My daughters having brain surgery

doorsjam
doorsjam Posts: 39
edited October 2007 in All Encompassing Trip
I have posted on here a couple of times about one of my twin girls struggle with Tuberous Sclerosis.

We got the call today that she is a surgical candidate.

The epileptologists secretary called me at 9a this morning to tell me that Cassidy was being presented at the surgical committee today.

Dr. Lee called me at 2p to tell me that he is very optimistic that they can improve the quality of her life via brain resection/epilepsy surgery.

I cried. I cant tell you what a weight lifting off my chest is. Its like they are finally doing something other than trying different drug combos.

They still have exactly pinpointed the area that is causing the seizures. They know its the left posterior lobe which is where the motor strip is located. So when they do the grid placement she will actually have almost her whole left side of her brain gridded to see if they can find it more specifically. They said her case is a bit unusual for a TS kid because there is not a tuber near the area of brain where the seizures are coming from.

Dr. Lee said it was a very diffuse area and his concerns are that there is so much activity that if they do not do surgery that permanent damage may occur that will effect her motor skills.

As scary as the thought of my baby having brain surgery is this is very good news. Now I just have a wait until we hear from the neurosurgeon for the date.
www.caringbridge.org/visit/cassidyconway

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Comments

  • mookie9999
    mookie9999 Posts: 4,677
    Positve vibes and thoughts headed your way! Best of luck to you and your family!
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  • pixie-jess
    pixie-jess Posts: 11
    hope every thing goes well, its bound to be very stressful for you at the minute. chin up.
    When I'm good I'm very, very good but when I'm bad I'm better.
  • Cateeto
    Cateeto Posts: 377
    It's always amazing what medical technology can do for a life. I wish you all the best and I'll be sending some good vibes your way :)
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  • small town beck
    small town beck Posts: 6,691
    I am not familiar with the past postings in regards to this but I am certainly sending good vibes your way.
  • Allie
    Allie Posts: 2,908
    That is good news. I wish you and your family and your daughter the best of luck with the surgery.
    "...like a word misplaced, nothing said, what a waste.."
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  • josevolution
    josevolution Posts: 31,801
    yeah i wish nothing but great vibes towards you're loved daughter will defently say a prayer for her and you're family ........... good vibes good vibes good vibes good vibes good vibes good vibes >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
    jesus greets me looks just like me ....
  • PaperPlates
    PaperPlates Posts: 1,745
    Thoughts are with your little one, and good vibes have been sent. :)
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  • stonesgstring
    stonesgstring Posts: 4,613
    Sending good vibes you and your family's way. I'm sure we are all hoping that things turn out just right for you guys :)
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  • drtyfrnk29
    drtyfrnk29 Posts: 846
    Definitely the good vibes going out to you. I hope everything works out.
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  • PJaddicted
    PJaddicted Posts: 1,432
    Prayers, good vibes and LOVE coming your way.

    oxc
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  • TrixieCat
    TrixieCat Posts: 5,756
    my heart and prayers go out to you and your child....
    Cause I'm broken when I'm lonesome
    And I don't feel right when you're gone away
  • wolfbear
    wolfbear Posts: 3,965
    Wow, sorry about what you must be going through, I can't even imagine. I'm sending good wishes your way. Hope all is successful! :)
    "I'd rather be with an animal." "Those that can be trusted can change their mind." "The in between is mine." "If I don't lose control, explore and not explode, a preternatural other plane with the power to maintain." "Yeh this is living." "Life is what you make it."
  • emily18
    emily18 Posts: 489
    ohh thats great!!! i hope it all goes successfully! :)
  • Brain of J.Lo
    Brain of J.Lo Posts: 3,259
    doorsjam wrote:
    I have posted on here a couple of times about one of my twin girls struggle with Tuberous Sclerosis.

    We got the call today that she is a surgical candidate.

    The epileptologists secretary called me at 9a this morning to tell me that Cassidy was being presented at the surgical committee today.

    Dr. Lee called me at 2p to tell me that he is very optimistic that they can improve the quality of her life via brain resection/epilepsy surgery.

    I cried. I cant tell you what a weight lifting off my chest is. Its like they are finally doing something other than trying different drug combos.

    They still have exactly pinpointed the area that is causing the seizures. They know its the left posterior lobe which is where the motor strip is located. So when they do the grid placement she will actually have almost her whole left side of her brain gridded to see if they can find it more specifically. They said her case is a bit unusual for a TS kid because there is not a tuber near the area of brain where the seizures are coming from.

    Dr. Lee said it was a very diffuse area and his concerns are that there is so much activity that if they do not do surgery that permanent damage may occur that will effect her motor skills.

    As scary as the thought of my baby having brain surgery is this is very good news. Now I just have a wait until we hear from the neurosurgeon for the date.

    I hope everything goes ok for you guys, and I'll be thinking of her. I can't imagine the mix of emotions you must be going through right now. Good luck to you. :)
  • stylo17
    stylo17 Posts: 1,001
    goodluck, prayers are with you and your family. KEEP US UPDATED
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  • Delivered_Wings
    Delivered_Wings Posts: 123
    Sending love and happy thoughts your way.
    Be Sound...
  • PJPixie
    PJPixie Posts: 3,026
    Kids are so strong and amazing!! And as a parent, you'll be surprised at what you can go thru for your child. I'm praying for you, your daughter and whole family. Yes, please keep us posted!! And BE STRONG thru this.
    The best use of Life is Love.
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    The best time to Love is Now.


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  • markymark550
    markymark550 Columbia, SC Posts: 5,224
    The best of luck to your daughter when she has the operation. I hope that the doctor's can pinpoint the exact cause and allow her to have a better life after the surgery. Sending good vibes out to you and your family.
  • tybird
    tybird Posts: 17,388
    Good luck........and I hope that all are well.
    All the world will be your enemy, Prince with a thousand enemies, and whenever they catch you, they will kill you. But first they must catch you, digger, listener, runner, prince with the swift warning. Be cunning and full of tricks and your people shall never be destroyed.
  • Steve Dunne
    Steve Dunne Posts: 4,965
    Good Luck!!!!!!!!!!
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