IM DONE WITH LIFE THIS IS TOO PAINFUL..I WENT TO GET MY F/U MRI 90 DAYS SINCE SURGERY WITH TREMENDOUS AMOUNTS OF SYMTOMS AND OFCOURSE THE ANXIETY KICKED IN W PALPITATIONS LEAVING BE BREATHLESS &SHORT OF BREATH CROSTOPHOBIC TO TOP IT OFF:( TERRIBLE SYMTOMOS ONCE AGAIN HAVE LOST BLADDER CONTROL:(..ALL EXTREMETIES ARE TINGLY NUMB MOST OF TIME I HAVE FALLE TWICE BECUASE IM SO DIZZY WALKING IN ZIGZAGS..:( NS SOUNDS LIKE HE DID ALLHE COULD ANOTHER RESTLESS NIGHT IS HERE AND I FEEL WORSE THAN I EVER HAVE MY HUSBAND IS GETING IRRITATED WITH ME MY KIDS OMG I FEEL LIKE IM SUCH A HORRIBLE NOTHER I CANT PLAY WITH THEM IM ALWAYS COMPLAINING THERE LOUD WHEN THERE LAUGHING IT HURTS MY HEAD HORRIBLE HUH???? I FEEL LIKE THE END OF ME IS APPROACHING IF CHIARI DOESNT BRING ME DOWN THIS LONELINESS FEELING AND DEPRESSION WILL !!:( SORRY IF I WASTED ANYONE TIME I NEED SOMEONE WHO UNDERSTANDS ME EVERYONE INCLUDING ER DR'S LOOK AT ME LIKE IM CRAZY..I MIGHT JUST START LOOKING INTO THAT
I am so sorry you are having such a hard time. The Crisis # is 1-800-273-TALK. Please call them if you need
someone to talk to.
We all understand where you are coming from Chiari is not good in any way & misunderstood by many.
Have you told your NS how bad your symptoms are? ER Dr's are very discouraging for people with CM. Please
message me your information and I will find you a NS in your area who can help you. I really do understand.
More than you know. You are not alone. I promise. Please Let us know how you are today. do you have a
good PCP or any other Dr that could help you get through this tough time?
Maria I agree with all of them . I have been where you are. Please let us know how we can help you. We understand what you are going through. Chiari does not have you...you have Chiari. I went through the same thing. My hubby was so frustrated too ..but he was not frustrated with me......it was with my condition. It took a great support group and church and friends to dig me out of that place. I will pray for you. Hugs ..Liz.
I am so, so, so sorry. You are not crazy, what you need is some understanding. This affliction affects so many parts of our lives, actually ALL parts. It so unfair. I’m sooooo sorry you are still having symptoms after surgery, that’s enough dissappointment right there for any person to reach their limit, plus you are having severe symptoms too. Correct me if I am wrong, but it sounds to me like your surgeon threw up his hands yesterday… What did he say about your MRI? Also, give us some background - what did your surgeon do for you surgery wise? Was this your first surgery? I’m asking because it helps us to see avenues/ options that you have to go forward
and make no mistake, 99.99% sure you have options. If your surgeon says he doesn’t know what to do next then we throw him in the proverbial trash! and find a better one! How DARE he take away your hope!! I have narry a violent tendency towards another person, but right now I could shake my finger in his face!
I know this is hard, the disappointment my seem too much, but you can do it.
Another big stressor here is that you have little ones. I don’t have kids (my husband and I are waiting to see what happens with my condition before we make that decision) so I can’t relate -I’m sure others can chime in here about their experience with that. What I can say is most likely you are being really hard on yourself when it comes to your kids. Lets just do a quick recap on I suspect your life has been like: sever pain, falling, other severe symptoms. Motherhood. Wife. Major brain surgery. Recovering from major brain surgery. Husband doesn’t “get it” as least part of the time. Surgeon who is not helping you. That’s A LOT, and you have been doing this everyday for what I suspect is a long time. You are AMAZING!
I’m glad you reached out. I do understand how hard this is, and hope you feel some comfort in that you are not alone. I wish I could give you a HUGE HUG. I’m saying prayers for you since I read your post and will be all day.
Stay strong Maria,