I've never used a site like this so I don't even know if this is the right place to say hey. I have recently been diagnosed with Arnold-Chiaris Type 1 Malformation. I have to say that I am scared to death. I'm a single mom with three kids who depend on me for everything and I don't know what to expect. I am looking for people who have been through something like this or who are currently going through it. I'm pretty sure I have to have surgery but I don't see the neurosurgeon until tomorrow. I'm really scared. My father had Multiple Sclerosis and I was 10 when he was diagnosed. It got really bad really fast and we watched him slowly waste away for 16 years before God finally gave him relief. My biggest fear is that my kids will say that about me one day. They are smart, funny, crazy kids and they don't deserve to have to go through that. Because I have no idea what to expect, I am very anxious and intimidated by this situation. Does anyone have any good advice for someone who can't afford to be sick in any way? My symptoms are pretty bad right now although, thank God, I don't have any paralysis yet. But I can't pick up my kids or cuddle up in my boyfriends arms for comfort. Everything I do gives me a headache. I'm really scared and looking for friends. I hope I can find some on this site. Thanks and can't wait to meet some of you.
Reese

Hi, I see you've found the other forums and are off to a good start, but I just wanted to welcome you to the community. You'll find lots of support here, not just on the "medical" forums but the fun ones also, if you just want to chat with someone. There is almost always somebody home here!

Hi, and WELCOME


So sorry you're stricken with that. I don't know about that, personally. There will be many others on the NeuroTalk communities that will embrace you and exchange their stories.

Hang is there.

Reese, I first wanted to say welcome to Neuro Talk…I noticed you found the Arnold Chiari Malformation and Syringomyelia Forum. I went to Medline Plus to learn a little more about this condition. It must be hard to come to terms with what this might do to your children. I talked to my daughter who is 23 about what is going one with you and she said to tell her that her kids will be ok.

I wanted to just in short tell you I was born with Spina Bifida Occulta. I had three back surgeries in a two year period of time when my son and daughter were 3 and 5 years old. They learned how to take care of me because my husband was what I called my fair weather friend…he was around as long as I wasn’t in pain. I had my fourth surgery when they were both in high school and the fifth one six months ago. My daughter said she learned so much back when she was younger about how to take care of herself when needed which has helped her all her life. They both grew through my pain.

One thing I did was to involve them in everything. This past surgery my daughter was scared that I would die during surgery…she was scared to death. I took her with me to my pre-surgery exam so she could ask the doctor any questions she wanted to. She actually knew the PA so that helped her to relax. After the visit she was ok. She hates hospitals but came to see me every day.

I know there are a lot of questions of the unknown variety going on in your head. Make a list and take it to your doc appointment. I also know how hard it must have been watching your Dad suffer with his MS, my husband, aka, the Olhipie was diagnosed over 23 years ago…you take care and know you and your little family are in my prayers…sorry about going on…

If you need a listening ear...I'm here...hope all goes well with you appointment...

Hi Reese, and welcome to NeuroTalk! This is such a great place with lots of very nice and caring people.

I don't know much about what you're going through. I'm here because of MS. But, please feel free to PM me if you ever feel like just talking to someone.

welcome to neurotalk ... there are lots of friendly and supportive people here so jump right in and start posting ... should you need help, don't hesitate to ask someone ... we are here to help

I just recently was diagnosed with chiari one as well, but I've had migraines all my life. I've started having other symptoms now, as well. It sounds like yours are more severe, but from what I've learned about the decompression surgery, it sounds like a pretty good option. I talked to a neurophysiologist locally and he said as least technically it's not super intricate--of course, you want the best possible surgeon you can get, and it is serious. There are a couple (that I know of ) of Chiari Institutes, one in Great Neck New York (Long Island) and one in Milwaukee, WI. I Know the New York Institute takes a few months to get in, but I'm sure either place would be great.

I have three boys. I'm single, too! (newly) You're not alone! I'm new to this, too. New to Chiari and new to writing on a site like this. I'd be really interested in hearing how you're doing. I'm not sure what I'm going to do, either. I get mixed messages from people. The neurosurgeon said I was a good candidate for the surgery, then my neurologist said I should get a second opinion! what I want to know is, if I've had headaches all my life, and I'm starting to show other symptoms as well, and likely they'll get worse, what would the benefit be of waiting for surgery? Any thoughts? The idea of getting rid of my headaches sounds blissful.
good luck.