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Thread: Heidi's surgery with Dr. Lenke

  1. #1
    Join Date
    Feb 2012
    Location
    NC
    Posts
    129

    Heidi's surgery with Dr. Lenke

    Ok friends,
    I thought I would start a new thread because I didn't want to take over someone else's thread! My surgery is less then a month away. It is coming up so fast! I thought 11 months would take forever to get here and now it is right around the corner. I guess I am starting to experience the what if's... sigh. Probably the reason I am up at 3 am. I think I might feel a little better after my pre op appointment on the 19th of this month. Not knowing the surgical plan is killing me! While I know, any surgery Dr. Lenke does is big stuff I am wondering if it will be T10- L4/5 or if it will be T4-L4/5 or to the sacrum or a combo of the above. I am making an educated guess that it can't be definitive until he sees my thoracic MRI (have no idea why this was not done at the same time as my consult... but anyway it wasn't) bending Xrays and so forth. I sure would like a one and done surgery...I would hate to fuse just the bottom curve and then need to go back and fuse the top. I am also worried about not fusing to the sacrum because of arthritus issues and degenerative issues that will most likely develop over time. Thank goodness, 12 more days until I have the answer to those questions.
    I lie awake at night writing farewell letters in my head to my children. My logical brain tells me I will be fine and come through this surgery but man am I causing myself all sorts of stress. Has anyone else done this? I have run out of things to do to keep busy.Just this week I have packed for my surgery, wrote a poem, read 2 novels, and ordered our Christmas cards. What are some ways that you have all releived anxieties before your surgery?
    Scheduled for surgery with Dr. Lenke Oct. 2012
    53*T 71*L
    Surgery 10/05/2012 T4-pelvis
    Correction: looks perfect! Will find out how perfect at future appointments

  2. #2
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525

    Advice from someone else on the blog

    Hi Heidi! I haven't had surgery...yet...but I read the blog all of the time to help myself get psyched up in case I do. Someone on one of the threads gave a very powerful message that I keep with me. Something like: Once you have made your decision to have surgery and you have TRUST in that surgeon, let go of all of the "what ifs". Your job now is to trust and leave everything to the surgeon that you have trusted. I hear you saying hat you want control over the situation, but the only person that really has control is your doctor. Yes, it would be great to have all of the information, but you will in time. You have a GREAT surgeon...he will take care of you!

    I agree with you that it is worrisome to think about the possibility of dying in surgery. First of all, it is EXTREMELY rare. The pain psychologist that I saw at OHSU said that people that "catastrophize" have worse outcomes than those that relax and have confidence/trust. By the way, I only scored average on catastrophizing which surprised me because I thought that I was ole doom and gloom. . So, I decided on that day and when I read the sage advice above, that that is exactly what I would do, just let go of the "what ifs" and go with it when/if I decide to go the surgery route. So, how am I going to do it? Probably call some of the folks that I have met on this blog that are positive and ask them to help me with reassurance. I have some relaxation tapes. It will be a struggle for me because I am afraid too.

    So, I hope that this helps you and you may be one of the people that I call next year when I see the surgeon again. You will be OK. I'm pulling for you.
    And there is no need to write letters....
    HUGS to you, Susan
    Last edited by susancook; 09-07-2012 at 04:11 AM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  3. #3
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    Heidi,
    I am right there with you! I have started writing letters to my children and husband just in case something goes wrong. I keep telling myself that I am excited (which I am in some ways) and keep trying to push the nerves down. At this point prayer is probably the only thing that brings me true peace. It is all in God's hands and His plan is already in place. Take comfort in that and in knowing that many of us are praying for you and your family. If you do find the trick of letting go of the "what if's" please do share.

    Tamena

  4. #4
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    Hi Heidi,

    This time is the very worst part of the whole deal. The mental torment is just almost unbearable, even for those of us who have absolute confidence in our decision and our surgeon.

