Arnold-Chiari Malformation Support Group

I have not had my surgery yet, but what I can tell you I heard from someone else. They were saying that a lot of people on these sites are the ones that are having problems so you see a lot of negative things. The good stories have moved on with their lives because they had a good outcome. I have heard some good things too though. Hopefully we will be another few that can add some good outcomes to the list.

Thanks for the heads up! I hope to be a positive outcome and share it with everyone. People need to see the good too not just the bad.

Hi Meg, welcome to the group. So sorry to hear of your diagnosis (dx). Looks like you have some cuties in your arms there! It's sure hard to be the mommy you want to be when you are having headaches and other symptoms, I'd imagine. My only son is all grown up.

I have not had the surgery. Others here can reply to that, I hope. There ARE good outcomes from the surgery and julie is right, on the "boards," we tend to only hear the bad stories. It's hard to focus on the positive, tho, when you go thru surgeries and still have complications and compression sx.

The best thing I can say is try to find a very experienced Chiari surgeon before having the surgeon. Do not go to a NSG who only does a CM surgery or two a year. Find a true. fulltime expert! It's so important. Perhaps we can help you find someone in your region. Take it all slow, you've only been dx'd for two weeks. Do all your research and put out feelers about doctors and find the best doctor you can find and afford. You might have to travel some distance. I had to go 3000 miles.

just some thoughts
hugs
here4ya

Hi there, I had surgery in June and am doing great. Read my journal, I wrote details about my surgery experience. I was terrified too .The first few days after are the hardest but they go by fast and you are on lots of meds so you don't really remember it all and the next week or so is very uncomfortable but if you have had kids, you can handle it! :)

At this point surgery is a ways out. I currently have a crappy neuro so I have to find someone else. No one in this region will be coming near me! I want to (assuming I can get the referal) have it done in NY at the Chiari Inst. There are no competent NS's here let alone any other type of surgeons!

As for the kiddos, I've had two c-sections so I would imagine its in the same family as having all your insides moved and jiggled and put back and then being told to get up and walk 24 hours later! The ladybug (Addy) is adopted so she was an easy labor (hehe). My two were 10.4lbs to term and 8.8lbs 4 weeks early.

Hi, I am 10 weeks post-op and think my surgery was successful. However, there is still some pain that is controllable with Ibuprofen. My other symptoms have resolved for now. Feel free to read my journal for more information. Good Luck to you.