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Thread: Need Answers!

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

    Need Answers!

    Went to see Dr. Orr today. I was told IF he were to operate on me, it would require a fusion from T3- Pelvis. Holy crap. He acts like he doesnt want me to do it yet because I dont act like its "bad enough" yet. Basically said im only 30, and the way this would change my life should wait as long as possible. Does this make sense? My curves are DEFINATELY progressing, so I guess he's leaving the decision up to me. Said he didnt think I'd be able to go back to work at my current job, that if I can continue taking "reasonable amounts" of pain meds, (10 mg. percosets), that maybe I should think about holding off.

    Also, the MRI showed that I have 2 cysts somewhere around my pelvis. Anyone else? That if I were to say, fall and burst one of them, it would be tremendous pain for a few weeks. I know, I dont exactly have all the terminology here, but when I get the written report Ill update this.

    I need to hear from those of you that have had such long fusions. What can and can't you still do? Titanium Ed, Im pretty sure you can still ski, right? Theres no way I can put this off. Im 30. This daily pain has been dealt with for 15 years now.
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Quote Originally Posted by osumike View Post
    Went to see Dr. Orr today. I was told IF he were to operate on me, it would require a fusion from T3- Pelvis. Holy crap. He acts like he doesnt want me to do it yet because I dont act like its "bad enough" yet. Basically said im only 30, and the way this would change my life should wait as long as possible. Does this make sense? My curves are DEFINATELY progressing, so I guess he's leaving the decision up to me. Said he didnt think I'd be able to go back to work at my current job, that if I can continue taking "reasonable amounts" of pain meds, (10 mg. percosets), that maybe I should think about holding off.

    Also, the MRI showed that I have 2 cysts somewhere around my pelvis. Anyone else? That if I were to say, fall and burst one of them, it would be tremendous pain for a few weeks. I know, I dont exactly have all the terminology here, but when I get the written report Ill update this.

    I need to hear from those of you that have had such long fusions. What can and can't you still do? Titanium Ed, Im pretty sure you can still ski, right? Theres no way I can put this off. Im 30. This daily pain has been dealt with for 15 years now.
    Hi Mike...

    Since there's already the need to fuse to the pelvis, it's pretty common to encourage the patient to put it off as long as possible. Being fused to the sacrum will definitely limit your flexibility. I can't remember if Ed is fused to the sacrum or pelvis, but I'd definitely encourage others who have long fusions to the sacrum or pelvis to chime in.

    Regards,
    Linda

  3. #3
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Mike, I'm fused to the pelvis and frankly I don't "get" why doctors seem to want to put it off as long as possible. It really isn't a big deal. Flexibility is affected, but there seems little I can't do and other things I do differently. I don't look like a tin soldier, I can still bend but I do it with a straight back, using my hips and knees.

    To me the trade off for any loss of flexibility is easy: a pain-free existence. I'd have given up much more to have that!

    Ask any questions you want.
    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

  4. #4
    Join Date
    Apr 2007
    Location
    Sydney
    Posts
    249
    65* thoracic/ 55* lumbar progressing with pain and he sais to wait!

    I would consult another surgeon.
    45L/40T
    Surgery 25/1/2010
    Australia

    Knowthyself

    Scoliosis Corrected 25/1/2010 by Dr Angus Gray, Prince of Wales Private Hospital, Sydney. Fused T3-L4.

  5. #5
    Join Date
    Dec 2009
    Posts
    36

    Get a 2nd & 3rd & 4th opinion

    Hi

    As Jimbo already said, see another surgeon. It's not about shopping for a dr who says surgery or one who says no surgery. Right now, it sounds like you are questioning this dr. You don't trust him. And if there was ever a need to trust your surgeon or dr, this is it. Because even if he were to operate on you, you will be wondering about other things he says.

    Also, make sure you see an orthopedic dr whose business is adult scoliosis not just a general orthoped who fixes broken bones, etc. I believe the NSF home page can take you to a page where you can find scoliosis drs in your area.

