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Thread: ALIF fear...vascular surgeon required

  1. #1
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    ALIF fear...vascular surgeon required

    Hi all, surgeries are approaching....T-21 days and counting. The first one will be an ALIF from T12-S1 and we have met with the vascular surgeon. He immediately went into the ďcove your ass speechĒ about all the ways you could potentially die since your aorta and vena cava are right there. I know intellectually the risk is still really low because of his expertise, my health, etc. but itís still really scary and Iím having a hard time processing that fear without letting it consume my attempt to stay calm and positive.

    I think the scariest part is realizing that way something god forbid happens, our kids (ages 3 and 1) would have no tangible memory of me of their own. They would only know me by stories others tell and pictures.

    Anyone faced similar fears like this before their surgeries? Helpful ways to accept and cope without letting it take over?

    Thanks
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    June/July 2020 - T10-S1 Fusion with SI fixation

  2. #2
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    Jessica, It's going to be alright. These vascular surgeons are amazing these days.

    I had a friend who had a total aorta replacement done at age 69. (18 years ago) They put a garden hose in from the top of the heart, all the way down...the whole shebang and he came out ok. He was done before me so that helped some. That was a major major surgery.....Incredible.

    They have to warn you about these things, and you will sign release paperwork before you go in.

    I know this is a lot to bear..., I was running for anxiety. Go outside and yell as loud as you can. Start your heavy breathing now. In HARD, hold for a sec, exhale slowly.

    You will be given an aspirator in the hospital and you will use this at home. Breathing helps with anxiety. They made me blow on this thing often in the hospital. It's really important.

    https://www.youtube.com/watch?v=FTBuv-8nfjo

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #3
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    Prehab before surgery

    Anxiety exercise....

    When I was at work leading up to my surgeries, I was running down the block and back every 45 minutes. People would come in and I would say I have to run now. Have a seat, I will be back soon. It doesn't take long to get your heartrate up. Control your anxiety by breathing hard and increasing heartrate. Ignore the pain. Become an athlete. Have an athlete's mind, and you are going to win the race.

    You will see in the link below that this cardiopulmonary thing matters. Train to run a marathon "before" surgery. Not after. You will be walking after surgery, walking short distances often, distributing blood and nutrients into healing zones.

    Get your diet dialed in. No junk allowed. Talk to your surgeon about meds and going in clean if you can. The anesthesiologist will like that. I went in clean. No meds, no chemicals. Again, ignore the pain. Use e-mail to communicate with your surgeon's nurse or assistant. Keep e-mails short and limit questions to 3 at a time. Get your BMI right. Lose weight if you have to. Quit smoking now. Drink water all the time.

    Get a bike if you can't run. A stair stepper is also a good idea....swinging arms will also do it. Pretend your going into a boxing match and get those arms moving. Use soup cans for light weights. Go faster to increase your heart rate.

    https://www.journalacs.org/article/S...18)32073-8/pdf

    Use comedy to divert your mind. If you are laughing deeply you will notice pain drops off substantially. I am constantly joking around here for a reason.


    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
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    Oct 2019
    Location
    Washington state
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    Thank you Ed, your input always helps. I'm finding it hard to focus on regular things, especially at work. I know I have so much to do both at work and home to prepare for being out of commission for a while and I don't know if its me being scared or me wanting to avoid it but I find its hard for me to actually do those things to get ready. For instance, prepping my hospital bag and purchasing items to help me out at home...I know I need to do those things but I keep finding excuses not to. I know I need to just buckle down and do it...maybe its my subconcious way of saying, "No, no no no no" to this entire thing and not wanting to admit or come to grips that its actually happening? Who knows...its amazing how much more heavy this entire process feels when you know whats in store as compared to being a naive teen.

    If I am only taking gabapentin before surgery do you think stopping it before hand would help?

    I have cut out all soda and I am eating lean healthy meats and working on drinking a lot more water. I have a history of being anemic so that has me worried a little, maybe start a supplement?

    I guess my other questions are about the rods and hardware themselves. With hardware all the way down to the pelvis, say god forbid I fall, even after being fully fused, what is the risk of breaking hardware? What does it feel like when a rod or screw comes loose or breaks?

    Do you think people with this much metal are more sensitive to cold?
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    June/July 2020 - T10-S1 Fusion with SI fixation

  5. #5
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    reno,nevada
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    We sure turn into zombies when we set our dates....heck I even turned into a backup dancer on one of those Michael Jackson video's.... And they said I can't dance. (smiley face)

    There are a lot of emotions and feelings that affect us when we do serious surgeries....Adults probably feel more and worry more than kids but kids have this built in survival instinct, like the one you had and forgot all about. You did that. It would have been nice to have you posting years ago, we all would have been listening intently. I missed that so wonder about these things myself.

    Once you set your date, try not to question or re-justify your decision. There is a reason why you set your date. I thought, I can't go back, I waited way too long, and given the situation of our spines, things will or would only get worse. How much pain do we have to be in to justify our decisions? Its crazy what we do, and even if there is lingering pain, as long as it's better, and improves the situation, it's worth it. At the pool, it's the high dive. Scared to death climbing up that ladder and walking out. After you jump off, you realize that it was fun. Of course no surgery is fun, but you get the idea.

