For the past three years I've dealt with chronic fatigue, pain, burning, tingling, and numbness. My doctor referred me to a neurologist to rule out MS. I had a brain MRI a week and a half ago and went for my follow yesterday. The doctor said the MRI was unremarkable other than showing a 8mm protrusion of the cerebellum consist with chiari malformation. At first he said that since 8mm is really small this probably wasn't the cause of my symptoms and did some additional tests for carpal tunnel and pinched nerves. Those tests came back okay so that seemed to concern him. He checked my reflexes and said the response was stronger than he'd like to see so he ordered an MRI of the c-spine to get a better idea of how bad the CM was. The brain MRI showed no syrinx.
I guess my main questions are could this be the cause of my symptoms? From what I'm researching it seems that it explains most of my symptoms. I'm in a rural area and I'm pretty sure my doctor doesn't see many if any of these cases. What kind of restrictions am I looking at? I've always had trouble with post-exertional malaise so is exercise safe? Is there anything I can do that would make this better or worse? I know that I obviously have had this condition my whole life but knowing it makes me feel so vulnerable. I feel like I need to be in a bubble! I've already been struggling at work due to fatigue, pain, and numbness in my hands and feet. My boss is less than a month away from having a baby and my workload is going to be substantially increased. I was worried before due to just struggling through each day. Now dealing with this new diagnoses is just too overwhelming!
Sorry to be rambling and asking so much! Before yesterday afternoon this condition was barely on my radar. I thought it was only diagnosed in children.
I am in a rural area but not as rural as some if that makes sense. However as Susan has said there are quite a few opinions and varying points of view out there. try not to be discouraged when you read some of the negative ones. If you are feeling bad or just need somewhere to well come here. We all have been dealing with this some of us more than others. The people here are great, we listen and help when we can.
Being in a rural area, and I just realizing where you are at, been through that area many times when I was living in north and south Carolina. Anyhow enough rambling, there are a couple of groups one is Virginia Chiarians and the other is north carolina chiarians. you can find both on the left side of the page under groups. You may have to click view all to see them. THe reason why I mention them is where you are at these groups may have information about doctors that are close to you, for example you might find a good NS at UNC Greensboro NC or in Roanoke, VA which would be better than driving to where I am in Pittsburgh, Pa (actually about a hour north).
A very important things is no matter where you go, always get a copy of the testing report or a copy of the office notes to give your PCP. This will help him.
As to 8mm herniation, size does not matter and if you can get a full MRI of your back if you are worried about syrnix. I have a syrnix at c6/c7 - t2/t3 and it is growing longer.
Also as Susan has said, Chiari effects all differently, as do the meds and outcomes of the surgery.
Good luck on your journey and remember we are all here for you. If you need give a holler. Mike
Thanks for the help Susan and Michael! I will check out those groups! I'm still waiting for authorization to get another MRI so I'm trying not to worry in the meantime. I will definitely be drilling my neurologist at my next appointment and perhaps ask if he can refer me to a specialist. I'm learning so many things I deal with are related to this disease! Also it seems my "sinus" headaches aren't sinus after all! I'm really worried that if symptoms get any worse I won't be able to keep up with my job. I'm already struggling!