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Thread: Waiting!! Waiting!! Old surgeon is readt to step in! Help!!

  1. #1
    Join Date
    May 2010
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    345

    Waiting!! Waiting!! Old surgeon is readt to step in! Help!!

    Hi all,
    I think you all know my story~~~except maybe the latest where I sent my records to Dr. Lenke. Or rather my local surgeon sent them. Now is the waiting . I am waiting to hear from Dr. Lenke's nurse. She said he is swamped with paper work, as he has been gone for three weeks. But my local nurse talked to her and said he "first" has to decide if I am eligable to have him as a surgeon . I guess that means if my case is serious enough. And she said if I qualify for surgery with him, I may be able to get in the middle of May for a consultation. And if he decides to do the surgery, it will be a nine to ten month wait. Now, this was between the two nurses. I think I am serious enough, but will Dr. Lenke. She also said he sometimes gives his cases to one of his colleages. I want Dr. Lenke to do this. I know that I feel after after two yrs. of saggital imbalance and flatback syndrome, I am exhausted from being bent over and not being able to walk without pain. The excurciating pain is better since my local surgeon took the screw out.(L4 L5) But there's another one poking me down in that area, or it's a rod. I was told the rod was broke in my pelvic area.Do you that have read about me think I qualify? I need some input here? I know I am going to have to be patient~~~and that's terrible hard when I am suffering symtoms that , if I were a dog, they would put me out of my mysery. And that truly sounds like a pity party,(sorry) but that's how I feel sometimes. I have no quality of life anymore. I have missed so many important events in my life for so long, "and we can't have those back." Life just keeps passing me by, and at this age , time is so impotant. When a year passes and the Drs. still havn't done anything, it is too long to wait. Another and another, it starts to wear on me and everyone around me. But anyway, thanks for letting me vent. I truly am glad that this forum is here. I'm wishing all of you healing thoughts, so you too can have that quality of life we so long for. Linda P.S. My original surgeon(Dr. Haft), that did the two revisions on me in 2010, said he would be willing to go ahead and do another surgery on me, but go through the front also this time. My question is why didn't he go through the front the first two surgeries he did on me? He only did a posterior. Anyway, I thought it rather odd~~
    Last edited by babyboomer16; 04-11-2012 at 03:38 PM.
    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. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Linda...

    It appears that while Dr. Haft occasionally treats adults, he is primarily a pediatric surgeon. Since kids only occasionally need circumferential fusions, I'm sure it's not something that Dr. Haft does routinely.

    I don't think you're seriously considering it, but I would definitely discourage you from letting him take a 3rd shot at it.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
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    Quote Originally Posted by LindaRacine View Post
    Hi Linda...

    It appears that while Dr. Haft occasionally treats adults, he is primarily a pediatric surgeon. Since kids only occasionally need circumferential fusions, I'm sure it's not something that Dr. Haft does routinely.

    I don't think you're seriously considering it, but I would definitely discourage you from letting him take a 3rd shot at it.

    Regards,
    Linda
    I won't give him a third shot at it. I think I just have to sit back and be as patient as I can, and wait for Dr. Lenke's opinion. He has a very good reputation in this type of surgery. Don't you agree? I am just having one of those days!!!
    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. #4
    Join Date
    Mar 2010
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    2,755
    Quote Originally Posted by babyboomer16 View Post
    I won't give him a third shot at it. I think I just have to sit back and be as patient as I can, and wait for Dr. Lenke's opinion. He has a very good reputation in this type of surgery. Don't you agree? I am just having one of those days!!!
    Here I was thinking that Dr. Perra had finally come around! lol...not funny, I know. But that's what I was thinking when I read your post. I would not give a doctor a 3rd shot at my back if he's had two tries already. I see a recipe for disaster there, especially if he usually does pediatrics. They are much different than adults. When I saw the head of neurosurgery here, he explained why. We have a local surgeon that does kids all of the time, but won't touch adults. That's because we adults come with a unique set of circumstances that go along with the territory of an aging spine. We are not as flexible, have arthritis, bad discs, etc... You get the picture. They end up doing things like putting in cages and doing oseotomies and such. These things just don't come up in pediatric surgeries, usually. So the surgeons aren't going to be as experienced in such things as Linda had said. I would wait for Lenke's call, but be looking for a back-up just in case he doesn't pull through for you.

