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Thread: I may be starting over with a New Doctor~~~whew!

  1. #16
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    May 2010
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    Quote Originally Posted by rohrer01 View Post
    When I saw Dr. Perra some 14 years ago, he was very thorough. However, he didn't seem to care AT ALL what kind of pain I had. I was in such pain at one visit that I could barely turn my head to look at him (severe neck pain and headache). When I asked him what I could do about it, he told me to take tylenol! I was thinking, "What the heck?" I have found that most, if not all, scoli doctors are like that about pain. They just want to deal with the mechanics of the stuff and if their fix doesn't work, you need to find another doc for pain. That's just my own experience. When I was a teen, however, there was one surgeon who did take some compassion on me and prescribed me a pretty powerful NSAID (when I went to the scoli clinic, I saw a different doc every time, so never really got to "know" any of them). I don't remember what it was, but it wasn't the usual stuff we hear about. It helped me through that episode.
    Well, the reason I am on what I'm on, is because I'v been with a pain specialist for a few yrs. two hrs. from here. It got to be the pits driving there once a month for refills(that's the rules) so my general practitioner is doing the pain meds. here where I live. I don't want Perra to give me anything for pain except surgery. I don't want to take anything stronger because I am on very strong meds.(also have fibromyalgia) I take neurontin along with a strong narcotic. And what I hate about taking so much stuff for this long, is it gets harder to control the pain. I'v been at this since about six years as far as surgeries and pain meds. It was the first surgery in 2006 that caused flatback syndrome and onset of adult scoli. And then the one in 2010 started the ball rolling for a worse condition called sagittal imbalance and flatback. In otherwards it failed and three months later they tried it again (same surgeon)and failed again. I truley believe because they didn't do any anterior surgery on me. (And only one small oteotomy w/ fusion T3 to pelvic) Anyway, that's kind of the feeling I got about Perra when it came to the pain also. He just didn't seem to care. And expected this to be alright for several months . And then didn't say one way or the other if he planned to do this surgery-just that he'd see how my bone density is. Sorry this got so long-whew! I think what I take for meds. should cover most pain. That concerns me. I'v delt with some bad pain-but this is rediculous. All my best 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

  2. #17
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    Mar 2010
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    2,755
    Linda,
    I haven't had scoli surgery or any kind of back surgery, for that matter. I have been on and off some very powerful meds for the last 14 years because my scoli is a very unique and PAINFUL kind of scoli to have. Unfortunately for me, the scoli docs seem to only look at numbers (as in Cobb angles) instead of the whole person and how this affects my life. I agree with you about the pain meds. Currently I'm 'only' on percocet and klonopin and baclofen for pain and muscle spasms. Oh, I have Ultram, too, but that is pretty much useless on severe pain. If you want to read MY pain chronicles, I believe it's under the subheading "I have some imaging CD's" in the nonsurgical section. I chronicled my way off of fentanyl, percocet, klonopin and maybe soma at the time. I can't remember. Anyway, pain is my life. I'm up right now because I'm in too much pain to sleep. I have to get to the doc ASAP tomorrow to see if there is anything they can do. I had it under control, I thought, and then I fell on Thursday. I fall way more than a 43 year old should fall. I actaully got knocked off balance by my grandson and went splat, right in the hospital lobby. Of course, I jumped up right away and acted like nothing happened. It took a couple of days for the severe muscle spasms to set in and it just keeps getting worse! Sorry to drone on. I'm sure you are in MUCH worse shape than me. I still don't know why they are afraid of taking that screw out. I read your explanation and just don't buy your docs answer. If it's infection he's afraid of, then he'd better get that thing out! It would probably make you feel at least a little better, too, while you wait. I certainly hope you can get in to see someone soon. Have you called Lenke's office, yet? Oh, I don't know if Perra has the same nurse or not, but the one he had when I saw him was very, very MEAN to me. Why do they have to be that way? Aren't we suffering enough? It makes me wonder why some of these guys go into this field.... I'm just rambling.

