After reading the radiology report from my MRI, it states I have mild Chiari 1 Malformation with an 8 mm left and a 5 mm right pegged shaped tonsil. How is it that an abnormality of the brain is considered mild; especially when your brain is somewhere it shouldn't be?
I find this so interesting that people with a zero herniation can have just as many problems as a person with a “8mm” herniation. My neurologist prescribed me Gabapentin (Neurontin) but only because she diagnosed me with Fibromyalgia and she believed that I would benefit greatly from it. That very same appointment she (my neurologist) also ordered an MRI with and without contrast of my brain. I went in 2 days later and had the MRI. I requested a copy of the radiology report and I actually received it in the mail within 2 days of having the MRI. That is actually when I found out I had Chiari 1 Malformation. I had never heard of it and I decided to do my research. After reading article after article I broke down crying because I knew that this is what had been causing my problems all of these years and that I finally had an answer to why I was having headaches, vision, hearing, balance problems, numbness in my left arm and leg, and feeling the way I had felt for so many years. I haven’t seen my neurologist since I had the MRI but I’m scheduled to see her on the 17th, when she returns from her vacation.
Back to the Gabapentin part. My neurologist prescribed it to me because she believed I had Fibromyalgia, (and I don’t know if it is possible to have Chiari and Fibromyalgia) but within two days of taking the Gabapentin I began to have SEVERE head tremors, my head would shake so bad I looked like a bobble head doll. The shaking became so bad I would feel sick to my stomach almost like motion sick from my head shaking so bad. I then began to have mild seizures where I would look like I was in a trans. My neurologist nurse pulled me off of the medication immediately and as of now I’m on NOTHING! No pain medication nothing. Has your doctor said anything about having surgery? I wonder what my neurologist is going to say. Thanks for sharing your story with me Abby, you are the first Chiarian I have met.
Rebekah
Abby said:
Hay Girl, that is a great question. Most doctors and radiologist don’t have it, so therefore, they try to tell us that it is not the Chiari. Size does not matter. You can have major problems with 0 Chiari. I get that too, my friend and the best way, is be prepared when you go to your doctor this time with KNOWLEDGE to come back at them. I have major symptoms and I have a 5 mm herniation. I am learning how to manage it and somedays are really bad. I have migraines, balance problems, vertigo, ear and eye problems, when stressed it is major. I cannot lift, I can not get over exerted. When I have those days, I just have to do what my dr. says and give it up and go lay down till it passes. I do take gabapentin for my pain and sleep. Will tell me more later, got to get hubby some food. God Bless you and glad you are here.
hi rebekah
im sorry you have come to meet us on these terms, its not the nicest thing to deal with, but in the end we do get there, i also asked for copies of mine mri reports, mine showed MS as well as chiari ihave 8mm tounsil, with no overcrowding, and no syrinx, im due for more next week, my surgeon is not happy that ive been left and had no followup for two years, apart NL who told me there was nothing wrong and get antidepressants and pain killers, but then keep talking that a lumber puncture would be good, well never got that, sometimes the pills that you go on can make you alot worse, i find its best to listen to your body and hear what it needs, it can take awhile to be able to do this, good luck with your appointment and jope it goes well, ploease keep us posted, and if we can help in anyway, we are here for you, we understand it, live it, breath it,
take care and welcome
joelene
ohh abby
i tell people if they ask that my brain is falling out, because i have alot of knowledge and its running out of room. anyway your right most drs dont know what it is, i always find it funny,
personal joke to myself sometimes
no thankyou abby
you are a blessing to me also, without our talks, i would of lost my mind
laughter is the best medicine, if we didnt we proberly would of been locked up by now