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Thread: My appt. with Dr. Lenke!! April 18th!!!!!

  1. #76
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Linda, Never look back and wish it was different. S... happens and it happened to you! Get help from a pain management MD to get off your pain meds when you finally get off them.

    I had my brace revised 3 times. I have a love/hate relationship with it, but I know how important it is, so I wear it.

    You are a survivor and amazingly strong!


    HUGS,
    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

  2. #77
    Join Date
    May 2010
    Posts
    346
    Quote Originally Posted by susancook View Post
    Linda, Never look back and wish it was different. S... happens and it happened to you! Get help from a pain management MD to get off your pain meds when you finally get off them.

    I had my brace revised 3 times. I have a love/hate relationship with it, but I know how important it is, so I wear it.

    You are a survivor and amazingly strong!


    HUGS,
    Susan
    . Susan, thanks for your kind words of support and your card was so So nice! I still love mail even if there's all this virtual friendship and communication. I'm glad to know I'm not the only one having trouble with the brace thing. Ugh! We are so far from St. Louis and have to get it adjusted in So. Dak. So am crossing my fingers it works. As I too know how important it is. Hope you're doing well in recovery. I am two weeks out and still quite tired. You are the strong one Susan~~~it helps a lot hear from you. We have to stay strong together~~~warmly Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  3. #78
    Join Date
    May 2009
    Posts
    3,745
    hi Linda
    i am concerned about your being so far out in the sticks...
    i think you will need careful monitoring when a specialist helps you
    wean off methadone...
    perhaps there is a doctor closer to you who can work WITH the specialist...
    ????? just trying to figure out how you will be closely watched and assisted...
    i am glad you will get the brace fixed...
    heaven forbid you fall again...best to be protected!

    hope you can get the appt soon...
    and ANY major surgery causes fatigue...especially one as major as what
    you have been thru....expect to be tired for a while...
    hopefully, rest, time and eating the right foods will help bring your
    energy back.

    feel better every day...
    jess...and Sparky

  4. #79
    Join Date
    May 2010
    Posts
    346
    Quote Originally Posted by jrnyc View Post
    hi Linda
    i am concerned about your being so far out in the sticks...
    i think you will need careful monitoring when a specialist helps you
    wean off methadone...
    perhaps there is a doctor closer to you who can work WITH the specialist...
    ????? just trying to figure out how you will be closely watched and assisted...
    i am glad you will get the brace fixed...
    heaven forbid you fall again...best to be protected!

    hope you can get the appt soon...
    and ANY major surgery causes fatigue...especially one as major as what
    you have been thru....expect to be tired for a while...
    hopefully, rest, time and eating the right foods will help bring your
    energy back.

    feel better every day...
    jess...and Sparky
    thank-you Jess and Sparky. I agree, I wish we lived closer to the city. Your advice about the pain management specialist working with my local Dr. Sounds good. If they don't get too greedy and want me to travel 200mi. a month. I have to take this one thing at a time. I need to get this gall bladder and brace thing taken care of first. Tomorrow I will call my Dr. again and jump start things. Best wishes to you and thanks for your support! Linda (I'll try to keep everyone in the loop!)
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  5. #80
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Hi Linda,

    wow, you sound great for having been through the wringer! I'm glad you are home.

    Please don't look back and blame yourself or second guess anything...you do what you have to do at the time, now you just need to concentrate on healing.

    It must be extra challenging being so far from good medical care. I hope your gallbladder will recover.

    Take care, and know that all your broken rod/revision friends here are sending positive thoughts your way!
    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

  6. #81
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Quote Originally Posted by babyboomer16 View Post
    Now I want off this stuff , it's going to take a specialist to know what they're doing. It has caused me a lot more bad than good.
    I know.

    To be honest, I like the sticks.....the older I get, the quieter I like things. I think if I had to wean again, better in a place thatís quiet....its good to sort out thoughts and feel whatís happening to your body.

    Linda, I think that you can do this and make it just fine, its going to be a slow process, and the weaning off all these meds will be a slow calculated process and always involves discomfort....

