Chiari Malformation Patient

Hello my name is Dawn M. I have Chiari's malformation I was diagnosed with it in july 2011. I under went lower back surgery for theather cord release, spinal canal clean out, removal of fatty tissue and removal of bone. I went back to the Dr. 6 weeks ago and I now need to have Brian/Neck surgery for the chiari's. the left lobe of my brain is dropping down into the spinal canal. I have horrible headaches that are dibilitating, Leg pain, Grandmal seizures and sever bk pain and neck pain all day long. I am scared to under go this surgery. I have had 1 brain surgery already in 2004 to remove the avm that they found during an accident. Thank you for haveing this sight.

It sound like you’ve already been through so much. There is pain as there is with any surgery. They will keep you comfortable and you’ll receive extra special care. Try not to be scared. This is the surgery that will help relieve the pressure on your brain and ease the daily headaches. Everyone is different. It’ll be rough on the 3rd day after surgery but the pain gets better. It’s mostly neck pain because they have to cut through the neck muscles do move your neck as much as possible. The more you move it the quicker the soreness will go away. Have someone massage the sides of your incision and your neck muscles. Ice packs help. Hang in there and good luck!

I am 4 weeks and 1 day post-op and for me the decompression surgery has been well worth it! I am already feeling soooo much better then I have in the past 3 years! I was also very scared to go through the surgery, but my quality of life was terrible without it, and I didn't want to live my life like I had been. I had all of the symptoms that you listed minus the seizures but with a few added. I still have a few of my symptoms, but they are gradually minimizing as I have read that is common. I can honestly say that if I had to make the choice again to have the surgery or not, I would do it in a second. The results are different for everyone, this is just how things are going for me, but I hope it helps to hear that it can work : ) Good luck with everything!


P.S. I agree with Tonya about day 3 being the worst day, and it get's better after that.

TY the closer it gets the more scared I become. I have no pain tolorance it takes me a good half hour to and hour before I can totally walk like a normal human being. I am so glad that this sight is here it is helping me to cope. It is hard because none of my friends know what I go thru all day I have to use a walker to get around outside. If I add this sight to fb not all my friends will see everything right. are u 2 on FB if so I would love to become friends with you. Thank You for your support