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3 weeks since my surgery

It has been 3 weeks since my surgery. I wanted to share my story to help myself cope. Talking to others that understand really helps because I am still very scared, I will start off with the fact that I am very blessed that I regained my right leg, arm and throat. I was almost in a wheelchair full time. I did have have very difficult surgery that took almost 5 hours due to complications (blood pressure, stop breathing, and many other problems) I have complete fluid blockage and the surgery is VERY worth all the pain because I can feel and walk again. I am stll having major pain in my head and neck. Those sharp pain are crazy. I live in Arkansas and the cold makes the pain worse. My fear is learning that my life will always be different. I have also been having knots form in my neck and on the back left side of my head that hurt so bad I can't lay on it. I use a neck pillow sideways so nothing touches that spot. I have called my doctor 3 times this week due to the pain and to maybe get a MRI but he has been so busy his nurse told me to go to the E.R. and they have NO clue what Chiari, so I take my pamphlet everywhere I go incase of an emergency. I love my doctor but the communication is a problem. I guess that is one thing that scares me. Will this be forever? I also have been starting to get the tingling, pain in my arm again, already. What does that mean? I have been taking it easy, but even bathing is a chore. Am I normal? I was approved for disability the week of my surgery, but my brain does'nt know how to handle that either. I have worked since I was sixteen and I don't know how to deal. I feel really really sad sometimes with all these changes. I am scared to have to have more work done and my brain does not know how to process it anymore. Other than pain my BIG problem is I had ALOT of memory problems before my surgery and now it is like my memories I do have dont feel like my memories. My family will talk about things in the past and sometimes things will trigger parts of those memories. My mom doesnt like me being alone due to my servere weakest on my right side, but I have trouble with going back and forth. I fear things I never feared before (like a small child) I don't like change. My doctor says brain is healing and catching up. I catch myself crying for no reason or somthing will trigger it and it takes my brain awhile to understand why. Am I crazy or what???? I know this takes time and God and my family are with me 100%, but i know they cannot  truley understand everything. My main fear are my children please pray I did not pass this to them. I will be making appointments for them monday to check and see. No matter what I go through I would rather it be me and spare them. My heart goes out to all of you that have this and the parents with children that have this. I have only started learning about all of this for the past 5 months. Thank you for listening!! May God Bless!!!!!!
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Avatar universal
I'm sorry you are having such a hard time! You are in my prayers!

I'm from Arkansas also! What part of AR are you from and who is your NS? He sounds a lot like mine... Always busy! I'm close to Little Rock and I see Dr Timothy Burson
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

  This can be a very complex surgery since it involves the nerves, and they can take up to 2 yrs to fully heal.....so, take ur time and allow urself to heal.

As linnielou mentioned it is normal to have symptoms and pains post op and at 3 weeks it can be surgical pains....and as u get to 3 months it can be the nerves becoming active again....

  Unless u have vomiting and pains that r worse than b4 surgery then u should be ok...if it is worse call ur Dr or go to the ER.

   "selma"
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1306714 tn?1327257080
I know exactly how you are feeling.  Believe it or not it is normal on how you are feeling right now.  It is very flustrating.  I had 4 surgeries in 4 months,but I am 1 yr post op.  I hate to say this to you,  but another supporter on here told me " Having Chairi is a life chainging thing"  It has been very hard for me also.  I started working when I was sixteen too and I worked until I was 48 and had my surgery I couldn't live life the way I was living it, but now I relate to what you are going through and I have been in those step's.  Take one day at a time.  I know how hard it is.  I thought I'll get this surgery, get kixed, then go back to work.  God had different plans for me and apparently for you also.  I had to quite my job due to it being so physical.  I have also applied for disability. Congrat's on gettinng your's.  I know how you feel about getting Soc Sec too.  It was hard for me to go appy, but as my dr said and my lawyer.  I put into Soc Sec all these year's that I have worked 33.  Now I'm just asking for some of it  back.  It's been a struggle for me also excepting this kind of life.  I loved to garden, ALOT, ride motorcycles, travel, crochet, sew.  You name it Ive tried it, Now I can't hardly do any thing.  I have learned to a little each day.  As for you please take it as easy as possi le.  You are still in the process of healing,  please don't lift anything or strain.  You don't want to end up back in the hospital.  As far as the lump's in the back of your head.  I would say this is normal.  If it is in your neck and it feel's like a lump.  I have that same problem.  My doctor tell's me it is a muscle that they have to move in order to get to where they need to get your surgery done.  So that muscle is in pain, and it will take a while to know any better than that.  Put a light heat on it.  It seem's to help me, I have also put ice on it at time's too.  My heart goes out to you and I'm crying just writing this to you because it is a hard journey for us to go on.  Your not alone though.  We are heare for you to listen.  I can't say tomorrow will get better for you.  As I don't know what will be with me.  Selma has given me hope though with telling me that she felt a tremendous difference in 2 years than in one.  We all have to have pateince.  Something I didn't have before surger.  I have learn now or should say still dealing and excepting we need to take one day at a time.  God will stengthen us, and show us where our next step's are.  First you have to focus on healing.  I know how hard that is when your in pain all the time, but it does get better.  You body is in shock right now.  You just need to relax and take time.  We weren't made in a day, so we won't heal in a day neither.  Just hard to deal with I know.  We appreciate you.  I'm so thankful to hear you have a loving and surpportive family.  That helps a lot.  I also know what you mean by not passing this on to your children.  My daughter is 33 and she has TMJ and she complain's of headaches all the time.  I worry about this all the time.  Even though they say it's not heretitary.  MMM  I wonder.  Take it easy today, and always know your not alone.  
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