I will be 4 weeks post-op tomorrow and all my symptoms from before surgery have returned (slowly.) My NS had told me previous to surgery that the damage that was done, was done. We were just preventing it from getting worse. She was optimistic though, that a lot of my symptoms would go away. I know that my brain is still healing and I am a bit impatient, but I am ready to be feeling better, not worse. I am sleeping more because the fatigue has worsened, I am getting the awful headaches again (now with even more piercing pain in my head, left eye and ear), the memory and cognitive issues are worse than ever. I just feel like the surgery was a waste of time. Even though I know that it needed to be done to correct the CSF flow and the syrinx. It is very frustrating because I feel like I am complaining all the time. I am sick of the negativity that seems to be oozing out of my pores. I have so many things to be thankful for, but the agony of feeling like this is getting to me. I am one that tries very hard to look on the bright side, but it is hard when you come to the realization that...this is my life. Am I going to feel stupid all my life? I was ready to go back to school and finish my degree, but I can't even read more than a page at a time. Comprehension is almost impossible at times. I have difficulty with too much stimulation. I get overloaded and end up getting tired and confused. Am I going to be able to even drive or hold a decent job? I had so many things planned before I got sick and now it seems like those plans have to change. I am very angry about that! I was happy with my life and now I feel as if I have to start over with limitations. I have applied for disability and I know that it is going to be a long process, but at this point, I am not sure what else to do. The cognitive and memory issues have gotten so bad that I won't even cook, go to the store or do "normal " things without help. If I try...it is either a disaster or takes me ten times longer to complete a task. Does anyone have any of the same issues? My NS said that they removed several adhesions. She looked sad when she said it and I can still see the look on her face. It is sickening to me that this is my life!!!
My heart is breaking for you right now and as I read this aloud to my daughter (12 days post op), I cried. I can’t remember correctly but I feel like you were the one who left a comment to me, for my daughter, about you being in school. Medical right? Either way I feel horrible for you! Last night we tried to have a family game night but my daughter couldn’t do the simple thinking required in order to play. I’m really worried now. Then I come to see what’s going on here and I came across your post. Please don’t get discouraged! Maybe this is a temporary thing. I’ll pray for you. You are defiantly not alone and this site is a true blessing. Never give up baby girl! You will be in my thoughts today! And I don’t know you but I love you! You can rant to me whenever you feel like it.
I just realized that it was Katrina that I had this discussion with a while back. She has the exact same issues as you and my daughter, so you are NOT the only one. I can’t tell you how many times my daughter has cried to me because she “feels stupid”. I always tell her you are not stupid, you have a condition that’s causing these symptoms. It never really helps when I tell her that and it breaks my heart. She’s really struggling to graduate HS this year. With that episode that happened lastnight when she couldn’t even play a simple family game, I am truly worried. My fingers are crossed that this is a temporary thing for both of you. If you look up Katrina S., she has a great story to tell. She’s still in school working on her masters degree and it’s a HUGE struggle for her but she’s not giving up! Neither should you. You 2 have a lot in common so please have a talk with her.
I read your post and know exactly how you feel. Tuesday will be 2 wks post op for me and it is such a sloooowwww recovery and hasn't been easy at all. I have always been an inpatient person and I try and work on my patience. But it is so frustrating that I have this Chiari monster and the realization that I have to live with it for the rest of my life just makes me angry and frustrated and question "Why me?" Before my sx's became severe, back in 2008 I had graduated from college with an Assistant's degree in Medical Assistant was working my dream job-at a Ped's office and life was great. Symptoms became pretty bad the last part of 2008 and by July of 2010 I could no longer work. I felt stupid, I had trouble spelling, concentrating, telling someone something and then 1-2 hours telling them the same thing over again and no recollection that I had told them the first time. It was like my life was swept right out from under me.
I applied for disability and they denied me. Said even though my sx's were serious they weren't serious enough for me to work. Yeah right. live in my body for one day. lol So I have a disability representative and I am appealing. would really rather work though.
I will keep you in my prayers and pray that both of our recoveries change for the better. I love you even though I don't know you, we are both in the same boat and know exactly what each other feels.
Love and Gentle hugs,