    What I did that helped was I exercised like crazy every day. I swam super-human numbers of laps (about 3-3.5 miles per day, about double my "regular" workouts), I did the elliptical/cardio machines, and I lifted weights, and strangely I never felt any sore muscles from it. My husband thinks it was because I had so much excess cortisol/stress hormones to use up in my body! Probably true. I was in excellent cardiovascular condition going into surgery.

    I asked my surgeon point blank what were my chances of dying during surgery, and he told me I would not die during surgery. He said the people with higher complications had pre-existing cardiac, lung, and other medical conditions. So I felt better about that. Of course I still worried some about it, but that did help.

    Once you get your surgical plan I think you will feel a little more peace, too. Other than that, try to keep really busy, eat well, and take a prescription sleep-aid if necessary. I did for the last few weeks and it helped tremendously.

    Hang in there, and please do keep us updated.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  5. #5
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    193

    Try REIKI

    Heidi,
    The MAIN thing to fear is yourself and how your brain wanders. If you have confidence in Dr Lenke (which there is no doubt of any top surgeon as he is), then trust him.

    He has years of very great experience. He is associated with the top organizations in this field. He has the backing of Washington University which I have never heard of until my daughter was offered acceptance into a PhD program in research. She was flown to several top universities and chose WashU.

    You and I must have gone up and down those elevators in CAM, visited several floors for all kind of tests. I had to go to Barnes-Jewish for other tests and got an apptm with a concierge to tour the hospital floor. Believe me, I have been so impressed with this campus and the doctors I've met. I thought that Stanford and UCSF were the best but they are famous, older institutions, and spread out.

    Nothing will happen to you while surgery that is not easily detected and corrected without time passing. They are well equipped and Lenke has done so many of these surgeries that there would not be 'ooops' what next? How do I proceed now, let's search in the internet, get me a bandage etc.

    I trust Dr Bridwell totally as the technical operator (pilot in an airplane). They do the surgery and then the next year is up to us to suffer the pain, recover, etc. But, the mind must be positive and in the right place. I can easily be persuaded into the dark side and I had gone there in the past 3 weeks because of my surgery date being on-hold (oct 16).

    A friend who owns a restaurant is a great friend. I usually visit during off hours as she is not busy. In the past, I had been involved with helping her be more assertive, have more confidence and self esteem. So, 3 weeks ago she just sat down and ask how was my back (and do I want anything to eat or drink) and all I could do is tears down. Every question was answered with don't know... and tears.

    She has talked about Reiki many years ago and had offered but I never was too interested. I had purchase chakras bells for another friend living in Buenos Aires 20 years ago and still had no knowledge or interest.

    This time she insisted and I was so blah, my vision was that of a cloudy day, and a hard feeling in my chest = depression. She gave me a session of Reiki. That day I went home with my old self again. Next morning I was in tears again but it passes. A week later another session and did not feel any change but my attitude was pretty OK. Then, I felt better on the third quickie. But the 4th was amazing! She had another reiki master and they both worked on me. I am so myself again. Actually, I am not depressed/disappointed about my on-hold date. If it happens fine if not we will see. If Dr Bridwell insists in using BMP and my insurance does not approve the surgery... then, I will have to find someone else. But deep inside, I know it will be resolved.

    Either Reiki worked or not, it gave me back old self. It could be religion, exercise, whatever. Take care of the mind first because it is destructive to us and those around us. I have caused so much chaos in my immediate family that I am sorry and will take back control.

    Stop writing farewell letters. If you die, family and loved ones will remember how great and strong you were over the years and their lives. One letter is nothing.

