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Thread: November 9th!!

  1. #16
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    Ed, excellent... I'm looking forward to your info, and great stories!

    Rohrer, yeah I definitely keep you updated with this.. Tribus seems like a nice guy, and has been genuinely concerned it seems. I think he's definitely taller than me right now, but yeah, after, probably not!

    In a bit I'll post some more from the surgical outline I received yesterday...
    Last edited by osumike; 09-03-2016 at 06:17 PM.
    Pre-surgery- 80°+ thoracic/ 60°+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  2. #17
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    Mar 2010
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    Mike,

    Since I've been seeing Tribus for such a long time I can tell you that he definitely has always had a good bedside manner and, at least with me, had a deep concern for making the right call (whether to or not to go ahead... part of his wishy washy attitude with me, I think).

    Just make sure you have a good pain management team for afterward. I have a friend who had surgery with him and he isn't good on following through on pain management. Since you are already on so much pain medication it might be a little trickier. That is a concern I have as well. I'm taking on average 50mg of oxycodone/day. You might want to discuss pain management ahead of time with your current pain med prescriber. I know Ed suggested going in clean... With some of us that just isn't possible, especially since you have only two months to go and are already taking quite a bit. Ideally, clean would be best, but not always. Please talk to your current doctor about this. Dr. Tribus isn't so understanding when it comes to pain management. He's probably seen too many people come out of back surgeries as addicts, which is understandable. I'm sure he doesn't want to be responsible for causing that.

    Just so you're not scared by this, he's NEVER said anything derogatory about my use of narcotics. I just know about the follow up care from my friend and another patient of his I talked to.
    Just a heads up.

    Take care,
    Rohrer01
    Last edited by rohrer01; 09-03-2016 at 04:48 PM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #18
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    Aug 2009
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    Wisconsin
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    Good to know, thanks. He actually did mention that he hoped I would allow him to take over pain management after surgery. I just saw my gp yesterday, and he only gave me enough refills to get me up to the surgery date. I see the gp one more time before surgery, so I'll have that discussion then. I am really looking forward to being off pills completely... At least hopefully. Need to make sure it's done properly though.
    Pre-surgery- 80°+ thoracic/ 60°+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  4. #19
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    Aug 2009
    Location
    Wisconsin
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    184
    And I've been struggling the last couple days with my decision to do this... I can't tell you how reassuring it is to hear you say how great he is, Rohrer. There's not too many "user reviews" that I've been able to find online.....
    Pre-surgery- 80°+ thoracic/ 60°+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  5. #20
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    Dec 2008
    Location
    illinois
    Posts
    927
    Mike it is a hard decision and even though I have had the surgery a part of me still isn't sure it was the right surgery at the right time. I thInk these things are hard. Make sure to ask all of your questions but try to find out what your inter most thoughts are. You are the one that has to know when the time is right.
    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

  6. #21
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    Mar 2010
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    Quote Originally Posted by osumike View Post
    Good to know, thanks. He actually did mention that he hoped I would allow him to take over pain management after surgery. I just saw my gp yesterday, and he only gave me enough refills to get me up to the surgery date. I see the gp one more time before surgery, so I'll have that discussion then. I am really looking forward to being off pills completely... At least hopefully. Need to make sure it's done properly though.
    Mike, that would be my "hope" as well. That is being off of all narcotics. My situation just doesn't lend for that. I have a very painful muscle disease so my only goal would be to get straightened up and my hypokyphosis pulled out. I don't have room to swallow because my spine is so close to my sternum and my stomach is twisted.

    I'm really shocked that he actually wanted to take over your pain management. He must be changing or REALLY wants to help you get off of the narcotics. He's usually hands off after the first two months or so. At least that's what I've heard.

    The head of neurosurgery at the large medical center near me raves about Dr. Tribus' work. He didn't quite understand why I wanted to see someone else this time. Honestly, it's because of the wishy washy-ness that he's had with me. But, like I've said, he doesn't know of the recent complications that I've had. I'm thoroughly convinced that he truly does care about his patients.

