all for nothing or to be sent home crying and frustrated again. I hope you are doing better now. God Bless!