    For now, I wouldnít worry about it since you have your immediate healing milestones to conquer....the first 6-8 weeks are always the hardest. You have to get through this first stage.

    These braces that they fit for us before our surgeries usually fit horribly after we are done and yes, I had to have mine worked on down at the body shop.... If you are on methadone, and falling asleep like you say, having the brace on when out of bed is pretty important. I donít think you will make this mistake.

    Anxiety is a tough situation, and happens often. I used deep breathing exercises, in HARD, dwell, then release all the way, repeat.( I learned this from skiing, not from medication usage. Skiing off cliffs produces anxiety beyond belief, staying calm is imperative) Walking outdoors even if only 50 feet was helpful, using walking sticks or ski poles, breathing exercises while walking helps with the anxiety.....Yell at the top of your lungs if you have to. Anyone thatís around needs to that you need to yell. Yell, and then laugh about it......It is funny when you think about it. (smiley face)

    Here is a study. They talk about (MST) Medically supervised tapering. Finding a really great counselor would be a godsend......each individual has his or her own special circumstances and this counseling should be directed or honed in on each person.
    http://www.aegisuniversity.com/Aegis...%205-24-02.pdf

    One technique I use is to transfer my mind to a different place.....I like trees, so I would think about the Redwoods. If you like flowers, transfer to a field of flowers....(not poppies....he he) if so, working part time at a florist for 2 hours a day might not be a bad idea.....You see there are ways to handle each individual.....

    Think about your goals.....Was I scared about falling of a 1500 foot cliff when I went to Utah last Sept? I sure was, but only after I was there did I realize that it was just something in my mind that didnít matter....I focused on my goal which was getting to the top.

    Ed
    49 yr old male, now 59, 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. #82
    Join Date
    Mar 2010
    Posts
    2,755
    Linda,
    My PCP does all the prescribing of my pain meds and muscle relaxants. He went with the advice of my pain doc about how much baclofen to put me on. Other than that, he does it all right now. I have a signed "pain management contract" with him. He can do random drug tests on me when I come in. This is done to make sure that I'm "dirty" so they know I'm not selling my drugs. He knows how much pain I'm in, but it's to cover HIM in case someone calls it into question. Docs that prescribe too many pain meds can get into trouble these days. It's a sad situation when a doctor is not free to treat his own patients!

    As far as tapering off meds; I've done it many times and being ALONE and in a quiet place is the best if you can. When I'm sweating and feeling the all over "sunburn", I talk to my mind and reassure myself that it's my body's way of purging the poison. I wouldn't do it with methadone, though. Seek help for that when the time comes. But like Ed said, you need to focus on healing right now.

    Take care. One day at a time.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  8. #83
    Join Date
    May 2010
    Posts
    346
    I am so touched by the the concern and great help I am getting from all of you.(without judgment) Ed and
    rohrer01, such great advice and knowledge of the process of going off the pain meds. But you are so right, I have healing to do and one day is good and yet the next day I can be just like I'm going backwards. This I believe is pretty much the norm. for recovery in the beginning. Take care and wishing you all well! Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  9. #84
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Linda,

    We are basically in the same place right now in terms of recovery. It is not an easy place to be. I pray for you every day

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  10. #85
    Join Date
    May 2010
    Posts
    346

