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Sunday, November 23, 2014

Jennifer's Progress After Chiari Surgery

I'm so sorry I haven't been able to update everyone. With all that has been going on at home and work, I just now found a little time to update everyone. I feel bad it's taken me so long. With all of the love, kindness, prayers, and well wishes from so many it made me feel bad not to update everyone until now.

Jennifer just returned to Ohio this past Tuesday for her post-op visit. Sadly, she had about 10 episodes of the "Chiari headaches". She felt a bit depressed by this, but I told her she still had a long recovery ahead of her and it will take time for the surgery to show results.

She tires easily, but she has been great about doing her therapy. It's painful for her to do the exercises, but she follows through with them as she knows it will help make her stronger and better. She let me take a picture of her head and wouldn't have minded if I shared it. I took the picture with my iPhone and cannot get it to my email. I don't know too much about the iPhone because I don't like cell phones too much and figure, why bother to learn all about it....lol. It was a gift from my daughter Jennifer and I must admit, I do like being able to test her when she is at work.

Jennifer is also experiencing some post-op blues. She is used to being an active and busy business woman and mom. Besides missing her routine of work and playing with her children, she is feeling a bit "frumpy" about her shaved head and long scar. Her sister and I are going to take her shopping when she can get out and about. We want to buy her a wig while she waits for her hair to grow out.This is something she will need to pick out.

After almost two weeks she is doing well. Of course, as a mom, I am concerned about some of the things she must be careful to remember. She is not suppose to lift or bend over. After her full recovery, she will also be limited to certain activities. She can no longer ride amusement park rides, jump on a trampoline and of course no Extreme sports of any kind. I'm looking forward to learning all that she has gone through will be worth it. In the meantime, I will go to work, get ready for the holidays, watch over my daughter's recovery and perhaps be able to squeeze in the time to do some of the crafty things we all enjoy.

Thank you everyone for the emails. Again, I apologize for not answering them, but I have read each and every one and they warmed my heart. It's nice to know there are so many thoughtful and kind people out there. Even though I've not met everyone in person; I know the hearts that have reached out to me and my family during the troubled times this year has brought to us. May God continue to  bless and keep each and every one of you. All of you a a lovely part of our family's blessings.




  

22 comments:

  1. So good to hear from you - a traumatic time for all - with all the love and positive thoughts going your way, bests, Lyn

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  2. Good news, Debbie. I've noticed you haven't been around and knew you would be very busy, but I was concerned. Thanks so much for updating us. I'll continue my prayers and know that things will only get better and better. Happy Thanksgiving to all of you.

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  3. continued love and healing light!

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  4. Debbie, thank you for the update on your daughter's surgery and recovery. Your family and especially Jennifer have been in my thoughts and prayers!

    Marda

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  5. It is good to read the update on Jennifer. I cannot imagine what she is going through or what it will be like to change her lifestyle to stay healthy after full recovery. It is good that Jennifer, you, and (I bet) your whole family, are strong. My thoughts and prayers are with you and do not apologize for taking care of your family first. We all would.

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  6. I also suffer from daily head pain and I am on pills to control it. I wish her a quick recovery and what is difficult now will surely be forgotten when she is back to healthy. God bless

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  7. My thoughts and prayers are with you and your family. Recovering from major surgery is no picnic, but time and PT will pay off in the future....speaking from experience here - LOL!
    Hugs,
    Jan

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  8. Psalms 27:14
    Wait on the LORD: be of good courage, and he shall strengthen your heart: wait, I say, on the LORD.
    Sometime we get going so fast in our lives, that when we slow down, or are made to slow down, we look at that as something that is a bad thing.
    Jen has a wonderful opportunity here to wait upon the Lord.
    To reflect, journal, to pray, to get strong and carry on her message that not only she knows, but has lived through and can tell others.
    The things she can't do now are really nothing compared to what the surgery will allow her to do and be.
    A better mom, a patient mom, a empathetic and sympathetic moter, friend, wife and daughter.
    No roller coaster? LOL, life IS one big roller coaster.
    Not able to jump on a trampoline? But able to jump at the chance to help someone that has gone through hardships.
    Extreme sports, well, I think that is just God saying "Duh, we shouldn't be being done anyway" ;)
    The one thing that stands out the most in this sweet motherly post, is when you mention, routine.
    How often do we take the time to "stop" doing, coming and going? Making the most wonderful part of who we are, and giving that to others, our children, and be with them, read with them and read to them, hold them, laugh with them and let it stop being routine, and making every week, every day, every moment special.
    Jennifer has a moment in time to step back, and be the person and parent she wants to be.
    Listening quietly to God, her mom, her children. Waiting upon God, standing still for his blessing.
    Hair is just that, hair. It will grow back. Sometimes when women have chemo, they never get their hair back.
    Some let it grow again and donate it to children that need wigs. Locks of love.
    Another oppertunity for her to be so grateful for all she has.
    Some patients, never recover long enough for their hair to grow back.
    The scar, a badge of courage for her and tho her children and to the world.
    She got that battle wound and scar, because she wants to get better,
    she wants to be better.
    And you know what I think?
    I know where Ms. Jennifer gets her courage and power from.
    You, her roll model for a mom.
    You all are being prayed for.
    Keep looking for the silver linings.
    The darker the days, the brighter the silver linings shine through.
    Blessings
    **U**
    Nance





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  9. Happy to hear she's on the road to recovery! PT is critically important for full return of function. It is so hard sometimes, but stay determined, Jennifer! It does take time. I see the injuries of returning soldiers and they give me courage to get through mine. Best wishes!