    I don't want to scare you but I've actually heard both ways with patient satisfaction. I've heard more on the positive than on the negative. The negative comment I got from a fellow forum member had a lot to do with pain and pain management. And like I said, my neurosurgeon has a very high regard for him and told me point blank that he's seen his work and it's very impressive. My friend loved him except for the pain management aftercare. She had a different problem and is/was using narcotics for years afterward.

    Sometimes people are left with pain and sometimes they aren't. My DIL had a T2-L1 (I think) fusion done when she was 16 by a different provider at our hospital here and only needed pain meds for about a month or so afterward. But pediatric cases are different than adults.

    My opinion is hope for the best, be prepared for the worst, and take what comes. Dr. Tribus' exact words to me were, "If you come in here with a constant 8 out of 10 pain and surgery leaves you with a 6 out of 10, you'll be happy. If you come in with a 4 out of 10 and are left with a 6 out of 10, you are going to be very unhappy with the surgery." At least he was being honest with me so my expectations aren't too high.

    I honestly did my research a little bit and compared OR length and degree of correction and was leaning toward going to Dr. Hey, but things fell through. Somehow that man does really complicated surgeries in three to six hours and rarely even needs to use the cell saver for blood loss. Dr. Tribus' OR time and blood loss is much more. However, Dr. Hey had some really negative and truly scary things said about him in patient reviews on the internet. I have not found anything like that with Dr. Tribus. Dr. Tribus is also working out of a hospital that is a level 1 trauma center should anything go wrong. Dr. Hey works out of a smaller hospital "near" Duke Medical Center but not affiliated with it. I've also seen Dr. Perra at Twin Cities Spine Center. He's supposed to be top-notch as well but had a horrible bedside manner when I saw him. And his nurse was just AWFUL to me. So I think they all have their strengths and weaknesses.

    I would feel comfortable going ahead with Dr. Tribus. My own scoliosis goes up into my neck and even though the curve isn't huge, I'm a one-of-a-kind which comes with its own risks as no one really has any experience operating on my curve type, that is no one that I've been seen by or talked to. Dr. Tribus said he gets a high thoracic curve every two or three years, well that includes me! So narrow that down. He didn't say how many he'd operated on. But he has been in practice doing scoliosis surgeries for 20+/- years. Although severe, your curve pattern is more typical and I'm sure he's had a lot of experience. He's one that doesn't like to do fusions on smallish curves like mine because of the pain outcomes.

    Sorry if I'm confusing you. I just felt like I wanted to justify why I'm choosing to get an opinion from someone else instead of sticking with Dr. Tribus. In all honesty I'm pretty sure that I'll end up going back to him whether I like and trust the new guy or not... for insurance reasons.

    Anyway, I wouldn't second guess your decision. You've been trying to get this done for YEARS and have finally found someone competent enough to do it. To be honest, I would have been a little afraid to go to Dr. Bridwell if I were you because of his age and your size. These operations take a lot of brute strength. Our pediactric scoli surgeon had to quit doing the surgeries on KIDS because she hurt her shoulder. She's not a small woman, either! I think you are in good, talented, and strong hands.

    I think your second guessing is nerves and fear of the unknown. You know how you feel now. You don't know how you will feel afterward. Only you can decide if you feel good enough to continue living the way you do. If you don't, there are a LOT of people here that have been through it. You have a lot of support here. I'm scared, too, and I don't even know if I'm healthy enough to even have surgery. I do know that the time has come that I do need it and it freaks me out, too!

