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Thread: Surgery with Dr Lenke Jan 11

  1. #1
    Join Date
    Mar 2011
    Posts
    10

    Surgery with Dr Lenke Jan 11

    I'm 56 years old and have struggled with pain and limitations for years. My life has gotten smaller and smaller. I am at the point now that I can hardly stand or walk long enough to shower and brush my teeth. I am scheduled with Dr Lenke on Jan 11 for sacrum to T4. I have been a follower of this forum for several years and I feel like I have an idea what I am in for after reading the posts. I am scared of course but I am trying to remain positive as I really want my life back. I trust that Dr Lenke is the best but I worry about the new hospital setting. Has anyone had surgery there yet that could speak to their experience? I also worry that I am going into this without being able to really exercise.
    If anyone has words of wisdom I would love to hear them....How to get through the first few weeks, hospital advice, what is it like when you go to a hotel after? What do you need to survive in the hotel? Is an adjustable bed helpful? ect.
    I have a strong support system, wonderful husband and grown kids and friends. But I know this is really up to me.
    So scared, would love advice
    Momsam
    Stacy
    Surgery 2016 T-4 to Sacrum with Dr Samuel Cho Mount Sinai NYC
    48 degree right upper lumber curve
    41 degree thoracolumbar kyphosis

  2. #2
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,592
    Stacy, your description of being in so much pain that you can barely brush your teeth sounds like to many of us, me included. I could walk 1/2 block before sitting down from pain and could cook dinner, but eat 40 minutes after it was done (and I rested with an ice bag on my thoracic area)...and food was cold. While I have had many "challenges" since my original surgery, I am still very glad that I had surgery, because my life was so controlled by pain. You will be better after surgery, but it will take time.

    I did not go to Dr. Lenke or his hospital, so no suggestions there.

    Things that I suggest that you consider postop:

    - adequate pain control; take enough meds to be comfortable. When you decrease meds, do so slowly; keep a journal of your plan.
    - keep a written journal in the hospital. Give it to your family to write down what happens, what the doctor says, questions for the Doctor, etc
    - keep track of poop. Make sure that you use Colace (buy generic), Miralax, senna, suppositories, Mag citrate (last resort). When you leave the hospital (journal your poop), if you do not have a bm for 2 days, put in a suppository....this is where your loved ones put on a glove and grease up the suppository and slip it in. Buy your poop arsenal now and have everything available.
    - tie your call button to the siderail....very frustrating to look for it in the bed or on the floor postop.

    I was scared about having surgery until 2 weeks before surgery. 2 months before surgery, I printed a picture of Dr. Hu and pasted it on the back of my phone. Under her picture I typed out the word "Trust". I must have looked at that picture and said the word trust over a hundred times. I would take a deep cleansing breath and look at the picture. I truly trusted her completely at the time of the surgery. Helped me.

    I send you my best wishes for success and diminished pain. You have an awesome surgeon and a good attitude. You will do 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 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury 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
    2018: Removal L4,5 screw

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,119
    Quote Originally Posted by Momsam View Post
    I also worry that I am going into this without being able to really exercise.
    If anyone has words of wisdom I would love to hear them....How to get through the first few weeks, hospital advice, what is it like when you go to a hotel after? What do you need to survive in the hotel? Is an adjustable bed helpful? ect.
    I have a strong support system, wonderful husband and grown kids and friends. But I know this is really up to me.
    So scared, would love advice
    Momsam
    I assume you've already figured out that your exercise tolerance is very unlikely to increase without surgery. (It might never increase, but it's very likely to decrease as your spine continues to degenerate.)

    We typically tell patients not to get an adjustable bed, as it encourages them to spend more time there. We tell patients that with the exception of sleep, they should not be spending time in bed.

    If you haven't already looked at it, I have a list of helpful tips for recovery. You can find it here: http://www.scoliosis.org/forum/attac...5&d=1425448000

    --Linda
    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

  4. #4
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,592
    My surgeon said to never eat meals in bed. After surgery, a recliner is great.

    If you want to talk, send me a private message.
    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 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury 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
    2018: Removal L4,5 screw

  5. #5
    Join Date
    Mar 2011
    Posts
    10
    Thank you so much for the input. I will PM you.
    Stacy
    Surgery 2016 T-4 to Sacrum with Dr Samuel Cho Mount Sinai NYC
    48 degree right upper lumber curve
    41 degree thoracolumbar kyphosis

  6. #6
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    welcome momsam. im Kara good luck with your surgery
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  7. #7
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    I needed to be gone for 4 weeks. We rented an apartment from a company that claimed they were used by other ortho patients. We couldn't stay there because the furniture wasn't 'user friendly' for me or my husband. Everything was low & contempory. They couldn't even provide us with a straight back upholstered chair! If you decide to check out an apartment - check out the furniture!
    Heads up: My dr. said 'no recliner' for the entire 1st year of recovery & he was trained by Dr. Lenke.
    Best wishes to you!
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

  8. #8
    Join Date
    Mar 2011
    Posts
    10
    Thanks Peg. Right now I am living in my recliner! I'm glad you told me- I see Dr Lenke tomorrow and I will
    ask him about that. We are staying in a hotel in NY after the surgery has everyday furniture so I should be ok. (Chairs with straight backs Etc )
    I am so sedentary right now because I can't really walk or stand without getting into the pain. I know people say it's better to go into the surgery with some conditioning but that just won't be the case for me.
    I'm still so scared- even though I know Dr Lenke is a great surgeon.
    Stacy
    Stacy
    Surgery 2016 T-4 to Sacrum with Dr Samuel Cho Mount Sinai NYC
    48 degree right upper lumber curve
    41 degree thoracolumbar kyphosis

  9. #9
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Hi Stacy!