    You'll be fine. Gardenia
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75° and 89° - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  6. #6
    Join Date
    Dec 2011
    Location
    Toronto
    Posts
    27
    Make a list of all the things that you want to do once you get well. This will keep you focussed during bad days post surgery
    Prepare your home for your recovery including amenities, entertainment, music etc


    Quote Originally Posted by hasteffen View Post
    Ok friends,
    I thought I would start a new thread because I didn't want to take over someone else's thread! My surgery is less then a month away. It is coming up so fast! I thought 11 months would take forever to get here and now it is right around the corner. I guess I am starting to experience the what if's... sigh. Probably the reason I am up at 3 am. I think I might feel a little better after my pre op appointment on the 19th of this month. Not knowing the surgical plan is killing me! While I know, any surgery Dr. Lenke does is big stuff I am wondering if it will be T10- L4/5 or if it will be T4-L4/5 or to the sacrum or a combo of the above. I am making an educated guess that it can't be definitive until he sees my thoracic MRI (have no idea why this was not done at the same time as my consult... but anyway it wasn't) bending Xrays and so forth. I sure would like a one and done surgery...I would hate to fuse just the bottom curve and then need to go back and fuse the top. I am also worried about not fusing to the sacrum because of arthritus issues and degenerative issues that will most likely develop over time. Thank goodness, 12 more days until I have the answer to those questions.
    I lie awake at night writing farewell letters in my head to my children. My logical brain tells me I will be fine and come through this surgery but man am I causing myself all sorts of stress. Has anyone else done this? I have run out of things to do to keep busy.Just this week I have packed for my surgery, wrote a poem, read 2 novels, and ordered our Christmas cards. What are some ways that you have all releived anxieties before your surgery?

  7. #7
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Heidi,
    I felt exactly as you prior to my surgery, BUT, felt so much better after talking to Dr. Lenke and Kelly the day of my pre-op tests. I started to become excited and focused on the fact that I was going to soon "be on the other side" and on the recovery road with a nice, straight back! You will do just fine.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  8. #8
    Join Date
    Feb 2012
    Location
    NC
    Posts
    129
    Thanks all. Today, has been a little better.
    I am hoping for a full nights rest tonight!
    Thanks for the words of encouragement, it seems like
    time is going so slow for me right now.
    @ Tamena- Will you keep the forum updated on my recovery?
    You can get updates off my face book and paste them in here?
    I went out last night with some friends and shopped a little. I bought a few comfy outfits to wear after surgery.
    Meantally, I have been really calm and confident until my date got moved up. I am sure I will get there again soon. I am usually a very positive and optimistic person, which is why my sudden thoughts were so disturbing to me.
    I scheduled a massage for Tuesday and a facial for Friday... so hopefully that will help me relax a bit! I also bought meals today to freeze for while I am in St. Louis for my family to bake/ heat up. Also a good friend set up a webpage for family and friends to bring us meals after my surgery.
    I am also turning into a major germ phob! I feel like I need to wear a mask and gloves or be quarentined to my home. I am worried about getting sick between now and Oct.5th. I am seriously considering wearing a mask on my flights for my pre op! Has anyone done this? Were you worried about getting sick prior to your surgery and if so, what did you do to prevent from getting sick?
    Best,
    Heidi
    Scheduled for surgery with Dr. Lenke Oct. 2012
    53*T 71*L
    Surgery 10/05/2012 T4-pelvis
    Correction: looks perfect! Will find out how perfect at future appointments

  9. #9
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    570

    Letters

    Hi Heidi,

    I understand where you are coming from with letters especially since you mentioned that you wrote a poem. But how about writing a different type of letter -support letter to your family while you’re in surgery?

    They will be waiting for many long and difficult hours, worrying about you, and waiting for updates. May be you can write a letter where you tell your loved ones not to worry, that you’ll be OK, that you’re a fighter and will get thru it, that you can’ t wait to wake up and see their faces. Just put a different spin on these letters…

    Best of luck with your surgery and please let us know how it went. I’ll be thinking about you.

    Irina.

