CM1-Newbie so many questions
 

I have recently been diagnosed after two long months of specialists, tests, and being told its all in my head with Chiari Malformation 1. I am scheduled for decompression surgery next week, after 1 day of learning of my diagnosis. I do not know my herniation number, but the surgeon stated it is fairly severe and we needed to schedule asap.

After my entire life of living as a clutzy, sickly child, it is wonderful to know all these years, it has not been me, but the CM1 that has caused this. I am looking for any advice for after surgery, what made you most comfortable, is there anything your support caregivers could do to help with the recovery process etc.

I have been experiencing burning sensations (neck & back), headaches, muscle weakness (left side), eye drooping, balance issues, motor skill reduction, just to list a few. Looking forward to communicating with anyone who has or has had CM1 to better understand this debilitating disease

Thanks for your help, I am hopeful this surgery will take care of the majority of my symptoms~~

chiari
 

hey there. my name is stephanie/andriss and i was dx of chiari on 9/17/10
and i have yet to see my doctor. i scheduled an appt on 10/29 but he had to cancel and yet to reschedule. my numbers are 5mm, and i am worried just like you. together maybe we can do our journey to the unknown, because i never knew about this, never heard of this until i got it. i live in denver colorado, and i have a doctor by the name of john oro, who happens to be the finest in this field, and has a chiari center in aurora which is about 15 minutes from my home.

Hi there...I had my decompression 4 years ago, and it was the best decision I ever made. Although I was not experiencing all of the symptoms that you are (my primary symptom was the typical Chiari headache--explosive pain during straining or exertion), I was miserable and the surgery made a world of difference in my daily life. My best advice for the surgery itself may seem silly, but it made it much easier for me: go into the procedure with a positive attitude. I was almost excited to be having surgery, so I wasn't at all scared, and I came through with flying colors, and my family was calm and less worried, too. I was in the hospital for 4 days, then spent the next several weeks at my mom's (since I live alone on the 3rd floor, and they don't want you to climb steps).

The biggest thing my mom did for me was just be there. Again, a simple thing, but true. She stayed close during those first couple of weeks, and did small things for me while I rested and got readjusted to being upright. You can't lift things or clean or do any housework, so she would scoop the kitty litter and make the meals and do the laundry (it was in the basement). When I walked outside, she walked with me to make sure I did it, and to call 911 if I keeled over :winky: (I didn't). She also conspired with me to go on a short shopping trip at the end of the first week when I was feeling just too good, even though I shouldn't have. :D

Oh, and since I couldn't drive, and I had a number of bad days those first couple of weeks, she was very good about running out and getting medicine and a new heating pad for me. Moms are so great!

DianeElisabeth

Don't wait for the dr. to reschedule. You have to be very assertive and not take no for an answer. I learned that the hard way 3 years ago. Diagnosed w/ 12mm herniation and was on bed rest for months waiting for the dr.s to sort everything out. No one can stand up for you like you.

The decompression surgery is no joke. It was a very difficult recovery for me, I was in a great deal of pain but tended to over-do my activity because I was so eager to be 'normal' again. Expect to lay low for many weeks and follow your doctors orders. I wish I had.