    Wishing you all the best.
    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #5
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi...

    Yes, I agree that Dr. Lenke is great. Hopefully, he won't feel the need to pass you along to a colleague. If that happens, and you want to reconsider coming to UCSF, I don't think you'd be disappointed.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  6. #6
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    Quote Originally Posted by rohrer01 View Post
    Here I was thinking that Dr. Perra had finally come around! lol...not funny, I know. But that's what I was thinking when I read your post. I would not give a doctor a 3rd shot at my back if he's had two tries already. I see a recipe for disaster there, especially if he usually does pediatrics. They are much different than adults. When I saw the head of neurosurgery here, he explained why. We have a local surgeon that does kids all of the time, but won't touch adults. That's because we adults come with a unique set of circumstances that go along with the territory of an aging spine. We are not as flexible, have arthritis, bad discs, etc... You get the picture. They end up doing things like putting in cages and doing oseotomies and such. These things just don't come up in pediatric surgeries, usually. So the surgeons aren't going to be as experienced in such things as Linda had said. I would wait for Lenke's call, but be looking for a back-up just in case he doesn't pull through for you.

    Wishing you all the best.
    Rohrer01
    Rohrer01, I thank-you for explaining that to me. It makes more sense when you put it like that about the first surgeon and pediatrics. My back up would be Perra. Although when I left his office in March, he didn't have me make an appt. or anything. He wrote me a letter saying I needed to take the forteo "three months or more" and that he knew I am in a very difficult situation. I had already taken it 6 months. They havn't called or anything. And like I say, there wasn't any mention of a follow up appt. The forteo had done nothing in the six months I took it. I am still taking it. It's a fairly new drug and it's like guessing who it will help or not. He told me that my second dexa scan was on a different kind of machine, and the readings were hard to decifer. I think Dr. Perra is a good surgeon, but I think in my situation, I need Lenke. It's most because Lenke does a lot of the TLIF , which is going around to the front from the back.(you may have to correct me on that) And since I am compramised in that area(stomach) I would think he would be the best one to do my surgery. They acually go low enough not to bother my stomach. Anyway, I will have to be patient.
    Thanks for your input. It means alot to me. I will keep you posted!! 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

  7. #7
    Join Date
    May 2010
    Posts
    345
    Quote Originally Posted by LindaRacine View Post
    Hi...

    Yes, I agree that Dr. Lenke is great. Hopefully, he won't feel the need to pass you along to a colleague. If that happens, and you want to reconsider coming to UCSF, I don't think you'd be disappointed.

    Regards,
    Linda
    I would love to come see you, and may have to re3consider my options if Lenke doesn't come across! It's 14 hrs. to St. Louis. What town are you in again? I have a terrible memory! I guess flying may be an option. I'm keeping the option open~~~ Thanks for caring~~~
    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. #8
    Join Date
    Mar 2010
    Posts
    2,755
    Hi. It's me again. Sorry I'm not Linda Racine, but UCSF stand for University of California San Fransico. So I'm going to make the assumption that she is in San Francisco, California. It's really beautiful there, by the way.
    Last edited by rohrer01; 04-15-2012 at 04:46 PM. Reason: spelling!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #9
    Join Date
    Apr 2012
    Location
    Harrisburg, Pa.
    Posts
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    Waiting!!!! Waiting!!!!!

    Hi...This is yacpatty....I think I am going to have to change my username..ha..Anyway, I have done a lot of research on the internet and feel like if I am ever to have revsion surgery, from what I have read, I would opt for Dr. Lenke. Like you, I am 14 hours from St Louis so I don't know how we will work that out logistically if and when I get the nerve to have surgery. Anyway, I hope you keep us posted on your success with Dr. Lenke and I will include you in my prayers for a good outcome. I am almost 50 years post-op at the almost age of 61....fused T2-L4. I have been in chronic pain for 26 years and getting progressively worse. Like you, I feel like my quality of life diminshes by the day but yet, I keep putting off surgery and hoping another epidural will give me more time. Our cases are different and I hope Dr. Lenke sees the urgency for your surgery due to the intense pain you are eperiencing with the flatback and the screw that is giving you so much discomfort. Keeping you in my prayers and keep us posted. I am anxious to hear another good report regarding Dr. Lenke. I will pray he slips you through and you wont have to wait another 6-9 months.

