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Thread: Scared but scheduled for T4-pelvis Fusion Oct 2015

  1. #1
    Join Date
    Aug 2015
    Location
    Central PA
    Posts
    43

    Scared but scheduled for T4-pelvis Fusion Oct 2015

    I'm new here and so very scared!

    My scoliosis was diagnosed in my early 20's, by a dressmaker of all people! Over the years, the curve has progressed and so has the pain. I take some sort of pain reliever (acetaminophen or ibuprofen) every day and use a heating pad often. Now that I have a surgical date, I'm beginning to question if the pain is bad enough to go through with it.

    While I don't have a specific surgical plan yet, I am scheduled for a 2 day procedure, Anterior Fusion L4 to S1 and Posterior Fusion T4 to Pelvis.

    The last doctor I saw (not the one doing the surgery) told me it wasn't a matter of if I have surgery, but when. He said if I don't have it, my rib cage will end up on my hip.

    According to my X-rays and MRI, I have a lumbar scoliosis with a rotary component convex left measuring 60 degrees and a compensatory lower thoracic curvature convex right measuring 24 degrees. I was also told that I have significant subluxation of L2 laterally to the left with respect to L3. Mild spinal stenosis. Encroachment of the neural foramina on the left specifically T7/T8-T10/T11. Large disc bulges involving the cervical spine. Kyphosis, not sure what degree.

    I hate to say it, but I don't completely understand it all! I do know that, if possible, I avoid activities that I know will cause me discomfort/pain (standing, walking, etc). I've shrunk 2 inches. The curve is progressing. I now get a "sensation" down my left leg all the way to my toes. I had a CT Myelogram, but didn't get the results explained because I was referred to another surgeon.

    I'm a 47 year old married mother of 4. I have a pretty good support network, and timing-wise, it seems like now is good. But I keep thinking, what if my surgeon isn't good enough? What if the hospital provides lousy care? Is the "potential" improvement worth the risk? Does the pain really warrant me having major surgery like this?

    I've changed my mind a hundred times since I scheduled. I'm going back to see my surgeon on Monday to ask more questions. The week after that, I am scheduled to start donating blood.

    Any thoughts would be GREATLY appreciated!!!

    Thanks!
    Nancy

  2. #2
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Welcome Nancy

    Who is your surgeon and what hospital are you using?

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #3
    Join Date
    Aug 2015
    Location
    Central PA
    Posts
    43
    Thanks, Melissa!

    Dr. Daniel Gelb
    University of Maryland Medical Center

  4. #4
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,548
    Welcome to the forum Nancy!

    I see that Dr Gelb has a Washington University fellowship and a Cotrel fellowship....He is no doubt a scoliosis surgeon. Dr Cotrel is a 50 year French spine deformity genius and pioneer. He wrote a book called “In the sands of Berck” It’s a good book, but it seems that I’m the only one who appreciates this material. (smiley face)

    http://www.amazon.com/In-Sands-Berck.../dp/B003Y5BQ7O

    Where do we start? I guess there comes that time when we “heavies” have to make our commitment......and yes, we are all very scared. I think I was lucky that my mind blowing pain helped in my decision. I also knew that the pain would only get worse......Degeneration is a hard thing...

    It’s a 2 year recovery......The first 6 weeks are the hardest and I guess the easiest way to explain recovery would be to say figure roughly 10% improvement per month....(I know, the math doesn’t work)

    I was 90% after a year. It took another full year for the last 10%. I call my second year, my fine tuning year.

    Being an informed patient is very important. Knowing that things can happen regardless of surgeon and knowing that we are very complicated needs to be understood. Having a positive attitude is the only way to handle scoliosis surgery.....Try not to think about negatives if you have made your commitment. You will learn patience to its extreme, and adapt with the best attitude you can.

    I went outside and ran for anxiety......learn to breathe deep.....

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,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

  5. #5
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Welcome aboard, Nancy! It's a big decision, and a tough one!
    Learn as much as you can about the surgery & the healing process.
    Prepare your house, so things are within your limited reach. There are lots of lists on this board of things to do to get ready. Feeling prepared helped me a lot.
    Also, have a picture of a fusion or your fusion to share with others. Everyone knows someone who has had back surgery - scoliosis fusions are so much bigger than the 'average' back surgery that comes to mind for most people. I took a photo of the skeletal model in my surgeon's office.
    Sending prayers!
    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!