    Take Care,
    Rohrer01

  3. #18
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    May 2010
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    Nurse

    Quote Originally Posted by rohrer01 View Post
    Linda,
    I haven't had scoli surgery or any kind of back surgery, for that matter. I have been on and off some very powerful meds for the last 14 years because my scoli is a very unique and PAINFUL kind of scoli to have. Unfortunately for me, the scoli docs seem to only look at numbers (as in Cobb angles) instead of the whole person and how this affects my life. I agree with you about the pain meds. Currently I'm 'only' on percocet and klonopin and baclofen for pain and muscle spasms. Oh, I have Ultram, too, but that is pretty much useless on severe pain. If you want to read MY pain chronicles, I believe it's under the subheading "I have some imaging CD's" in the nonsurgical section. I chronicled my way off of fentanyl, percocet, klonopin and maybe soma at the time. I can't remember. Anyway, pain is my life. I'm up right now because I'm in too much pain to sleep. I have to get to the doc ASAP tomorrow to see if there is anything they can do. I had it under control, I thought, and then I fell on Thursday. I fall way more than a 43 year old should fall. I actaully got knocked off balance by my grandson and went splat, right in the hospital lobby. Of course, I jumped up right away and acted like nothing happened. It took a couple of days for the severe muscle spasms to set in and it just keeps getting worse! Sorry to drone on. I'm sure you are in MUCH worse shape than me. I still don't know why they are afraid of taking that screw out. I read your explanation and just don't buy your docs answer. If it's infection he's afraid of, then he'd better get that thing out! It would probably make you feel at least a little better, too, while you wait. I certainly hope you can get in to see someone soon. Have you called Lenke's office, yet? Oh, I don't know if Perra has the same nurse or not, but the one he had when I saw him was very, very MEAN to me. Why do they have to be that way? Aren't we suffering enough? It makes me wonder why some of these guys go into this field.... I'm just rambling.

    Take Care,
    Rohrer01
    Perra's nurse has a problem. We have gone around and round a few times. She tells me EVERY time I call that Perra is gone for a week or has been gone for a week. It's always her excuse for not being able to talk to him for me!! I told her today that all I'd like is for him to taske the screw out before it passes through my skin. She didn't hear a word I said about that and she went on and on why he won't do the BUG surgery. Like a broken record I might add. Finially I got it through her head that I just want the screw out at least. And she said she would run this by him~~~if he ever gets back~~~from where-ever he is. I should just go ahead and call Lenke and quite messing with Perra. I'm doing this mainly for my hubby. But we'll see. So sorry to hear you have such pain obstacles to deal with! It is a bad deal. Why won't they do surgery on you? I missed something. Sounds so painful! I will have to have a pain team after the big surgery and I don't know if Perra will follow through and help to make sure this is done. It's so impotant I have these things.
    I feel so bad about your pain. I know how it grinds on a person day afrer day.
    God Bless~~~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

  4. #19
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Linda,

    I am so sorry to hear of your troubles, and that is inexcusable to be treated by the nurse like that.

    Please, call Lenke. Your husband will be ok there. St Louis is a really nice city, and Barnes is outside the downtown urban core. It is not difficult to get around, and the traffic is not heavy or scary. And you MUST get that screw removed before it erodes through your skin, because if it does you will wide open for a major hardware infection.

    Best wishes,
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  5. #20
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    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    my 2 cents

    Quote Originally Posted by leahdragonfly View Post
    Linda,

    I am so sorry to hear of your troubles, and that is inexcusable to be treated by the nurse like that.

    Please, call Lenke. Your husband will be ok there. St Louis is a really nice city, and Barnes is outside the downtown urban core. It is not difficult to get around, and the traffic is not heavy or scary. And you MUST get that screw removed before it erodes through your skin, because if it does you will wide open for a major hardware infection.

    Best wishes,

    Why are you waiting for Dr Perra to decide what happens with the rest of your life?
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  6. #21
    Join Date
    May 2009
    Posts
    3,745
    hi Linda
    just wanted to second what Kristy just wrote...

    it is YOUR life...no one will suffer...bottom line...but you...with whatever decisions are made...
    so why not take charge and make the decisions yourself...choose your surgeon and how you
    are treated...
    i would not hesitate to call another surgeon...
    you should not have to put up with staff that treats you that way...
    i know sometimes patients take a lot to get to see a certain doctor...
    but enough is enough!!
    and it seems time is not on your side with what is needed for the screw problem...

    jess

  7. #22
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    May 2010
    Posts
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    You are sooo right~~~

    Quote Originally Posted by naptown78 View Post
    Why are you waiting for Dr Perra to decide what happens with the rest of your life?
    Naptown78, You are so right on about this. I have to take charge. My surgeon that is local and took the last lose screw out, dictated a letter to Dr. Lenke and it should have gone out Friday. He will be getting other stuff together also. This is to see if Lenke will take me on as a patient, as I heard he's hard to get into. But considering my case, I am hoping! The skin around the screw must have broke, as it is seeping. So I will call Dr. Alvine , my local surgeon, Mon. morning. He is the one helping me get into Lenke. I am really wore out from all this stress and pain. Best wishes to you~~~hope you're doing well!
    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