    Pat

  10. #10
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416
    Hi Boomer,
    I've been in your shoes with the sagittal imbalance and I know the pain and disability you are going through. Its the type of thing that is hard to
    explain to someone unless they have been through it themselves. When your spine in unable to straighten up it affects your hips and your knees as well as your neck. The fatigue is unending. I'm so sorry you have not been able to find help by now. I pray that Dr Lenke will be able to help you , and soon. Of course, I believe you would qualify based on your description of all you have been through. Maybe you could get on a cancellation list if it is true that there is a 10 month wait. I agree with Linda, that maybe UCSF could be your backup plan. They seem to work miracles out there too ;-). You truly deserve a miracle and my heart aches for you every time I read your posts. You are in my prayers.
    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.

  11. #11
    Join Date
    May 2010
    Posts
    345
    Quote Originally Posted by naptown78 View Post
    Hi Boomer,
    I've been in your shoes with the sagittal imbalance and I know the pain and disability you are going through. Its the type of thing that is hard to
    explain to someone unless they have been through it themselves. When your spine in unable to straighten up it affects your hips and your knees as well as your neck. The fatigue is unending. I'm so sorry you have not been able to find help by now. I pray that Dr Lenke will be able to help you , and soon. Of course, I believe you would qualify based on your description of all you have been through. Maybe you could get on a cancellation list if it is true that there is a 10 month wait. I agree with Linda, that maybe UCSF could be your backup plan. They seem to work miracles out there too ;-). You truly deserve a miracle and my heart aches for you every time I read your posts. You are in my prayers.
    Thak-you naptown~~~for your kind words!Your prayer must have worked, as I just received a phone call from Dr. Lenke's nurse. She had an opening for May 16th and I took it. It's for a consultation. I am so happy and relieved that I finially got an appt. with him! I can relax a little an make plans! Thanks again~~and I know you understand, as I remember when you were goimg through the whole thing. Hope you are doing well now! Boomer
    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. #12
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    So glad that you got an appt. Hope it goes well
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  13. #13
    Join Date
    Jul 2011
    Posts
    535
    Quote Originally Posted by babyboomer16 View Post
    Thak-you naptown~~~for your kind words!Your prayer must have worked, as I just received a phone call from Dr. Lenke's nurse. She had an opening for May 16th and I took it. It's for a consultation. I am so happy and relieved that I finially got an appt. with him! I can relax a little an make plans! Thanks again~~and I know you understand, as I remember when you were goimg through the whole thing. Hope you are doing well now! Boomer

    I'm doing the happy dance for you!! Wooo Hooooo!!!! I think there'll be a party in STL the evening of May 15 (assuming you arrive the day before your appointment). We'll have to get together with you and Karen aka golfnut

    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/

  14. #14
    Join Date
    Mar 2010
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    2,755
    That is great news!!! I was a little worried that you would get desperate and go back to your old surgeon, but only briefly. ;-)
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  15. #15
    Join Date
    Aug 2011
    Location
    Indiana
    Posts
    104

    St. Louis visit

    Quote Originally Posted by Doreen1 View Post
    I'm doing the happy dance for you!! Wooo Hooooo!!!! I think there'll be a party in STL the evening of May 15 (assuming you arrive the day before your appointment). We'll have to get together with you and Karen aka golfnut

    Warmly,
    Doreen
    Well I will get St. Louis all ready for your arrivals. My 1 yr post-op appt. is May 14th! Hope that week goes well for everyone!
    Donna
    Female - 49 yrs old at surgery
    Surgery 5/5/11 - Dr. Bridwell, St. Louis
    Fused T3-L3
    60 degree thoracic curve corrected to 30 degrees
    Tennis player & returning to the courts!
    http://s1050.photobucket.com/profile/walkingmom1/index

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