    On the Gab or the suppliment's, direct these questions to your surgeon. It's not often one sits down with anestheologists, people like Dr Joshi, I have a thread and some of his videos posted here. If Linda had another scoliosis conference, my questions today would involve this subject matter. Use e-mail to communicate with your surgeon. Keep it short and sweet, not too many questions. Answers will be short ones.

    Good on the soda. It's good for cleaning car batteries, that about it. That and baking soda. Soda is bad for you.

    Hardware breaks because you won't fuse. You won't break your hardware in a fall, you could crack or loosen a fusion and then the rod will break later...The first few weeks are extremely important as far as healing is concerned. If you cut your hand, you put a band aid on it and it starts the healing process. Hit your finger with a hammer, and it slows the healing process down. Just because you fall won't guarantee your rods will break. It's not the end of the world, but don't fall. I had my walker by my bed and would stand there for a few minutes to make sure I was ok to walk. You will know.
    Car accidents will break hardware. Jackie had her cervical rods break after a car accident. Its best to stay out of cars for some time. I would only get in a car to go to the doctor for a few months. Cars are dangerous. Machinery can be unforgiving.

    I don't know what it's like to have hardware break. There are members here that know....perhaps they will chime in. I have watched revision videos of pseudarthrosis.....Dr Hey has a good one.

    https://www.youtube.com/user/TheHeyClinic/videos

    People that have CNS disease are sensitive to hot and cold....and yes, over the years I am seeing or feeling this. People that take opioids can get really cold. Weaning can make you cold or hot. Hardware is generally buried pretty deep, I don't think it has any effect on hot or cold feelings. This question has been brought up here in the past. I don't think there is anything conclusive on this.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #6
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    Quote Originally Posted by JScoli91 View Post
    Do you think people with this much metal are more sensitive to cold?
    Do you mean that the metal can get colder than your body in response to outside temperature? I think that is impossible. It will be the same temperature as your body after it has been there for a little while. It can't lose heat if it is in your body.

    Linda?
    Last edited by Pooka1; 06-10-2020 at 06:53 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    Location
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    Pooka, I guess what I am saying is that I have heard people who are fused with a lot of metal say that when the seasons change or when itís always cold out they are much more sensitive to it because of their metal so they have to dress warmer than others would to compensate. Would that make sense?
    Feb 2003 - Diagnosed C (35) T (45) L (25)
    Dec 2003 - T2-T12 Fusion correcting to C (8), T (14), L (20)
    Oct 2019 - Lumbar curve progressed to 40
    Nov 2019 - Thoracic curve progressed to 31
    June/July 2020 - T10-S1 Fusion with SI fixation

  8. #8
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    Jan 2008
    Location
    NC
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    Quote Originally Posted by JScoli91 View Post
    Pooka, I guess what I am saying is that I have heard people who are fused with a lot of metal say that when the seasons change or when itís always cold out they are much more sensitive to it because of their metal so they have to dress warmer than others would to compensate. Would that make sense?
    If the metal is entirely within the body I don't understand how it can ever be colder than the body.

    Maybe Linda knows.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #9
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    916
    I am one of the people that can feel the cold through the metal. Some of my hardware can be seen just under the skin. I usually just wear extra clothes because if the metal gets too cold , I have to soak in a hot water tub until it warms. Usually I just wear an additional polar fleece vest.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  10. #10
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    May 2008
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    reno,nevada
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    Jessica, here is an old UCSF PDF "Preparing for surgery" form that Linda posted years ago.

    See attachment below

    This should help out with planning

    Ed
    Attached Files Attached Files
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  11. #11
    Join Date
    Sep 2003
    Location
    Northern California
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    Quote Originally Posted by titaniumed View Post
    Jessica, here is an old UCSF PDF "Preparing for surgery" form that Linda posted years ago.

    See attachment below

    This should help out with planning

    Ed
    For the record, I put the form on UCSF stationery, but it was actually created by myself, mostly from my own experience and tips I got on the original scoliosis forum.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  12. #12
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    May 2008
    Location
    reno,nevada
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    Yeah, I think it was on your old webpage many years ago which was a good site. I don't want this stuff to get lost.

    With your "should I have surgery test"... I took it a few times over the years and failed miserably and tipped the scales for surgery each time. The writing was on the wall.

    It took a lot for me to submit.....and there is never a good time. All the events just seemed to stack up. Every bit of information that was processed was important, a lot of it from your old web page.

    Of course I didn't bring chapstick....and the hospital didn't have any. You know how it goes. My lips bleeding were the least of it.

    Thanks for supporting us all these years Linda

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  13. #13
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,206

    Dr Hannah Straight on COVID and health.

    Here is my favorite doctor talking about COVID-19, and health. She is a local out here in Tahoe.

    https://www.youtube.com/watch?v=6kYxgCAQnws

    She mentions vitamin D and Dr Hey has also talked about vitamin D in one of his videos.

    The role of vitamin D in scoliosis patients.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6284127/


    Ed
    Last edited by titaniumed; 06-13-2020 at 10:22 PM.
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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