How will it start to effect my life, what are things i can and cant do?
I would like to know the same thing.
Samantha,
I believe how it will effect your life varies on many things. These things depend upon where you are on your journey with Chiari. Viewing things and seeing that you are in the testing/discussing surgery phase leaves alot of unknowns. My NS (Neurosurgeon) placed in like this : the rule of thirds; 1/3 will get better, 1/3 will stay the same, and 1/3 will get worse. Some of this depends on your NS's ability and the other depends on what you do during the recovery period and after.
Take for example some members got better after surgery and were able to resume a normal life with a few restrictions like no riding roller coasters or other activities the could apply pressure to the decompressed area.
Other members here did not get better or worse where some could be contemplating a second surgery or may have accepted having an altered life.
Finally, and this is where I believe I am at, those who got worse. Yes it can be a taboo subject or it can be made a positive choice with will you let Chiari define you or will you make another choice.
The last two scenarios are very dependent on the individual, like I said I feel I belong in the worse class however it does not stop me from looking to others for help and support. Lately (and sometimes it seems like always) I have been having bad to very bad days but when I think about it what is causing problems for me now is not related to CM as much as I would like to blame it. There are days I play with all 3 of my kids and have a great time doing it. Does it effect me, yes, but will I be able to get this time back with my kids NO. So I am choosing to enjoy as much time as I can and as a result my kids are adapting themselves to what we do. My oldest 2 do this by their own choice. My youngest (20 months) just goes with the flow like many afternoons she has a nap buddy on a very warm mattress. She sleeps on on me and we both get a good 2 - 3 hour nap other times we sit and roll a ball on the table.
So largely many things are up to you as an individual and how much/how far you want to go. I would recommend reading the spoon theory (link here: http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/). and go from there.
I hope this helps. If you have any questions please feel free to ask me or anyone else that is what we are hear for helping and supporting each other.
This is all so overwhelming for me, ive already have had 12 surgeries because im hearing impaired and once we thought i was finally done i got told i had chiari, in the last two months its progressed, i have majority of the symtoms and i feel like i cant do anything anymore because of the pain. Today i reached my breaking point and i just didnt want to deal with another life changing health problem. Im so glad i found this support group, its very overwhelming but its helping me have more of an understanding. Thank you.
Surgery helps a lot. The problem is getting a Neurosurgeon to truly understand Chiari.Do your research. The Wisconsin Chiari Center is the best place in the world. People come from from all over the country and world. Check out the website. Dr. Heffez is wonderful. Even after surgery it takes a a full two years or more to fully recover. You are still a bit limited on things, but not as bad as before the surgery. They also have this place called The Kathy House. They make you you stay in town until staples are removed. The Kathy house is there to help with expenses. You have to have a family member stay with you, as ther are no nursing facilities in house. All the food is provided. You make your own with what is there and someday food is brought and prepared for the house. You pay what you can, we paid $50 a day. They picked me up from the hospital and brought me to the house because I had no one yet in
Wisconsin, my daughter was on her way up. I only live 1 and a half hours away. I was lucky. Just check out the website, he gives a nice presentation. I healed fast.
We are looking at more options, i dont believe that one can be, i live in Utah. Right now im a waitress and unsure if its making it worst or what i can do to help ease the pain.
Waitressing is only harming it more. Chiari is your brain stem. Have you done research on Chiari to find out just what is all involved? It is your brain stem sliding down your spinal cord and becoming impinged. Which causes many numerological disorders. On an MRI mine said it was only 5mm, but once he go in there it was a lot worse. I also suffer from a rare blood disorder, and have to be on blood thinners the rest of my life, which means before, during and after surgery, I had to have two shots of Lovenox in my stomach, and man they hurt, and I had severe neck problems. So he did the the decompression, put the plate in, and put screw in my neck 2-6 at the same time. Normally they never would have combined a surgery like that but due to my blood condition, and he did have me on the the table with a scaple in his hand. So I ended up with like 28 staples, and looking like Frankenstein from the back. The brain surgery healed way quicker than the spine surgery, I had a bit of a time with that. You shouldn't be lifting, and carrying anything but your purse. Not even your children if you have any. It can be harmful and dangerous for you. Find a real good Nuerologist that understands Chiari, and if he doesn't fire him and find another until you find one that make you feel safe. Don't forget to just look up The Wisconsin Chiari Center. It is very insightful. Best of luck, and God Blessings surround you.
Thats what my mri scan showed, and i have read something’s on it… but my family isnt taking it to seriously so its hard on me to not do things i cannot do. Thank for the imformation.
I waitress for 5 years and my symptoms were at their worst. It puts pressure on all the right spots. As so as you can find another type of work before you cant work any more. When I stop waitressing my headaches got less, but now I am stuck with terrible shoulder pain from doing it for so many years.
Samantha said:
We are looking at more options, i dont believe that one can be, i live in Utah. Right now im a waitress and unsure if its making it worst or what i can do to help ease the pain.
What kind of job would be better?
Maybe a job that you can sit. I struggle with pain, nausea, and fatigue, but currently am still able to function how I need to at work and home, its just more exhausting than it used to be. Be careful to not participate in activities than can worsen your condition as listed above, but please continue to live your life. Putting too many limitation on what you cant do, can cause severe depression which makes things worse, for me at least. Hang in there, We are here for you. This condition is hard for our families to understand because we dont look sick, sometimes they forget and expect us to function at our highest level, which we cant always do. Listen to your body, rest when you need to, exercise when you are up to it. Thats the best I can say. Have a great day :)
Kristy,
thank you at this point im feeling like its already taking over and its just begun. That helps a lot im trying to continue doing things its just much harder.
what about driving
just wanted to know how it effect anyone
Sometimes its hard to drive because i have severe pain in my right side. But most days the pain isnt to bad and i can drive for short periods.
Then you can't drive until those bouts are over. I had the surgery, it truly helps.