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  10. Debbie Hoping you can all relax and have a wonderful Thanksgiving together. Then take one day at a time to heal and recover. Prayers for you all.

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  11. Thank you for the update on Jennifer's recovery, Debbie. I'll keep praying for her and your family as you get through this time. I hope she continues to improve. Take care of yourself. Debbie :)

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  12. Your daughter can recover pretty quickly. I don't have a Chiari, but I have 3 Syrinx in my Spine. So I have what is called Syringomyelia, very close to what your daughter has. Most people have only one Syrinx in their spine. I have 3. In my Neck, Mid and Lower Back. I also have Arthritis and a few other conditions that don't help.

    I had my First Surgery last January. At first it seemed like I would never recover, then all of a sudden the recovery started to go faster.

    I am still in pain daily. The weather hurts (cold and rain). No more coaster rides is the worst!

    How did this happen? I don't know. I woke up one morning with a severe headache behind my head, it did not go away for 9 weeks, yes 9 weeks. It gave me tense muscles down my neck, spine and left shoulder and arm.

    3 years later they told me what was wrong. (Other than a clueless doctor) They told me I needed surgery and told me that it wont make me better, it will just stop the progression and possibly get me out of the wheelchair.

    I did out of the wheelchair, then the walker. I only use them if I go shopping or take the kids out to the amusement parks (I can watch, I love to watch them have fun)

    Well, Sorry I took up your comments section.

    But what I really wanted to say: There is a light at the end of the tunnel and in reality the tunnel really is not as long as it seems some days.

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    1. Debby, thank you for sharing your experience. I tell my daughter every day; she is getting better even though it's slow going. They didn't remove the syrinx and told her this might be needed at a later date. When I see her scar I think about how much they opened up her spine and head area. It's a scary thought. She continues to have headaches. This worries her and she begins to think all of this was for nothing. Her face is no longer numb, but her head is.

      I will read to her what you wrote. It makes me wonder if perhaps you too have Chiari. I will add you to my prayers. It sounds like you have also been through quite a lot.

      It's so very sweet of you to take the time to share this and will mean a lot to my daughter. Thank you Debby.

      Sending you a great big hug,
      Debbie

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  13. I posted a long comment to you and I am not sure if it went through. So I apoligize if you get this twice! Orginally, I came to your blog to look at your SVG and craft projects. However, I noticed your posts about your daughter having surgery for Chiari. I also had this surgery about two years ago. I have Chiari malformation due to being born with Spina Bifida. I also had a lot of symptoms and had to go to many different doctors before finally figuring out that Chiari was the cause of my symptoms. After, the surgery I was very weak and lost a lot of strength. I was also in a lot of pain for awhile after the surgery. It took me about two months to gain all of my strength and energy back and start feeling back to normal. This was also frustrating to me because I was used to being an active and independent person. However, things do get better! After, I recovered from the surgery itself, the constant headaches and neck pain I was having disappeared. I was also having vision and balance issues and vocal cord paralysis. All of that is better now as well. I didn't realize how much pain I was in before the surgery until now, since it is gone for the most part. It can be a slow recovery but, things do get better!

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    1. Lisa, I can't thank you enough for the post you made. Your first post didn't show up. I am going to make sure my daughter reads every word. She needs her spirits lifted. The other day she had a bad spell after trying to do too much. We've asked her to please be patient and let her body heal. She has been so discouraged at her "slow" progress and feels as though she is never going to feel "normal" again. Reading this will help encourage her and lift her spirits. I'm also so glad to learn what she is going through is normal and she will get better. It's a matter of time and patience. I understand how very hard it must be for her and I know it was for you, but the light is at the end of the tunnel. To know in a few more weeks she will be feeling as good as you are s an awesome thing to share. Bless you and thank you. Big hugs, Debbie

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  14. I hope my post helps and if your daughter needs someone to talk to who has been through a similar experience please let me know.

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  15. Merry Christmas and praying that 2015 is a wonderful, God filled, healing year for you and your family.....
    **U**
    Nance

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  16. Kim. Continuing to pray for you and think about you. Miss your positive attitude and creativeness. Will connect with you when you eventually get settled in.

    Hugs, Barb

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  17. I hope you are doing good from you surgery I have 2 kids that have Chiari malformation my daughter is 15 & had her surgery when she was 4 years old she lost her hearing & is developmentally delayed my son had his decompression when he was 14 he is now 17 both of my kids are doing good we have yearly check ups, good luck & wish you well -Tina

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  18. Hi I just found your blog and have been reading about you daughters condition .I too had an Arnold Chiari malformation with Syrinx which required 2 surgeries, the first to releive the malformation then the second to drain fluid from the spinal column. I was also told to refrain from many activities and eventually had to retire from my job which I found hard to accept. The good that came from all of these trials was that I became more tolerant, patient and had more time to enjoy crafting. Your daughter will improve and recover with time, she will learn to compensate for the limitations imposed by this condition and live a near to normal life again. Please tell her, to enjoy the light we must pass through the darkness, and it is never too dark when we have hope. I wish your daughter a speedy recovery and may God Bless you and your family. X


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  19. Debbie thinking of you and your daughter. We are missing you.
    Cindy Pope

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  20. I know I've visited (and learned from!) your blog before, but this is the first time I've read about your daughter. I sincerely hope all is well, as it is now over a year later. Blessings

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