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

  7. #22
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    Feb 2013
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    10
    Good Luck Mike! We are all there with you, please remember that! Gosh you are going to be tall! Love it!!! <3



    52 year old female
    Milwaukee Brace - 12 years to 16 years - T 35 L 32

    2016 T63 L 50
    Suggested surgery T4 - Pelvic
    Ant and Post

  8. #23
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    Jan 2016
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    Quote Originally Posted by rohrer01 View Post

    I've also seen Dr. Perra at Twin Cities Spine Center. He's supposed to be top-notch as well but had a horrible bedside manner when I saw him. And his nurse was just AWFUL to me. So I think they all have their strengths and weaknesses.

    Rohrer01
    Hi, Rohrer01......

    I'm just curious if you remember the name of Dr. Perra's nurse that was awful to you. I had surgery with Dr. Perra and am 10-weeks post op. I do not share your opinion regarding his bedside manner, but I know that everyone has their own experience. I actually like him and he treats me in a way that makes me feel confident about what is going on.

    But, I do share your opinion regarding his nurse. I have been with their team for about 18 months. In the beginning, his nurse was nice and as time has gone on, I have developed the opinion that she has no compassion for her job or his patients. She seems somewhat "proficient" at her job in that she does get around to answering my emails - but only when I follow up with a phone call saying "did you get my email?" More than once, she has made me feel like I am "bothering her". It's not just me - my husband also notices her attitude.

    On my 6-week post op check up, my husband was not in Minneapolis with me so my son took me. Mind you, he had never been to appointments with me so he was unaware of who or what anything was. Even HE noticed her attitude! On that particular day, the 4 of us were in the exam room and we were looking at the light up screen that had my xrays on it. I was asking Dr. Perra questions about my spine. I could see out of the corner of my eye that she was just GLARING at me. So, I shifted my eyes to meet hers and she immediately looked away. I have no idea what she was thinking at the time, but I feel really weird. Her name is Julie. It makes me feel like she doesn't like me (not that I care if she likes me or not) but I can honestly say, I'm not a "pain in the butt" patient. Most of my questions and issues I have after seeing them, I actually consult with my local orthoped. So, it's not like I'm constantly nagging them.

    I feel like he is a top-notch scoli surgeon and has a great reputation in the MidWest. He has always treated me with respect, but he is direct and to the point. He "tells it like it is" which is good for me personally. If someone is wishy-washy with me, I start thinking of all kinds of ways to get me out of a situation. But, for me, I needed surgery had he had the job of telling me that. I didn't like it, but I knew he was right.

    Anyway, I found your comment about his nurse interesting.

    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

  9. #24
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    Sep 2003
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    Quote Originally Posted by KathyInIowa View Post
    Hi, Rohrer01......

    I'm just curious if you remember the name of Dr. Perra's nurse that was awful to you. I had surgery with Dr. Perra and am 10-weeks post op. I do not share your opinion regarding his bedside manner, but I know that everyone has their own experience. I actually like him and he treats me in a way that makes me feel confident about what is going on.

    But, I do share your opinion regarding his nurse. I have been with their team for about 18 months. In the beginning, his nurse was nice and as time has gone on, I have developed the opinion that she has no compassion for her job or his patients. She seems somewhat "proficient" at her job in that she does get around to answering my emails - but only when I follow up with a phone call saying "did you get my email?" More than once, she has made me feel like I am "bothering her". It's not just me - my husband also notices her attitude.

    On my 6-week post op check up, my husband was not in Minneapolis with me so my son took me. Mind you, he had never been to appointments with me so he was unaware of who or what anything was. Even HE noticed her attitude! On that particular day, the 4 of us were in the exam room and we were looking at the light up screen that had my xrays on it. I was asking Dr. Perra questions about my spine. I could see out of the corner of my eye that she was just GLARING at me. So, I shifted my eyes to meet hers and she immediately looked away. I have no idea what she was thinking at the time, but I feel really weird. Her name is Julie. It makes me feel like she doesn't like me (not that I care if she likes me or not) but I can honestly say, I'm not a "pain in the butt" patient. Most of my questions and issues I have after seeing them, I actually consult with my local orthoped. So, it's not like I'm constantly nagging them.

