big day tomorrow. my first appointment with a neurosurgeon whos a chiari specialist in the hope that i can get closer to getting my life back.
am I mad that i kind of hope i get the diagnosis? i think its because my symptoms have been affecting my life so dramatically for years with no diagnosis, and therefore no useful treatment or cure. the thought that it can have a name rather having to explain my symptoms to anyone who asks, but mainly that there is a chance of treatment, and a chance it will work!
sometimes in the past weeks i worry that ive imagined some of the symptoms to make it fit, but i only ever heard about chiari a month ago. some things like the odd bit of numbness or shooting pains over the years ive just shrugged off as being normal (cos theyre not severe enough to be anything other than a temporary pain).
4 times in my life ive had "attacks" where ive had lots of symptoms together, lasting from 4 months to 18 months.ive missed exams, lost jobs, completely changed my career, twice.
I was looking at your profile to see if you had any MRI's that showed a herniation....I went through quickly ..and couldn't find out if you had any MRI's yet..MRI is the test used to see if there is a Arnold Chiari 1 Malformation. Once that is seen on an MRI..HOPEFULLY, the doc will order a CINE MRI to see how the cerebral spinal fluid is flowing....Mine, for example was NOT blocked, completely,,,,it was 'diminished'.
A full spine MRI is wonderful to get..to rule out a syrinx(fluid filled cyst on the spine)....hopefully you either had one or will get one soon.
In my opinion, you are far from crazy mad..YOU WANT ANSWERS!!!! If you have answers, a diagnosis, you can then get a plan of action set into place, right? It is this limbo you are in, suffer, not knowing what the heck is going on with you, that is so darn frustrating...am I right? That is how I felt too!!!!
Can I make a suggestion? Can you bring someone with you to this appt? I also think an extra set of ears is the best...also, jot down ALL symptoms you are having, even if they do not seem like a 'typical Chiari symptom".
hi, ive had quite a few MRI scans, but none looking for chiari, barely going low enough to see the spine. on my first post ive done a full history and scan pics (make a cup of tea first as its a bit of an essay).
i will be going with my wife as usual, as she fills in when my speech and /or memory starts to fail. just had a call from the hospital, had the horrible feeling they were going to cancel, but they were just advising theyve received the scans from last month so the neurosurgeon will have them infront of him!
I think it's normal when you know something is wrong to wish for a diagnosis. At first you of course hope everything is fine but when the symptoms won't leave then a negative test can be just as disheartening as a positive one. It's easier to fight the devil you know as they say!
Everyone has given you excellent advice. I just want you to know going into your appointment Chiari Surgery is just a treatment. There is not a cure for Chiari. Many people have even been told by their doctors they should be cured and that is not true. We do have some incredible success stories. Please ask your Dr. what he thinks your prognosis will be.
I felt a weight off my shoulders when diagnosed, I wasn't crazy and it literally was all in my head. But I think my expectations as to my close family and friends was too much. To them it's something they've never heard of, it's another excuse and there's no way all your symptoms can be caused by one thing. So don't let them get to you!!
Hi Martin! I echo what you are saying there! I feel the same way - hoping for a diagnosis so I can have some closure as to what's been happening to me most of my life. How old are you? I'm 53 and have been suffering for years. I'm hoping to see a neuro in 2013. I live in Canada. It's takes a good six months to see a neuro or more. Some days I feel like I"m losing my mind....