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  1. #1
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184

    November 9th!!

    Now it's really real.. I made the call this morning to schedule surgery, and it's happening in a little over two months. Crazy, I never thought it would actually happen. I'm super excited to think my pain might be gone, and definitely terrified of the whole thing. I keep thinking about how I'll feel after surgery, when I'm just laying there hurting, and what that's going to feel like.

    I still need to get pre-op clearance from my gp, and the cardiologist, but I have no reason to believe that will be an issue. I also need to go give blood prior to surgery. The surgeon, Dr. Tribus(pronounced Trib-you), anticipates a 10 hour surgery, and thinks I'll stay in the hospital for 5-7 days post-op, before being moved to an in-patient rehabilitation center for up to six weeks. I'll be using a tilt table there. It's like a flat padded table that they'll strap me to, and then the whole table tilts up to get me in the standing position so I can get upright and walk. He said this is used so I don't bend at the waist when getting up out of bed.

    I don't have any current x-rays in my possession to post on here, but I may by the end of the week. Well actually I took a picture of a computer screen that had my x-rays up, I'll put that up here for now. I didn't even ask about curvature degrees, I just know it's progressed, at least the pain is telling me it has. It's really affected my work lately, which is very frustrating.

    I mentioned in that old thread that the genetic testing came back negative for Marfans, but as Sharon said, there's a pretty large margin of error to that test, and that doctor isn't completely convinced because I do show some of the symptoms. As long as I stay diligent and get yearly checks on my heart, I should be fine.

    I'll post more as this thing moves along....
    Last edited by osumike; 09-06-2016 at 07:33 PM.
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  2. #2
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,272
    Congratulations on setting the date. Big step forward.

    Like I told my girls, surgery isn't about regaining a normal spine. That is off the table. It is about cutting your losses and leading a normal life.

    There is at least a 90% chance that you don't have Marfan's. But even if you do, it doesn't matter because you know to keep monitoring your aorta. That is the entire game here in terms of Marfan's patients having a normal life span. The people who die young didn't know they had it and so weren't monitoring their aortic dimensions. These deaths are entirely preventable.

    Good luck and great fortune going forward, Mike.
    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."

  3. #3
    Join Date
    Jan 2016
    Location
    Sioux City, Iowa
    Posts
    116
    Congratulations, Mike!

    I remember vividly the day I called and said "sign me up for surgery." I couldn't believe I had actually made the call when I hung up. But, I felt the same as you - as was super scared, but at the same time I was excited to think that I could actually walk without being in terrible pain after 2 steps!

    I had been reading the forum for 18 months prior to setting my surgery date. I will say, reading these posts gave me a lot of self confidence. I kept thinking "if all these people have done it, then I can do it." I remember reading a post that said "there are 3 things that are essential for preparing for surgery:
    1. Learn as much as you can about the surgery and recovery
    2. Get in the best physical shape as possible
    3. Trust your surgeon.

    I did all 3 of those items and it helped me immensely. I think the #1 thing for me was that I 100% trusted my surgeon, and I 100% trusted myself to do whatever was necessary to a good outcome/recovery.

    You can do this and I wish you all the luck!

    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

  4. #4
    Join Date
    Mar 2013
    Location
    Chaska, Minnesota
    Posts
    41
    Mike,

    Congrats on making the leap to schedule your big day! The next two months will likely creep by as you wait and worry. The only advice that I can provide is to prepare yourself for the long road ahead. I am only 4 weeks post op, so don't have as much to offer as others on this board, however, I do feel like I did a good job of getting my affairs in order. I made sure that I was in a good place with my workload and co-workers; stocked my freezer full of meals from Let's Dish; ordered supplies that I knew I would likely need at the house such as a shower chair, toilet seat lift, grabber gadget, etc. Preparing helped to occupy my mind and gave me something to do.

    It's interesting how different the recovery period is approached by different doctors. I had a 9 hour surgery and was in the hospital for 6 days but then went right home. No after care facility or fancy bed to get me upright, though the bed sure would have been handy! They had me standing upright within 12 hours of my surgery and was walking, climbing stairs and learning to put my socks on all within the first 3 days post op. It seemed aggressive at the time and it was honestly the hardest week of my life, but I understand why they pushed.

    Ask as many questions of the group as you need!

