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Severely disabled & needs surgery

her momhher mom Posts: 2
edited 02/14/2015 - 8:28 PM in Back Surgery and Neck Surgery
Hi I'm new to this forum. My 22 year old severely disabled daughter has a C4 C5 injury, narrowing of the spine, misshapen bone and a bugling disk. She has been seen by a pediatric neurosurgeon. A team of doctors at the hospital have recommended her for surgery to remove the movement by fusing it together. She is suppose to be in a hard cervical collar for 8 weeks (due to her lack of cognitive ability she has no understanding that movement could hurt her after surgery so 8 weeks of a collar has been recommended). My daughter is non verbal and she has A LOT of anxiety. I'm very concerned about how she is going to handle the lack of mobility in her neck and also she sleeps on her stomach which I know she won't be able to do. Those of you that have been through this, please tell me what is the pain from surgery like and how awful is it wearing the hard plastic type of collar? Thank you so much, I appreciate any feedback I can get.
Life is a beach, and the tide always goes back out.
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Comments

  • LizLiz Posts: 9,755
    welcome to spine-health

    use that above hyperlink to help you get started with spine-health and navigate through the system.

    if there are any questions, you can always post them here, send liz or myself a private message or contact ron rdilauro@veritashealth.com

    https://www.spine-health.com/treatment/back-surgery/acdf-anterior-cervical-discectomy-and-fusion

    Liz, 

    Veritas-Health Forum Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • jlrfryejjlrfrye ohioPosts: 1,111
    Believe it or not you eventually learn to live with it and it is not that big of a pain in the butt after a week or so. I also was a stomach sleeper but trust me she will not want to sleep on her stomach. Talk to her Phy about maybe a sedative to make her more comfortable during the recovery. There is also the option of a hospital bed that raises the head which will make laying on the stomach almost impossible. My surgeon told me when I can take the collar no more to sit against a wall and remove the collar with my head against the wall, ask him if this is a possibility for her. Good luck and may the surgery and recovery be a easy one for her.
    Susan
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  • Hello,

    I'm sorry to hear that your daughter has to go through this. I'm sure having special needs will make it even more difficult for her and your family.

    The worst part of the whole surgery for me was swallowing. It took months before I could actually swallow normal. Three weeks out I developed a clicking sound in my throat that was audible to people. Freaked me out, but was told it was normal. I would make sure she has soft foods for awhile.

    The actual neck pain wasn't too bad. My chest was sore and bruised where they had me strapped into position for the surgery.

    I hope everything goes well. Please update us on how your daughter is doing.
  • The collar wasn't that bad, it was actually scary to start taking it off and learning to sleep without the support. I am a side sleeper, and it took a good 6 weeks or more til I could sleep on my side again, without the collar.
    Is she on anxiety meds? I would bet they'll either increase those, or add another drug in. My doc actually put me and his other patients on lorazepam (Ativan - a relative of valium) because it relaxes muscles, and you too. You just have to be careful of addiction issues with some drugs.
    With my skilled surgeon, I didn't think the surgery itself was *that* painful, it's the recovery from presurgical issues that's a bummer for me (I have cervical myelopathy). Is she painful now? Neurologic signs? (what triggered her to get the surgery)
    Good luck!

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • TWynnB said:
    The collar wasn't that bad, it was actually scary to start taking it off and learning to sleep without the support. I am a side sleeper, and it took a good 6 weeks or more til I could sleep on my side again, without the collar.
    Is she on anxiety meds? I would bet they'll either increase those, or add another drug in. My doc actually put me and his other patients on lorazepam (Ativan - a relative of valium) because it relaxes muscles, and you too. You just have to be careful of addiction issues with some drugs.
    With my skilled surgeon, I didn't think the surgery itself was *that* painful, it's the recovery from presurgical issues that's a bummer for me (I have cervical myelopathy). Is she painful now? Neurologic signs? (what triggered her to get the surgery) Good luck!
    She is on Abilify but I expect she will need something else as well. You are all confirming what I was already thinking. We only found out there was something wrong because she was with me in my minivan and we were rear ended on Halloween (she was sitting in her wheelchair and we were hit by a truck going about 40mph). A few weeks after the accident she wouldn't turn her head for several days and then another time she was holding her head weird. After a personal injury claims rep drove me crazy trying to get me to settle, we decided we should take her to see the orthopedic doctor to be checked out (my daughter is non verbal). The orthopedic doc sent us to a neurosurgeon. He said she has narrowing of the spine, vertebrae that have slid out of place, and a bulging disk. This is so scarey because she has so many other issues and I feel so bad because she won't understand. I most concerned about her neck becoming weak. Was that an issue for any of you? Thank you so much for your feedback, it's very helpful.

    Life is a beach, and the tide always goes back out.
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  • Are you concerned her neck becoming weak with surgery, or without? The collar does make your neck weak, and when I started taking it off, my neck muscles were burning pretty good. Initially, I actually did a schedule of the collar off (1/2 the first day, 1/2 hr twice day, then increased it, pretty rapidly) to make sure I didn't do it too quick and pay.
    Can you get a second opinion? After reading a lot on the neck surgeries, they don't seem to recommend it unless there's issues from it - neuro issues, not necessarily pain issues.
    Good luck, you're in a tough spot.

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • I have a daughter with a moderate intellectual disability who has scoliosis & wears a Boston brace (a lovely hard plastic brace from chest to hips) 23hours a day & has done so for the last 2 1/2 years. When we first got the brace she wasn't impressed & kept trying to remove it (she too has limited cognitive ability), but now brings it to me to be put on, now that we're allowed to let her have more time out of it in hot weather. We had to gradually build the time up. Can you get the cervical collar before surgery & get her used to it beforehand?

    I hope it all goes as smoothly as it can for you.

    Veronica
    Microdiscectomy L5S1 January 2014
    Microdiscectomy L5S1 March 2014
    Fusion L5S1 11th August 2014
  • SpineAZSpineAZ WiscPosts: 1,084
    edited 02/18/2015 - 12:15 PM
    Use of a post op collar doesn't cause muscle weakness. It's used as a "guard", so the neck muscles are still used. For her the most comprehensive surgery may be best.
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • I agree with TWynn and suggest getting a second opinion.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
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