  8. #23
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    All the very best Linda. I hope you can get this distressing situation resolved asap.
    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. #24
    Join Date
    May 2009
    Posts
    3,745
    sounds like the smartest thing to do...
    best of luck...
    i am so sorry for all the stress, but it will be worth it if Lenke becomes your surgeon...

    jess

  10. #25
    Join Date
    Mar 2010
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    If the skin around your screw is seeping, isn't that a medical emergency? I'm not trying to scare you, but your skin is your barrier to infection. Once that is breeched, all kinds of microbes can get in there. I hope your local surgeon gets that screw out ASAP. I would definitely recommend calling his office first thing tomorrow, as soon as they open, or even showing up there at the office. Maybe I'm too paranoid, but I'd hate to see you get an infection because of this, AND I'd hold Perra accountable if you do. It sounds like he has the same NASTY nurse that he had when I saw him. Why does she even keep her job? I can see a brilliant surgeon being very dry and lacking bedside manner, as many brilliant people lack social skills, but nurses are a dime a dozen. Sorry, not trying to pick on any nurses out there, but y'all know what I'm saying. Best wishes to you to get something done ASAP. I sure hope Lenke takes you on! It sounds like your case is right up his alley!

    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  11. #26
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    May 2010
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    345

    Thanks~~~

    Quote Originally Posted by rohrer01 View Post
    If the skin around your screw is seeping, isn't that a medical emergency? I'm not trying to scare you, but your skin is your barrier to infection. Once that is breeched, all kinds of microbes can get in there. I hope your local surgeon gets that screw out ASAP. I would definitely recommend calling his office first thing tomorrow, as soon as they open, or even showing up there at the office. Maybe I'm too paranoid, but I'd hate to see you get an infection because of this, AND I'd hold Perra accountable if you do. It sounds like he has the same NASTY nurse that he had when I saw him. Why does she even keep her job? I can see a brilliant surgeon being very dry and lacking bedside manner, as many brilliant people lack social skills, but nurses are a dime a dozen. Sorry, not trying to pick on any nurses out there, but y'all know what I'm saying. Best wishes to you to get something done ASAP. I sure hope Lenke takes you on! It sounds like your case is right up his alley!

    Rohrer01
    You are so right about that nurse. And I love how you describe so many brilliant people lacking the social skills! How true~~I truley don't care if my Dr. is a mushy-gushy person~~in fact I would be suspicous of him! Anyway, I hope Lenke will see me. I am waiting to hear from my local surgeon right now. I will keep you posted. Thanks so much for your reply!! boomer(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

  12. #27
    Join Date
    Jul 2011
    Posts
    535
    Quote Originally Posted by babyboomer16 View Post
    Anyway, I hope Lenke will see me. I am waiting to hear from my local surgeon right now. I will keep you posted. Thanks so much for your reply!! boomer(Linda)
    Would it help move things along faster if you called Lenke's office today 314-747-2538 to at least get an appointment and let Naomi (scheduling nurse) know that your local surgeon has sent documentation. In fact, ask for Lenke's fax # and have your local surgeon fax the info too (I wouldn't wait for snail mail). This way, if your local doc has any pull with Lenke, hopefully, your appointment will be bumped up. I really think you are in a critical situation at this point.

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  13. #28
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Linda,

    I just cant believe the bad luck you have had with all of this.....Iím so sorry. It sure looks like this is one of those times where one needs to move on.....I hope that the urgency of the situation is relayed to Dr Lenke. I think he will respond accordingly......

    Hang in there, soon you will be fixed.

    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

  14. #29
    Join Date
    Jul 2011
    Posts
    535

    Dr. Lenke is Seeing New Patients within Weeks of Calling for Appointment!!!!

    Quote Originally Posted by babyboomer16 View Post
    Anyway, I hope Lenke will see me. I am waiting to hear from my local surgeon right now. I will keep you posted. Thanks so much for your reply!! boomer(Linda)
    Hi Linda,

    I just heard from a fellow scoli sister who called Dr. Lenke's office on Friday and was scheduled to see him mid-April. Please, please do not delay in calling Dr. Lenke!!!!

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  15. #30
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    I can only repeat what others have said. Please call Dr. Lenke's office to follow up on the letter your Dr. sent. Maybe he would have an immediate recommendation about the screw removal before dealing with the other issues. He's a kind and extremely talented surgeon. I hope you can see him soon. My thoughts and prayers are with you!
    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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