    I feel like he is a top-notch scoli surgeon and has a great reputation in the MidWest. He has always treated me with respect, but he is direct and to the point. He "tells it like it is" which is good for me personally. If someone is wishy-washy with me, I start thinking of all kinds of ways to get me out of a situation. But, for me, I needed surgery had he had the job of telling me that. I didn't like it, but I knew he was right.

    Anyway, I found your comment about his nurse interesting.

    Kathy
    Yikes! If she is seeing every patient with Dr. Perra, it's no surprise that she doesn't have time to answer emails.

    --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

  10. #25
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    Jan 2016
    Location
    Sioux City, Iowa
    Posts
    116
    I agree Linda. She didn't sit in on every appointment so I'm not sure how that decision is made. But the last time was really weird!

    I've often wondered how she keeps up as she is the "clinical nurse" for 3 doctors. That's why I give her the benefit of the doubt when I have to follow up. I can't imagine how many patients she must deal with.

    I don't get too shook up about stuff like that. Dr Perra is a great surgeon & that's what matters to me!
    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

  11. #26
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    Mar 2010
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    Kathy, I will PM you as I don't want to derail Mike's thread. :-)
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  12. #27
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184
    Had my final pre-op appointment today. It's also been quite a wild week. I received a call last Monday, saying surgery was being postponed until June. Bone doc gave surgical clearance, but the surgeon said my bone density wasn't where he wanted it. Obviously this was extremely difficult to hear. Pretty much the same thing that happened in St Louis 6 years ago, except this time had a reschedule date.
    I met with the Dr on thurs, and we agreed to stick to the original schedule of Nov 9, and I was started on forteo, which I'll continue to take through recovery.
    On to today's meeting. It'll be a T3-sacrum fusion, osteotomy at L3, pelvic fixation. I've lost about ~4 inches of height. There's also plenty of auto fusion on my spine. Doc doesn't think he'll get much actual correction due to the auto fusion. Was told the plan is to rebalance my spine, meaning stabilize where I'm at now, and get me to the point where I can actually stand up straight, without strain, and if we get there, then that would be considered a success. I guess I never even considered that this huge procedure wouldn't result in me gaining some height back, having a straighter spine, or having a bit more "normal" looking torso. Thoughts?
    Pre-surgery- 80°+ thoracic/ 60°+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  13. #28
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    May 2008
    Location
    reno,nevada
    Posts
    4,227
    Mike

    This sure sounds like Ankylosing Spondylitis....Just a hunch.... People with “AS” autofuse and have osteoporosis.....Losing 4” is quite a bit....Hmmm....

    Autofusing on how many levels?

    Anyone mention anything about this?

    Your spine link isn’t working.....do you have a new x-ray you could throw up?

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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
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    Aug 2009
    Location
    Wisconsin
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    This is the most current pic I have.. I know it's not the best quality..
    Attached Images Attached Images
    Last edited by osumike; 10-31-2016 at 11:22 PM.
    Pre-surgery- 80°+ thoracic/ 60°+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  15. #30
    Join Date
    May 2008
    Location
    reno,nevada
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    Quote Originally Posted by osumike View Post
    Was told the plan is to rebalance my spine, meaning stabilize where I'm at now, and get me to the point where I can actually stand up straight, without strain, and if we get there, then that would be considered a success.
    He’s right. Your going to have to accept whatever happens.....it looks extremely painful. I understand your posts and your feelings....and your surgeons feelings....I was told I could be fused “as is” and any coronal correction should be considered as a bonus. Many decisions are made after they get in....

    I would ask if waiting for the Forteo to work is an advantage.....would a month or two help?

    It’s going to hurt Mike.....but it doesn’t matter when you need surgery. When I walked in, there was no turning back.....

    The IV meds are excellent.....when they knock you out, you wont feel a thing or remember much....They knocked me out every 4 hours for 10 days.

    If you need to talk, PM me.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

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