  6. #6
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Nancy,
    Welcome to the forum. I couldn't have made it through the pre-surgery time without this forum. While looking forward to getting a straight spine, I was petrified of the surgery. The knowledgable people on this forum helped me through it all-before surgery and during my recovery. Best of luck with your surgery.
    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/

  7. #7
    Join Date
    Aug 2015
    Location
    Central PA
    Posts
    43
    Ed, Peg and Karen-I can't thank you enough for your kind words and suggestions! This forum is amazing. It's such a blessing to be able to connect with people that are or were in the same shoes as me!

    Nancy

  8. #8
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Totally agree with previous posters.

    My biggest anxiety was caused by not knowing... I wanted answers to my questions - the good, the bad and the ugly. I needed it all, so that I knew exactly what I was facing. Members here were very helpful. I got all my answers here and I felt more confident going into surgery.

    I was lucky, I could walk without pain (but couldn't stand for more than 30 seconds without pain) and I was a kayaker, so I got very fit. This helped with my fears as well, because I went into surgery feeling like I could face anything - and win. And I did.

    So, 1) knowledge, 2) fitness, 3) preparedness - i.e. house, family, help.

    Very best of luck. You can do this!
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  9. #9
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Nancy welcome to the forum. It is a scary ride for sure. If you have a good support staff that is gold. There is never a perfect time. Things get in the way. My only advice would be to choose a time of the year that you will be able to get outside. You do need to do a lot of walking at first and that is hard to do inside. Good luck. Getting ready will just grab you and take you along.
    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
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    welcome to the from Nancy
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  11. #11
    Join Date
    Aug 2014
    Posts
    170
    Quote Originally Posted by Mom of 4 View Post
    I'm new here and so very scared!

    My scoliosis was diagnosed in my early 20's, by a dressmaker of all people! Over the years, the curve has progressed and so has the pain. I take some sort of pain reliever (acetaminophen or ibuprofen) every day and use a heating pad often. Now that I have a surgical date, I'm beginning to question if the pain is bad enough to go through with it.

    While I don't have a specific surgical plan yet, I am scheduled for a 2 day procedure, Anterior Fusion L4 to S1 and Posterior Fusion T4 to Pelvis.

    The last doctor I saw (not the one doing the surgery) told me it wasn't a matter of if I have surgery, but when. He said if I don't have it, my rib cage will end up on my hip.

    According to my X-rays and MRI, I have a lumbar scoliosis with a rotary component convex left measuring 60 degrees and a compensatory lower thoracic curvature convex right measuring 24 degrees. I was also told that I have significant subluxation of L2 laterally to the left with respect to L3. Mild spinal stenosis. Encroachment of the neural foramina on the left specifically T7/T8-T10/T11. Large disc bulges involving the cervical spine. Kyphosis, not sure what degree.

    I hate to say it, but I don't completely understand it all! I do know that, if possible, I avoid activities that I know will cause me discomfort/pain (standing, walking, etc). I've shrunk 2 inches. The curve is progressing. I now get a "sensation" down my left leg all the way to my toes. I had a CT Myelogram, but didn't get the results explained because I was referred to another surgeon.

    I'm a 47 year old married mother of 4. I have a pretty good support network, and timing-wise, it seems like now is good. But I keep thinking, what if my surgeon isn't good enough? What if the hospital provides lousy care? Is the "potential" improvement worth the risk? Does the pain really warrant me having major surgery like this?

    I've changed my mind a hundred times since I scheduled. I'm going back to see my surgeon on Monday to ask more questions. The week after that, I am scheduled to start donating blood.

    Any thoughts would be GREATLY appreciated!!!

    Thanks!
    Nancy
    Hi, Nancy -

    I'm ten months out from surgery and can say now that I'm so happy I did it. I put it off for as long as I could, thinking that it was a choice and that someday, I would get around to it. (smiley) A year ago in August, I twisted in bed and broke a facet joint (I had broken one before years ago). All of a sudden, I realized that (for me) I wanted to get it taken care of before something worse happened. That day a year ago really scared me. So, even though the timing was not great for me, I went ahead.

