Arnold-Chiari Malformation Support Group

Good morning, Mark from Boston here. I have been to Olathe,I was there about nine years ago for training at Grunfos pumps for about a week. The folks were great and enjoyed my time and got to go to Cabelas not far from you while we were there. I found out I had Chiari about two years ago and only after I had eight spine surgeries for spinal stenosis,bad disks and a list of other problems!! Doctors don't always have a good grip of what we are going through because they don't know enough about Chiari. Living in Boston where they say we have the best hospitals in the world I was only able to find one specialist who dealt with Chiari and was able to do the surgery and follow me along my future path. You do have a very positive outlook and don't let the doctors who don't know about Chiari get you discouraged!! I go by one thing I keep in the back of my head all day(besides my Chiari)"KEEP SMILING AND KNOW ONE WILL EVER KNOW HOW MUCH PAIN YOUR REALLY IN"!!
if you want to read a bit more about me go to markfromweymouth@gather.com Keep in touch and always "KEEP SMILING"
All my best,
Mark from Boston

Joy, go for the eye test! That is a good place to start. The neuroopthamologist will look at the back of your eyes and be able to see if you have intercranial CSF pressure built up. So, your new NSG had a good plan with that one.

But, it sure does sound like she is useless, doesn't it? Perhaps, she will be open to learning and you can "use" her to get her to refer you to other specialists. Perhaps she can find a NSG who knows more about Chiari. Because she sure doesn't!

I agree with you, CM can't be cured. Surgeries sometimes have to be redone, even with the super specialists like Dr. Oro. I wish you could go back to see him. But I know how it is if you can't afford it. Is that b/c insurance will not pay for him? Because if he did the surgery, then he should be the guy for follow up, and the insurance should pay!! If it is because you can't afford a hotel and the trip, etc, perhaps your friends could hold a fundraiser for you? We have to rely upon our families and friends, all of us, healthy or not.

thanks for joining this group and introducing yourself. You did not ramble too much at all. There is no such thing here! Everyone wants to help.

I would suggest this, that you try to turn your focus outward rather than inward. Yes, you will never be able to forget the pain and suffering you are experiencing, but at some point, you will come to accept it, and perhaps learn that looking outward to where you are helping others really gives you a sense of self worth. That is what folks here are doing, looking outward out of themselves and struggling, in spite of their pain, to help others. I think you already do that in your life...but just wanted to mention that working on message boards to help others in your same situation really does help bolster your spirt.

I loved Mark's comments too. I do the same, I smile when others look at me in town while I wear my big ol' Johnson CTO vest. I don't want them to feel bad about me, or feel bad about themselves, even, or feel uncomfortable, so I smile and make a joke about it. Again, that is looking outward, not inward. Great advice Mark. I'm going to look up your website!!

Keep us posted, Joy. I don't have answers for all of your questions, but just keep posting here and looking for encouragement and support. I'm so sorry that you feel so scared!!

I am going to send you a personal message...you can look for it.

hugs
here4ya

I have different Insurance now than I did when I had the insurance, so we dont know if they will cover. We will cross that bridge when we get there. Because of the level of pain and memory loss and that do accounting I had to quit my job and am not able to work and do not have the money. And because of the economy it does not seem like any one in mine or my husbands family has money for me to get to see the surgeon in colorado. I might have found a couple orginizations that might help cover the costs of getting there but we are not sure. For now I am trying to get the surgeon to look at my file while I am here to see what he thinks and see if there is anyhting I can do aside from surgery, if he thinks it is my Chiari or if we are under the wrong tree. About two weeks ago I started loosing feeling in my feet and now I am occasionally loosing feeling in my arms. I can not drive, I can not get up and down my stairs easily. We will see what happens and go from there. One day at a time. Thank you all for your thoughts and prayers.

Mark, that link did not work. Can you let us know the right addy? It looks, from your picture, like you have had the craniocervical fusion. I'd like to read your site!

thanks
V.

I figured it out, it's

http://markfromweymouth.gather.com/

great page, Mark! Good to know more about you.

I could have written that myself. Except now they are saying I have Lupus. I don't know who or what to believe. We are not alone.