Surviving...

As of late some of my symptoms have been coming back. I attribute this to jogging two weeks ago as soon after that the funny feeling in my head returned. My left arm is starting to feel pretty useless and the motor control in my left hand feels like it is going away. I will be calling my NS this morning to schedule an appointment. Just a couple of weeks ago I was telling my NS that I was 95% of what I was pre-surgery.

I am almost one year post-op and I know that surgery is not a cure but I was hopeful that I would be able to go a long time without symptoms returning. I am not emotionally prepared to deal with what this setback may mean. I was planning a future, a college education (at 35 y/o) and a family and ironically a healthy life style. I am sure most Chiarians have been down this road at one time or another. I’ve lost hope and I’m desperately searching for a silver lining and something to hang on to. While being diagnosed and during the time leading up to surgery my Wife was (and still is) my rock. She knows I’m not feeling well again but she doesn’t know how scared I am. I can only imagine being as scared as I am that she is probably really scared too.

After some background I guess my questions are how does everyone cope with Chiari and the transition to a new life with limitations? How does your spouse handle the day to day challenges of the myriad of symptoms chiari presents with? How long does it take your heart to heal? Right now that hurts more than anything.

[selmaS]

Hi...I am passed my 1 yr post op annv...and I find I have to appraoch things diff...like I would never attempt to jog....I can tell as it bothered me prior to surgery that it would set things off.
Surgery was not a cure....and we can as b4 surgery have triggers...

Plus, I was told it can take up to 2 yrs to fully heal....so, there is a list of things to avoid...I try to avoid all on the list...we have to adjust to the fact we  r chiarians and may not be able to do  things as b4.

Chiari is life altering....and there seem to be stages we all go thru...and to mourn who we were is a biggy....

My DH thank God...has been with me the whole way and understands my limitations to the point that I want to try somethings and he doesn't want me to.....I have found new things to occupy my time...painting...never knew what I could do with it and I am finding a new side of me I didn't know b4 chiari.....when God closes one door, he opens a window...we just have to look to see which window it is : )

"selma"

[Sweetpea32]

I am coming up on my year anniversary for my first surgery in September. I started walking again about a month ago and had to back down on the distance that I go. I had a flare up and now I am feeling pretty good to "slowly"start back up walking again. I have found that since my surgery I am dealing and accepting things day to day. I was one that I could clean houses on the side for extra money, but I am not able to even clean my own house on a regular basis. I have a very supportive spouse, I thank god every day for him.
Just reading your last question about how long it takes for your heart to heal, almost brought tears to my eyes!! Because no one really understands how much things change for us with this condition. I take things day to day, even hour to hour at times. I like what you said Selma about when one door closes another one opens. We just have to look at things through a kalidescope: We can see in may ways now just have to look for it! Hope that all made sense, a little cloudy today!