    There's 2 ways to look at the pain. Mine was manageable & I was functioning, however, each year it took more management. When finally decided on the surgery, I kept doubting my decision b/c I was functioning & I wondered if I could put it off 1 more year. You're in constant severe pain, so you know you HAVE to do this surgery now. It's still a big decision, but maybe the doubting piece isn't so strong.

    I was on the upside of poor shape prior to surgery. I did learn & practice the log roll over & over. It's so different when you're body is like dead weight, but I was glad I knew what to do! Even impressed some nurses!

    A suggestion: get a picture of your X-ray with all the new hardware. Most people have no idea what this surgery entails b/c everybody know somebody who has had back surgery.

    BTW, my outcome was better than I prayed for - I've learned not to limit God! I have no pain. Prayers & good thoughts to you, Stacy.
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

  10. #10
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Stacy,
    Many have already posted good suggestions. Dr. Lenke was my surgeon when he was in St. Louis and I am so thankful for that. I was fused T4-Sacrum at age 60. The fearful time before surgery was worse for me than the recovery. I knew it was not going to be easy, but I did better than I expected. After the surgery, I elevated the places I would be sitting with extra firm cushions from another chair to make it easier to sit and stand. I had to have an elevated toilet seat with arm handles for several months. For shaving my legs, I had a long plastic handle from a back scratcher taped to a disposable razor. Feel free to send me an email pottoff@htc.net or a PM.
    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
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,592
    I was not in particularly great shape before my surgery because like you, I was in a lot of pain.
    If you can, do leg lifts sitting in a chair. Raise your leg as high as you can and hold it for 5 counts and alternate legs. Do 3 sets of 10 every day.
    Being scared and crying because of your fear are normal.
    Your choice is to stay like you are in pain (and take lots of narcotics) probably in a wheelchair
    OR have a huge surgery that will probably give you your life back.
    You will be amazed how well you will do!
    Pain afterwards? Yes, but voice your need for meds often and keep a schedule for meds.
    Sending you calming thoughts.
    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 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury 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
    2018: Removal L4,5 screw

  12. #12
    Join Date
    Mar 2011
    Posts
    10
    Thanks so much Susan. I am doing those leg lift type exercises as much as I can tolerate. I saw Dr Lenke yesterday for my pre-op and he OK'd me
    to have a nerve root block injection to try to get me more comfortable so I can move around more in these 3 weeks prior to the surgery. I hope it helps.
    I am looking forward to being on "the other side" and working toward feeling better. Right now I feel like I'm just getting worse and worse.
    Thanks so much for your words of encouragement. I think the waiting is the hardest part....
    Stacy
    Stacy
    Surgery 2016 T-4 to Sacrum with Dr Samuel Cho Mount Sinai NYC
    48 degree right upper lumber curve
    41 degree thoracolumbar kyphosis

  13. #13
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    912
    Hi Stacy, I want to wish you the best on your surgery. And as far as the nerve block, I found out that it is very difficult to do on a scoliosis patient. I had a very hard time with it. Your surgery is so close I would question how much benefit you may receive from it and it is a very uncomfortable procedure. Ask questions from the person doing it.
    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

  14. #14
    Join Date
    Aug 2015
    Location
    Central PA
    Posts
    50
    Hi Stacy! I wish I could offer some info about the new hospital setting. I'm having the same surgery as you, T-4 to sacrum, on January 5. Dr. Lenke told me they built this OR to his specifications and that it's better than the one in St. Louis. He seemed pretty excited about it! I just made my hotel reservations for post-hospital. At the moment, I'm planning on staying out in Yonkers. Kathy recommended the hotel. How about you? My husband and I were in the city last week for my pre-op appointment. After meeting with Dr. Lenke, we were able to tour the hospital. I wanted to see it before-hand, so I could have a picture in my mind. Everything seemed fine and the people I spoke with seemed very nice. The guy (patient coordinator?) who gave us the tour said he thinks Dr. Lenke is a genius. I'm trying to focus on that rather than worry about all the things I can't control. It's very overwhelming, especially because it's getting so close!

  15. #15
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Stacy-I'm looking forward to talking with you this week. Yes, definitely the waiting time before surgery is so difficult!
    Mom of 4-I just noticed your surgery date is January 5. I will be celebrating my 5 year anniversary of my surgery with Dr. Lenke on the 5th. You both are fortunate to have Dr. Lenke for your surgeon. I will always be thankful for his skills!
    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/

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