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Thread: Surgery 2 years ago

  1. #31
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    424
    Susan, I have a call into speak with Dr Lenke, or at least a request.dr Lenke requested I send him a ct and bone scan then I get to,she doesnít want to see me. Sounds kinda wonky to me!
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  2. #32
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,573
    Quote Originally Posted by titaniumed View Post
    Your not kidding....Rita did call me yesterday, and we had a good talk.

    Its up to Rita in regards to posting here on her case, which of course is so difficult given the amount of pain she is in. Internet communication can be a difficult thing and with the amounts of information that all of us have, the facts can really jet jumbled. You cant cover everything by e-mail or texting, and if the telephone is scrapped, we might as well all be mutes. Nobody likes to use the telephone anymore which drives me crazy. Of course, in person is best.

    I hope that she can finally get repaired and out of pain with the history that she has.....Fingers are crossed.

    She does have all her diagnostics.

    Susan, excellent post, you and I are on the same page. If I came up there, we could talk for days....

    I just have to mention that in talking to many folks around here for years, many revision patients with incredible spine and scoliosis histories, how can I not mention my surgeon, Dr Menmuir, who pulled off some incredibly difficult surgeries on me. Of course there are no guarantees and things will happen with adult scoliosis surgeries, but still I am amazed at how well I came out. Its been over 11-1/2 years now.

    Ed
    Ed, Call Dr. Menmuir and ask him to come out of retirement and help me and Rita!

    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. #33
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    424
    I just wish it was that easy.
    Iím gonna have to see someone soon because my hands are numb and tingly now..why Iím dropping so many things.
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  4. #34
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,170
    That's caused by issues in your neck. Did you tell Dr. Lenke about those symptoms? Tell some doctor. Ed can advise on this.
    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."

  5. #35
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,950
    It sure does sound like the neck.... The neck affects the arms and the hands. Thumb, index and middle finger numbness is C5-6, C6-7. Herniation's also can protrude left, right, and center. Mine protrude to the left, so my left hand can get tingly and numb on some days. Stenosis in the neck is also problematic. I cant see any scoliosis surgeons not looking at the neck since its part of the spine package. Scoliosis patients have so much on the plate that they might not mention other problems that they see....BTW, your engine needs a complete re-build, AND you need 4 brand new tires. Its hard to reveal that much bad news. I am sure that head shaking and sighs happen after many of us leave the office. There are never any easy answers.

    My neck has no spinal deformity at all, yet is a problem. Disc degeneration in the neck (C5-6 C6-7)comes in 2nd place after the lumbar. These stats are for everyone, not just scoliosis patients.

    I am not rushing into neck surgery....

    These problems that we have sometimes are not easy. Even if you pinpoint a pain producer, there is this element of risk that needs careful consideration. Not finding any pain producers makes it that more difficult.....but people will travel to seek out experts and not just having to do with spine. There is always hope that someone else will think differently and look with new and different diagnostics. Its important that diagnostic equipment manufacturing companies continue on with new imaging technology. Larger well known scoliosis training centers and specialty hospitals are the best chance that new technology is being explored. I am a strong believer in new technology and devices.

    Rushing into surgery as adults is never something to take with a grain of salt. Scoliosis revision patients are the bravest people on the planet....the thing is that the odds of complication increase every time you go under the knife.

    If you want to get struck by lightning, go hang out on a Florida golf course, but you will never get that hole in one if you don't try.

    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

  6. #36
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    424
    And,sometimes we donít have a choice. I know something is not right. I should not be in this much pain all day every day.

    pS Ed, I didnít receive your last message. All I got was a blank page.
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  7. #37
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    424
    I have just tonite read all the followups on this thread. You guys are ALL the best. Because as I lay I on my bed dying in pain because Iíve been determined to do something that turned out to be too much for me, I think of all you guys giving me hope that one day, someday, I wonít be in all this pain every day. Some days it realily feels like this might be the time it literally never lets up. AS I continue working full time, I feel this pain every day all day.i come home from work, lay down for awhile before I do anything more...sometimes I fall asleep and then it turns into couple hours or more. For starters, im going to contact Twin Cities Scoliosis Ctr with my copies of my ct scan, bone scan and plain films. See what they say anyways. I canít keep this up the way Iím going.i will for sure keep you all posted, of course.
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  8. #38
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,949
    Quote Originally Posted by RitaR View Post
    I have just tonite read all the followups on this thread. You guys are ALL the best. Because as I lay I on my bed dying in pain because Iíve been determined to do something that turned out to be too much for me, I think of all you guys giving me hope that one day, someday, I wonít be in all this pain every day. Some days it realily feels like this might be the time it literally never lets up. AS I continue working full time, I feel this pain every day all day.i come home from work, lay down for awhile before I do anything more...sometimes I fall asleep and then it turns into couple hours or more. For starters, im going to contact Twin Cities Scoliosis Ctr with my copies of my ct scan, bone scan and plain films. See what they say anyways. I canít keep this up the way Iím going.i will for sure keep you all posted, of course.
    Hi Rita...

