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Thread: Surgery scheduled - sooooo many concerns

  1. #1
    Join Date
    Feb 2013
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    45

    Surgery scheduled - sooooo many concerns

    I've been reading these posts for so long truly believing that despite a significant curve I was going to be the exception and escape surgey. Not! I've had scoliosis since I was a kid and as a child was always a borderline candidate for surgery. (Curve was in the 40's and wore a brace for years - treated by Dr. Richard Ulin in NYC). Flash forward to my 30's and 40's and increased pain and increased curves. Went to see Drs. Neuwirth, Lonner and Boachie. All agreed surgery was the inevitable way to go. I decided to stay with Boachie and take a wait and see approach. Began "training" for surgery by going to the gym and staying fit. Pain was always there but hey, I'm tough so living around it wasn't a big deal. My fear of surgery was bigger. Well, now at the ripe old age of 49 my lumbar curve is 91 degrees (up 10 degrees from a year ago) and with Dr. Biachie relocating in October the writing is on the wall.

    I'm scheduled with Drs. Boachie and Kim at HSS for surgery in July. Fusion will be from T9 - sacrum. Help! You'd think after all the time I'd be prepared but not even close! Fear is huge! I've always been way physical despite my condition - I workout, garden, clean, travel and just generally live! I fear what is going to happen to me post surgery and that the pain that is now bearable is going to be replaced by surgical agony.

    Any insights that anyone can give me would be much appreciated. The fear of making an irreversible mistake is daunting!

  2. #2
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,184
    Hi Rise, :-)

    Welcome. I am guessing many of the adult patients will chime in to answer your post.

    But as a parent of two kids who were surgical, one of whom wore a brace, I was wondering if you are bitter over wearing the brace and also needing surgery. I guess I'm wondering what the odds of avoiding surgery for life would have to be with brace wear for you to think it was worth it?

    The other thing is did you start wearing the brace when your curve was over 40*? That is not the protocol.

    Good luck.
    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."

  3. #3
    Join Date
    Feb 2013
    Posts
    45
    Hi Sharon,

    I wouldn't change a thing. We all have crosses to bare and wearing a back brace isn't the worst that life can give you. Was it ideal? No, but it was a part of my life and it was just something I dealt with. Had I had surgery so many years ago I have no doubt I would have required further surgeries down the road as technology has improved drastically. Wearing that brace and doing the things I've done bought me a good deal of quality time so no regrets.

    I'm not sure of the exact curve when the brace wearing began but it was always at or around the 40 degree mark. Protocol for protocols sake is not something I'm a fan of. Medicine and life shouldn't be cookie cutter. You have to choose the path that makes the most all around sense for you and your exact circumstance.

    Risë

  4. #4
    Join Date
    May 2008
    Location
    reno,nevada
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    Rise

    It’s a good time you know....things are so much better now. I waited 34 years and I think that dodging the bullet years ago was wise.....I couldn’t have asked for a better turnout.

    I think with a 91 degree Lumbar and 10 degree progression in the last year, you are pointed in the right direction and your decision is sound. Would love to see your x-rays.....

    Its amazing to see so many like you and I that hid in the cracks for all the years wondering what was going to happen.

    Its good to see you posting here!

    Is Dr B proposing an ALIF? (From the front)

    Will he use BMP?

    Deep breaths now...

    Ed
    49 yr old male, now 60, the new 55...
    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
    Jan 2008
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    Quote Originally Posted by titaniumed View Post
    Would love to see your x-rays.....
    I recently read that this is the third most used pick up line. :-)
    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."

  6. #6
    Join Date
    May 2008
    Location
    reno,nevada
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    LOL

    How about, “I have inversion boots back at my place” “You wanna try on those suckers” (He he) Did I mention I have electrostim?

    We need a dedicated comedy thread....

    Actually, 91 degree lumbar curves are not your everyday thing when you think about it....Usually the largest curves are T curves.

    Ed
    49 yr old male, now 60, the new 55...
    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

  7. #7
    Join Date
    Jan 2008
    Location
    NC
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    Quote Originally Posted by titaniumed View Post
    LOL

    How about, “I have inversion boots back at my place” “You wanna try on those suckers” (He he) Did I mention I have electrostim?

    We need a dedicated comedy thread....

    Actually, 91 degree lumbar curves are not your everyday thing when you think about it....Usually the largest curves are T curves.