    Misty
    • 42 yr old female
    • Diagnosed at 13yo w/ a 32* lumbar curve at Gillette Children's Hospital
    • Braced for two-years
    • Pre-surgery curves L55, C37
    • Surgery scheduled August 1, 2016 to fuse T6-L5
    • Dr. Jeffrey Dick, Twin Cities Orthopedics
      Post-surgery curves L24, C21



  5. #5
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184
    Some random thoughts as I stare into this forum again...
    It's bringing back memories from 6 or so years ago, when my journey began to find out why I was in so much pain, and I found this forum, and spent countless hours reading. Today while I was at work, out of nowhere, and for no apparent reason, I got a horrible shooting pain run thru my right shoulder and into my neck. I made a noise out loud because it hurt so bad. I had to go home early, and I've been laying in bed with a heating pad for the past 8 hours. Not sure what that was all about. It's really nice to see the same people(Ed, Linda, several others) still on here giving advice and opinions and support to all the new members looking for answers.. I know that helped me tremendously.

    I'm so worried about what's going to happen after surgery, mostly with work. There's no chance I'm NOT going through with this surgery, because I NEED this to happen for quality of life reasons. Pain levels are getting out of control, and I really don't want to up the pain meds I'm currently taking. 10mg percoset, 60mg morphine, and a muscle relaxer twice daily, and occasionally an extra percoset if I need it. A few months ago I quit taking Paxil. That was a little weird, with the brain zaps.

    Definitely looking forward to post-op though. I was reading through all the posts earlier about what to have at home after surgery, but I'm thinking I won't need most of that, as I'll be in an inpatient rehabilitation center for possibly six weeks.

    I've been searching here for anyone that has been operated on by Dr Tribus, but can't find much. Anyone reading this have experience with him? Either way, the meetings I've had with him were good, great actually. Seems very knowledgeable and confident in what he can do for me. I can't wait to see the outcome.
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  6. #6
    Join Date
    Mar 2013
    Location
    Chaska, Minnesota
    Posts
    41
    Quote Originally Posted by osumike View Post
    I'm so worried about what's going to happen after surgery, mostly with work. There's no chance I'm NOT going through with this surgery, because I NEED this to happen for quality of life reasons. Pain levels are getting out of control, and I really don't want to up the pain meds I'm currently taking. 10mg percoset, 60mg morphine, and a muscle relaxer twice daily, and occasionally an extra percoset if I need it. A few months ago I quit taking Paxil. That was a little weird, with the brain zaps.
    Mike,

    I was most concerned about the surgery and recovery impacting my career as well! Though when you will go back to work really depends on what you do for a living and how flexible your employer is. I am lucky in that I am fully commissioned real estate broker so I make my own hours and can do A LOT of work from my home office. 9 days post op I was answering a few critical emails and even conducted a conference call. Today is 4 1/2 weeks post op and I have been to the office for the past week. It has been very draining, but really good to get back into a routine. This is probably aggressive for most people, but when you eat what you kill, you tend to push a little harder. I have the luxury of a wellness room to lie down in if I need to when I'm at the office, and I have the furthest thing from a labor intensive job, so that all comes into play. If you have an office job as well, I think it is reasonable to imagine going back as soon as you feel ready.

    You are on pretty heavy doses of pain meds already! Wow! How does that affect your job now? Hope your neck pain goes away quickly.

    Misty
    • 42 yr old female
    • Diagnosed at 13yo w/ a 32* lumbar curve at Gillette Children's Hospital
    • Braced for two-years
    • Pre-surgery curves L55, C37
    • Surgery scheduled August 1, 2016 to fuse T6-L5
    • Dr. Jeffrey Dick, Twin Cities Orthopedics
      Post-surgery curves L24, C21



  7. #7
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Good luck with your surgery mike
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  8. #8
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184
    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

  9. #9
    Join Date
    Mar 2010
    Posts
    2,748
    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!

  10. #10
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184
    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

  11. #11
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    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

  12. #12
    Join Date
    Mar 2010
    Posts
    2,748
    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!

  13. #13
    Join Date
    Feb 2013
    Posts
    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

  14. #14
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    mike good luck
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  15. #15
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Best of luck, Mike, for a successful surgery and a smooth recovery. The recovery is not easy, however, I was so much less stressed after the surgery that it was a better time for me than the weeks before.
    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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