    The first few months were hard, but honestly, those are vague memories now thankfully. I have almost no low back pain and can walk and stand better and longer now than preop.

    It sounds like you have a good surgeon and lots of family to support you, which is fantastic! You never know what kind of care you'll have at any hospital. I would suggest to you that you have family members at the bedside to advocate for you...people who know you who can tell if something is not right. You'll be on a lot of medications during your hospital stay. I barely remember the hospital now, at ten months out. Sometimes I still can't believe I'm on the other side...I lived with knowing I needed surgery for so long.

    I found the forum here doing research a few years ago when I was trying to find surgical alternatives. The people here are a HUGE blessing. If this seems like a good time to go ahead, then I wouldn't hesitate. Your mental attitude and the support of your family and friends, in my opinion, will make all the difference in your outcome. You'll make the right decision! (smiley)

    Good luck to you. Sending gentle hugs!
    Fifa

  12. #12
    Join Date
    Aug 2015
    Location
    Central PA
    Posts
    43

    Appointment with Dr. Lenke

    Today was an eventful day! I got a call from Kathy at Dr. Lenke' s office. She said Dr. Lenke will see me. I can't believe it!!! I sent my CD's several weeks ago and never thought I had a chance. Someone is supposed to call me tomorrow to schedule the appointment. In the meantime, I am still scheduled for surgery in late October in Maryland. I just donated blood for the first time yesterday, with 3 more donations scheduled and pre-op testing on Monday, 10/5. I'm excited, but conflicted.

    When I originally spoke with Kathy, she told me Dr. Lenke wouldn't do an anterior surgery on me because he can do everything needed posterior. One surgery sounds much better than two, but I'm wondering why the surgeon in Maryland can't?

  13. #13
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Nancy,
    I am so excited to read that you have an appointment with Dr. Lenke. He was my surgeon and is one of the best in the country. I could be wrong, but I think he actually teaches other surgeons the "reach around" method of fusing the spine so that there is only one incision and one day for the surgery. I know that's what he did with my spine. I am fused T4 to the sacrum and have returned to all of my former activities with some modifications. Everyone is different and not all have as good of results as I have and I feel extremely fortunate. I truly believe that having the best surgeon possible certainly increases your odds! Also, get in the best physical shape as you possibly can. I'm anxious to hear about your appointment with Dr. Lenke. Tell him that Karen, the golfer from St. Louis, said "Hi".
    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/

  14. #14
    Join Date
    Nov 2014
    Location
    New York
    Posts
    83
    Hi Nancy,

    You and I could be twins! Except I have 2 kids....but that's enough! Our levels are/were the same, as are many of the degrees and curvatures. I had the surgery in January and would be more than happy to talk to you. My surgeon was Dr. Lonner in NYC. Your description of your current status, including limitations and pain, sounds exactly like me before surgery. Also, your fears sound like mine!!! To quote my little kids, "you're copying me!" Definitely private message me if you'd like!

    Hang in there! In my opinion, this is the toughest time!

    K

  15. #15
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,548
    Quote Originally Posted by Mom of 4 View Post
    I'm excited, but conflicted.

    When I originally spoke with Kathy, she told me Dr. Lenke wouldn't do an anterior surgery on me because he can do everything needed posterior. One surgery sounds much better than two, but I'm wondering why the surgeon in Maryland can't?
    Each surgeon has to weigh the pros and cons to each method or surgical attack for each patient. My surgeon added the ALIF anterior procedure since he felt that it was necessary due to a high level of degeneration in the disc area or front part of my spine.....I don’t think that just because all scoliosis surgeons don’t do posterior only wrap around procedures means that they are not trained well or have lack of experience. Some of the procedures really do get quite involved, and many of the “scoliosis” surgeons are trained to do these procedures.

    I hope this makes sense.....

    If you have a date set with your surgeon, and decide to switch to another surgeon, give him notice if you do pull the plug. These guys put an intense amount of thought into these surgeries.....My surgeon wanted a 30 day notice if I decided I was going to chicken out. I did do that once in the past, and its ok, but you shouldn’t wait till the last minute. Getting a second opinion is also ok, and perfectly acceptable to mention. If the 1st surgeon has a problem with that, then move on....

    You need to be comfortable with your surgeon.....

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,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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