    Ed
    LOL Ti Ed. :-)

    Yeah that is quite the curve. Might even be in Lenke territory.
    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."

  8. #8
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,952
    Dr. Boachie no longer does ALIFs. And, since they're going to the sacrum, I'm guessing he'll do TLIFs or XLIFs and TLIFs. It's also possible that Rise doesn't need any anterior interbody fusion or release.
    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

  9. #9
    Join Date
    Feb 2013
    Posts
    45
    Quote Originally Posted by titaniumed View Post
    Rise

    It’s a good time you know....things are so much better now. I waited 34 years and I think that dodging the bullet years ago was wise.....I couldn’t have asked for a better turnout.

    I think with a 91 degree Lumbar and 10 degree progression in the last year, you are pointed in the right direction and your decision is sound. Would love to see your x-rays.....

    Its amazing to see so many like you and I that hid in the cracks for all the years wondering what was going to happen.

    Its good to see you posting here!

    Is Dr B proposing an ALIF? (From the front)

    Will he use BMP?

    Deep breaths now...

    Ed
    Hi Ed,

    Surgery will be posterior only. Boachie no longer does A/P although had I done this several years ago with him he would have. Another reason my waiting has been a "positive." As far as BMP, yes he will use that along with my own "material."

    Yes, my curve is definitely up there in terms of degree and since its mostly lumbar (my thoracic curve is currently around 51 degrees or so) cosmetically most people have no idea of the severity of my back problems. I hide it well :-) although my X-rays reveal otherwise.

    Any insight into how my range of motion is likely to be impacted and how limited my activities are going to have to be? Also, what the usual course of post op pain like? I picture waking up from surgery in unspeakable agony. Any validity to that???

    Risë

  10. #10
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Rise,
    A good friend and huge support person for me before and after my surgery, also by the name Karen, noticed your post and asked me to give you her email. After several attempts, she has been unable to post on the forum. Her curves were 89 thoracic and 90 lumbar and Dr. Boachie was her surgeon. Kbeard2086@aol.com. She would like to correspond with you and answer your questions.

    I was extremely active before my surgery and thought even though my curve seemed to be progressing, that I probably would never have surgery. After all, I wasn't in a lot of pain. To make a long story short, I had surgery with Dr. Lenke on January 5, 2011 at age 60. I thought that my life would never be the same. I was pleasantly surprised. Recovery from surgery was tough but not as difficult as the stressful time waiting for 13 months after deciding to have surgery. I second guessed my decision for surgery hundreds of times before January 5th. I can honestly say that surgery was one of my best decisions I have ever made. I have a video of my first golf round after surgery in my signature. My swing is much better now. I couldn't begin to imagine how I could swing a golf club with long rods and screws in my spine! Now, at three years post-op, there is no way that I feel deprived because of my surgery. While nothing is a guarantee, I believe my odds are better for an active life for the next 30 years because I had 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/

  11. #11
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,972
    Its good news that you get to skip the ALIF....

    I have a mobility thread in my signature with a few photos. You might want to take a peek. I have adapted wonderfully.....Adapting and patience will be things you will think and know about after a few years of recovery time.....it’s a multiple year recovery at our age. I was 90% recovered at 12 months. 100% after 2 years.

    One of our main fears has to do with surgical pain and post op pain....It really is a scary thing wondering about what is going to happen....Fear of the unknown. After a few surgeries, after gaining knowledge, this fear isn’t so bad anymore, I can walk in and be pretty cool about it now....For anxiety, I would walk. For extreme anxiety, I would run and run till it passed. Not as bad as Forrest Gump, but you get the idea. Breathing deep is important before and after our surgeries.

    For those in pain before surgery, what happens is that you trade pains. The old aches get replaced with surgical and healing pains. You will recover from these pains if everything goes well. Complications can happen, and we see and read about some of these things here. The main ones are infection and pseudarthrosis, or a non-union. Our main goal is to fuse. We want that bone to grow, fuse, and create a solid bridge of bone between our vertebrae. The rods hold everything till we fuse.

    On the topic of unspeakable agony...The worst was when I passed an 8mm kidney stone. Renal colic is the worst, especially with a large scoliosis. I did this before my scoli surgeries so I had some experience with major pain. Major pain is dealt with major drugs.....and yes, they work well. Morphine, Diaulid, Lortab, etc are the ticket. These injectables and IV meds control 100% of your pain. It’s the weaning that’s hard, and we all have to wean off our meds. You will be weaned to oral medications before you leave the hospital, I think the most common would be Oxycodone or Percoset, which is Oxy with Tylenol. These carry us through the first few months, and the average time for complete weaning would probably be around 8-12 weeks. This should be a goal in your recovery. After I was home, I took many hot hot baths per day for 3 months for pain. 106 degree water works very well.

