Hey everyone!!! I am 25 years old and was just diagnosed with CM type 1 on Wednesday after an MRI from my neurologist trying to figure out the cause of these excruciating short headaches, constant fatigue, dizzy spells, and short term blurriness in my right eye. He told me I had a chiari malformation, kinda sorta explained what it was, mentioned sending me to a neurosurgeon if he could ‘find one that wouldn’t just brush it off as nothing’ and go from there. He put me on topomax in the meantime, saying it probably wouldn’t help, but he couldn’t say for sure at this point that the CM was the culprit. I’m now confused more than ever. After doing some research, all of my symptoms on my little list that I’ve been carrying around with me from dr to dr for a year now makes sense with chiari. So I’m not sure why he seems to think it would be anything else. I didn’t know to ask how much of a herniation I had and he didn’t say, so I have no idea on that part. I really am clueless on this all!!! All I know is that it’s really scary to have this diagnosis, but at the same time, it’s nice to finally know that I’m not crazy and my husband and family know that I’m not just making all of it up. I’ve felt so bad for so long and I don’t mention it nearly as often as I am sick, but I know they had all started to wonder how anyone could be feeling that bad all the time without having any true outward signs. It’s been nice reading posts from others who feel this way! So, I just wanted to introduce myself, tell you about my story, and let you know that I’ll be back with lots of questions!!!
I’m glad you shared! One of the benefits of this support group is finding out that you are not alone. I can relate to the whole suffering in silence, we look normal from the outside so nobody would know how painful this is. And after years of being in pain it just starts to feel silly to continue to complain about it. I know how it feels to be doubted by a loved one (my husband used to think that if I just simply exercised more my problems would go away!) On a positive note- I’m glad your neurologist didn’t brush off your chiari diagnosis, unfortunately many chiari people have experienced that from doc after doc. Further, your neurologist is right to get you to a surgeon who will also take your diagnosis seriously. The key in finding a surgeon is to look for one who SPECIALIZES in chiari! There is a list of member recommended neurosurgeons on this sight, listed by state. That could be a good starting point for you. Don’t be afraid to do your own research on surgeons, as you may do a better job finding a surgeon than your neurologist can. Please keep in mind that, yes, many things can cause a headache that are not chiari related, but since you definately have chiari that should NOT be ignored. There is imaging that can be done to further evaluate your unique chiari situation and check for cerebrospinal fluid restriction (cine MRI) that can be ordered by a neurosurgeon.
Please ask as many questions as you have and we’ll do our best to help you.
Thank you, Jenn. I go back in Aug for an MRI of my c-spine and a follow up with my neurologist.
Im 26 and was diagnosed in April. My doctor was a little more on the ball with things but just google images of chiari malformation amd then you should have a disc the imaging place gave you. Pop that thing into the computer and check it out. Thats what i did. Mine was 2.5 cm long. My decompression surgery was 12 days ago. I went through 4 neurosurgeons before I found the perfect one. I had my surgery done at Duke in NC but I live in Conway SC. If you’re close to NC try checking out Dr. Peter Grossi. He does Chiari 1s. You can start your own search and when you find one you’d like an appt with call your doctors office to send a referral. Thats what I did. You have to take charge. Dont leave it in the hands of someone who is unsure or makes you feel stupid!