  10. #10
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Heidi,
    I felt exactly as you prior to my surgery, BUT, felt so much better after talking to Dr. Lenke and Kelly the day of my pre-op tests. I started to become excited and focused on the fact that I was going to soon "be on the other side" and on the recovery road with a nice, straight back! You will do just fine.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  11. #11
    Join Date
    May 2012
    Location
    Columbia, SC
    Posts
    75

    I know you will be fine

    Hi, Heidi. I know you will come through surgery really well and have a great recovery. I can honestly say I was at total peace the last couple of weeks before surgery with Dr. Lenke. As I have said before, many friends were praying for us and have continued to do so and I know you know God is in control and will carry you through all of this as He did me. I have had an amazing recovery ( and remember I am 30 years older than you) with much less pain than I thought I would have. I am off all pain meds as of five days ago and I drove for the first time this week. The chief problem I have had is trouble falling asleep as a result of coming off the Vicodin. I had cut it down to once a day, and then once every other day and then stopped Monday. Apparently trouble falling asleep is common when going off it. I know this will resolve in a week or two and I am determined to not take anything for sleep as I never have and don't want to start now. I am walking every day (almost 2 miles today!) I will be praying for you and hope to see you in St. Louis on the 19th.
    Jane

  12. #12
    Join Date
    Feb 2012
    Location
    NC
    Posts
    129
    Irina- What a great idea! I think you may be on to something...
    Karen and Jane Thanks for the words of encouragement! It is comforting.

    For those that are interested, this is the poem I wrote the other day. I hope you enjoy
    Heaven Bound

    Nailed to the cross, I should be,
    But that’s the price He paid for me!
    A debt so high, no one can repay.
    All He asks is to trust and obey.
    I try with all my might
    To say and do what is right.
    To all the lost, I say,
    Isn’t it time to get on your knees and pray?
    The amazing grace that I receive
    Can be yours if you believe.
    In a world that is dark and grey, with sin all around,
    I smile because I know: I am heaven bound.
    The shining rays of light I see,
    It is the Holy Spirit engulfing me.
    Thankful for His wondrous love that I have found,
    So in love, I am heaven bound!


    Anyways, thought I would share.
    Scheduled for surgery with Dr. Lenke Oct. 2012
    53*T 71*L
    Surgery 10/05/2012 T4-pelvis
    Correction: looks perfect! Will find out how perfect at future appointments

  13. #13
    Join Date
    May 2012
    Location
    Columbia, SC
    Posts
    75

    Beautiful poem Heidi

    What a blessing. You are gifted!
    Jane

  14. #14
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525

    Thanks to Heidi and all that responded to her

    I have had a bad day with lots of severe sciatic pain that radiates to my thigh. I hope to get an injection of Cortisone on Thursday. All of your comments have brought me to tears and I will keep all of your sage advice in my scoliosis notebook...yes, maybe a little bit anal but I keep everything about my appointemts as well as suggestions from the forum in a 3 ring notebook. Heidi, I love your poem and I know that you will find peace and reassurance in your belief. Just relax and turn your worry over to God.

    Since Gayle and I have the same doctor, I shall ask him point blank about my concerns. like everyone's of not making it through the surgery. Hope that he doesn't say that I am a little old lady and good luck! Guess that i should get on Gayle's regime of exercise [no worry Gayle, I'll never match you!] and the suggestion about reiki was helpful.

    This thread and the forum have helped me come to peace about my scoliosis and now I'm just going to go with what happens.

    My gratitude to all that have shared their thoughts.

    And Heidi, sounds like you are a very strong woman and you will do very well.

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  15. #15
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    570
    Heidi,

    What a lovely poem. Do you like to write?

    My dad, who is retired now, writes a lot of poems (in Russian), prints them out and gives it to his friends and family. He has several books already. He was an engineer before and never wrote anything, but now he has a lot of free time on his hands and enjoys writing poems and articles for Russian language newspaper. Since you'd have a lot of free time in recovery, may be you can write more and make a book?

    Irina.

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