    Some of the things that happen to all of us is that its hard to get comfortable after surgery. The hospital beds had me quite upset in the hospital, I couldn’t believe that they could actually build something so uncomfortable. I have known people to have friends sneak a piece of foam into hospitals because of this. I would get a piece of latex (Bone colored) foam, a topper, 3-4 inches thick for your bed. I considered this the most important thing other than having a positive attitude. Know and trust that you will climb this steep mountain, and summit. Its focusing on your goal, keeping your eyes on the prize that counts. Have trust in your surgical team. Dr Boachie has been operating on these kids in Africa for many years now....If anyone has the hands on experience with devastating deformity cases, its him.

    He needs a shirt that says “Been there, done that”.

    Heck, I need a shirt that says that. (smiley face)

    Ed
    49 yr old male, now 60, the new 55...
    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

  12. #12
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,577
    Don't worry about waking up in agony. There are some great drugs that make pain fairly controlled after surgery. Talk with your doctor and you will be reassured. At UCSF, the meds resulted in my not even remembering the pain....or most of my 2 weeks in the hospital. Pain does vary some, but it is generally very well controlled.

    So, take a very deep breath. You will be fine! Honest!

    Sending relaxing thought your way,

    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

  13. #13
    Join Date
    Feb 2013
    Posts
    45
    Quote Originally Posted by golfnut View Post
    Rise,
    A good friend and huge support person for me before and after my surgery, also by the name Karen, noticed your post and asked me to give you her email. After several attempts, she has been unable to post on the forum. Her curves were 89 thoracic and 90 lumbar and Dr. Boachie was her surgeon. Kbeard2086@aol.com. She would like to correspond with you and answer your questions.

    I was extremely active before my surgery and thought even though my curve seemed to be progressing, that I probably would never have surgery. After all, I wasn't in a lot of pain. To make a long story short, I had surgery with Dr. Lenke on January 5, 2011 at age 60. I thought that my life would never be the same. I was pleasantly surprised. Recovery from surgery was tough but not as difficult as the stressful time waiting for 13 months after deciding to have surgery. I second guessed my decision for surgery hundreds of times before January 5th. I can honestly say that surgery was one of my best decisions I have ever made. I have a video of my first golf round after surgery in my signature. My swing is much better now. I couldn't begin to imagine how I could swing a golf club with long rods and screws in my spine! Now, at three years post-op, there is no way that I feel deprived because of my surgery. While nothing is a guarantee, I believe my odds are better for an active life for the next 30 years because I had surgery.
    Karen,

    Thank you so much for your reply. Seeing you swing a golf club and reading that you have no regrets is HUGE! It's more than a little reassuring to think that life may not quite be same "on the other side" but it can still be an active one. One of my big joys/escapes is walking Siesta Key with my husband and being able to do that (and pick up shells) without pain is a big goal of mine.

    Also, I will definitely reach out to your friend, Karen. It sounds like she and I have similar paths to travel.

    All the best. I am sure I will reach out to you with more questions/concerns.

    Risë

  14. #14
    Join Date
    Feb 2013
    Posts
    45
    Thanks to all of you for your insights and stories. It is always reassuring to know that we don't walk alone and it is a comfort to gain strength and wisdom from those who have gone before.

    I am sure there will be more questions on my part and I truly appreciate your willingness to share.

    Best,
    Risë

  15. #15
    Join Date
    Sep 2012
    Location
    Peabody, ma
    Posts
    81
    Hi Rise,

    I had surgery almost a year and a half ago at age 62, almost 63. As many of us say, we are on a two year recovery plan. The first year of my recovery I was very careful about everything. Now I am starting to garden, practicing my golf swing (I do a better job without a golf ball while in my backyard). I was off all drugs within three months. Oh yeah, my curve was 80 degrees and getting worst.

    Even though the doctor was not able to give me the complete correction he wanted, due to vertebrae that had fused together on their own, I am still thrilled I had the surgery. To sum up my story in one thought, the floors in my house are either tile or wood. I was unable to sweep more than one floor without pain,I can now sweep every floor at one time.

    Hope my comments help put you at ease.

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