    I could have written this. Prior to my first scoliosis surgery at age 42, I had a tremendous amount of pain. Thankfully, I was self-employed, so I could lay down in the late afternoon to relieve the muscle pain. It was the only way I could get through making dinner.

    Although I tried a lot of different therapies, I look back now and wish I had found a good physical therapist to see if there was something more I could have done to avoid that surgery. I don't think PT works for everyone, but it works for a lot of people. I think the keys are 1) finding a good therapist, 2) making sure you're doing the exercises correctly, and most importantly, 3) being religious about doing the exercises every day.

    --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

  9. #39
    Join Date
    Jan 2016
    Location
    Sioux City, Iowa
    Posts
    100
    Quote Originally Posted by RitaR View Post
    I have just tonite read all the followups on this thread. You guys are ALL the best. Because as I lay I on my bed dying in pain because Iíve been determined to do something that turned out to be too much for me, I think of all you guys giving me hope that one day, someday, I wonít be in all this pain every day. Some days it realily feels like this might be the time it literally never lets up. AS I continue working full time, I feel this pain every day all day.i come home from work, lay down for awhile before I do anything more...sometimes I fall asleep and then it turns into couple hours or more. For starters, im going to contact Twin Cities Scoliosis Ctr with my copies of my ct scan, bone scan and plain films. See what they say anyways. I canít keep this up the way Iím going.i will for sure keep you all posted, of course.
    Hi, Rita. I am so sorry you are living in so much pain. I hope you can find some answers soon.

    I had my surgery 3 years ago at Twin Cities Spine Center. My surgeon was Dr. Joseph Perra. He gave me my life back. I really like him as a surgeon, but also as a person. Anyway, I'm sure they are all good at that facility. Please keep us posted on what they tell you.

    Kathy
    Decompression surgery L4/L5
    April 3, 2015
    Twin Cities Spine Center - Dr. Joseph Perra
    Fused from T11 - Sacrum anterior/posterior
    June 24, 2016 - 55 years old at surgery
    Twin Cities Spine Center - Dr. Joseph Perra
    Before Surgery: 42 degrees lumbar, 28 degrees thoracic
    After Surgery: 10 degrees lumbar, ?? Thoracic
    2 inches taller

  10. #40
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    424
    Oh Kathy,
    I cannot tell you how bad the pain is! I just can bearly make it. The pain is so bad and just disabling. Iím almost to the point I canít stand it. Iím missing work. I come home from work and straight to bed. I wouldnít recommend this for anyone! I just donít know where to turn! I try to get ahold of Dr Lenke since he did my first surgery but no one returns my call. Iím soooo frustrated!
    Rita Thompson
    Age 46
    Milwaukee Brace wearer for 3 years in childhood
    Surgery Mar 1st - 95 degree thoracic curve
    Surgery by Dr. Lenke, St. Louis, MO
    Post-surgery curve 25-30 degree

  11. #41
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    815
    That is really tough. It does seem if someone should return your call. Maybe it is time to move to a different doctor. Keep trying. It won't move quickly but try at a larger teaching hospital. Where do you live?
    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

  12. #42
    Join Date
    Jan 2019
    Posts
    18
    Quote Originally Posted by RitaR View Post
    Oh Kathy,
    I cannot tell you how bad the pain is! I just can bearly make it. The pain is so bad and just disabling. Iím almost to the point I canít stand it. Iím missing work. I come home from work and straight to bed. I wouldnít recommend this for anyone! I just donít know where to turn! I try to get ahold of Dr Lenke since he did my first surgery but no one returns my call. Iím soooo frustrated!
    Hi Rita,

    I am so sorry for your pain. I also had the same experience with Dr. Lenke and his team. I have moved on to another Dr. That I am hoping will help me and I pray you can find someone else soon as well. No one should live in pain. Best of luck to you.

    Lisa

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