    Update

    Hi all,
    I am going to have a test done tomorrow to see how my gall bladder is working. I still have the tubing and bag catching sludge or whatever. I am hoping it can be removed. We have to travel 400mi. both ways to see the interventional radiologist. We are taking my brace along to see if we can get it fixed at a place that makes the same kind of braces. I am in so much pain when it is on it brings tears to my eyes. So wish me luck, cause I want to wear it. I don't know if any of you have had a brace with one leg held back by a medal piece about 8 inches long and a piece of Velcro goes around the leg to hold that in place. And ofcourse it's hooked to the upper part of the brace that holds the back and abdomen in place. The long piece of medal bends if I push a certain way on it so I can sit. But I walk kind of dragging the leg. It's to keep me from falling? And bending, twisting or anything else. The only time I fell before was at night when I got up to go potty. And I don't wear it at night. But now when I get up at night I wake Jim. We weren't even sleeping in the same room before. Spent a fortune on a new bed too. But don't know if my 2inch memory foam wasn't just as good. Yikes~~~ don't want to say that to my hubby. Anyway, recovery is going OK. I am walking very well. Better than I ever did after the first surgery with Dr. Lenke. I kinda hate to strap that brace on, as I won't be able to walk with it. And ofcourse muscles atrophy when not used. I will be able to move around, but not what you call walking. But I understand Dr. Lenke's feelings about this. I can't go through anymore of these huge surgeries! It's terribly hard on our bodies, as you all know!!! Hope this finds you all in good shape, or getting there anyway. God Bless you all and stay in touch . I want to know how you're doing. Fondly, Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  11. #86
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,691
    Linda,
    I hope that you can get everything resolved with your gall bladder. I'm glad you're walking well, but sorry that the brace is so uncomfortable. Can you put any type of cushions where it rubs? Get through this rough time and you will soon see the light at the end of the tunnel. I can tell you for a fact that at 2 1/2 years post op, I am so much s than stronger and with fewer aches than I had at 1 year or even 2 years post op. It will get better!
    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/

  12. #87
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Quote Originally Posted by babyboomer16 View Post
    . Susan, thanks for your kind words of support and your card was so So nice! I still love mail even if there's all this virtual friendship and communication. I'm glad to know I'm not the only one having trouble with the brace thing. Ugh! We are so far from St. Louis and have to get it adjusted in So. Dak. So am crossing my fingers it works. As I too know how important it is. Hope you're doing well in recovery. I am two weeks out and still quite tired. You are the strong one Susan~~~it helps a lot hear from you. We have to stay strong together~~~warmly Linda
    You are kind to say that I am so strong, but sometimes, I do not feel that way. YOU are the amazing one for your persistence in having back surgery. You fell the last time because you were dizzy from pain meds. You need to get off of them before you stop wearing your brace, no matter how long that takes.

    I had a bleeding sore on my side from my brace. Mine was fitted shortly after my surgery when I stood up for 10 minutes. My daughter taped the fitting and it is so funny! I was so doped up.

    Your encouragement to me is wonderful and I appreciate it.

    My surgeon is 12 hours away by car, but I flew this time. Next time we will probably drive.

    Take care. Fondly, 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

  13. #88
    Join Date
    May 2010
    Posts
    346
    Hi Karen and Susan, I am in Sioux Falls S.D. tonight. My appt. is at 6:15 in the morn. This Dr. Will do a test to see if the gall bladder is working well enough to take this drainage tube out. I would feel so much better without it. As far as the surgery on my back, I think all is well. Dr. Lenke did a good job of fixing the whole thing. And if I just do my part now, my life will be so much better in the future. Thanks for all the great support. Susan, I felt so bad and wimpy when you said you have a sore on your hip where the brace rubs.
    Karen that's a great idea about putting a cushion in the area that pinches me. But I am taking it to a place tomorrow to see if they can help fix the problem. Susan, hang in there with your recovery. You sound
    like you're doing pretty good. Karen, so happy to hear it gets better with time! I have a long way to go. Susan , we just have to be strong and look for the light at the end of the tunnel!
    Wishing you guys the best~~ Warmest Blessings to you , Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  14. #89
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,691
    Be strong. I know you are. It will get better and better. You can get the muscles back in time. I listened to an interview today on TV with Stacy Lewis who is #2 in the world for ladies golf professionals. She wore a brace 18 hours a day from age 10-18 and eventually had surgery. She believes whole heartedly that her scoliosis made her the person she is today and that without the toughness that it taught her that she would not be a successful golf professional that she is today.
    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/

  15. #90
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Hope all goes well with your appts. You are strong and will get through this.

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

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