    Did he suggest therapy? It may not reduce the curves but it will strengthen your core body muscles and that may give you some pain relief.
    Thoroughly disgusted with people in this group

  6. #6
    Join Date
    Dec 2009
    Posts
    36

    Oops one more thing

    About those cysts...

    Did he say where they are? On the pelvis? Part of internal organs? What did the MRI report specifically call them?

    Sorry to get picky but obviously if these cysts are part of internal organs, you need to see someone related to that body system not the orthopedic dr. Did he recommend that?
    Thoroughly disgusted with people in this group

  7. #7
    Join Date
    Jul 2009
    Location
    Meridian Idaho
    Posts
    103
    I was fused T2:S2 in Apr 08. The only thing I can not do is stretch, arching my back. I do what I call elongating myself, where I just reach up as far as I can, no arching. And I'm 56 now. I sometimes have to laugh at myself when I'm out shopping, trying on shoes. I feel very self-conscious if I have to ask for help. Outside of that, I just use my knees a lot to squat to pick something off the ground. It becomes an automatic movement without even thinking about it. Hope this helps!
    Les, Biker Babe, age 56 (at time of first surgery)
    Fused T2 to S2, posterior only, 8 Apr 08
    T3 fracture repair and revision, Mar 09
    Broke left lower rod and pelvic screws removal, Dec 09
    Scheduled to remove all hardware, replaced everything instead due to non-fusion, Nov 10
    Remove top 2" of rods and screws, Feb 14
    Pre surgery degrees: L40, T45
    Post surgery degrees: L8, T10

    Happy, joyous and pain-free!
    Surgeon: C Timothy Floyd, MD, Boise Orthopedic Clinic

  8. #8
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Quote Originally Posted by lapieper View Post
    I was fused T2:S2 in Apr 08. The only thing I can not do is stretch, arching my back. I do what I call elongating myself, where I just reach up as far as I can, no arching. And I'm 56 now. I sometimes have to laugh at myself when I'm out shopping, trying on shoes. I feel very self-conscious if I have to ask for help. Outside of that, I just use my knees a lot to squat to pick something off the ground. It becomes an automatic movement without even thinking about it. Hope this helps!
    I do that elongating thing too, reaching up in the morning, and it's the 'new way' that I stretch my back. It feels so good. Until 3-4 months ago, I thought I'd never be able to do this again.

    Mike,
    I'm fused T3-L3, and like Jen said, I don't find anything that I want to do that I can't. I might have to do said thing in a slightly different way. I agree with the others that you should see several other surgeons for different opinions.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  9. #9
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184
    What do you think the chances are to golf after a fusion like that? I love to golf, but man, I guess I would trade that too to be out of so much pain.

    And yea, I think I may be done seeing surgeons. From what Im understanding, Im going to be a fairly complex case to handle. I think Dr. Orr is one of the best in the country from what Ive gathered. He did say say he would refer me to Dr. Lenke in St. Louis if I wanted to see him. I trust and respect Dr. Orr's opinion so WHEN I decide to go ahead with it, its going to be him.
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  10. #10
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    I wonder if other fused golfers will come on and advise...I have not played golf since surgery but I just made a golf "swing" and there was no pain or stiffness, but a definite loss of strength. So I would suggest regarding golf, it might be a matter of time to regain strength and possibly learning a slightly different swing. But you can do it Mike!
    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

  11. #11
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184
    Yea. This forum is so freakin awesome. The insight and encouragement and experience is just great. I know my surgeon is just doing his job by telling me I should try to hold off on such an extensive surgery, but I know its something I really have to do.

    I go to meet with my GP this Friday to discuss things I guess. Dr. Orr said he wouldnt be able to schedule "my" surgery until June. Im starting to think I'd better get my name on the list before I have to wait even longer.
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  12. #12
    Join Date
    Sep 2009
    Posts
    238
    Hi Mike,

    I am about the same age as you (I'm 31) and have almost the same curves as you. I can totally relate to the amount of pain you are going through. That's why I finally made the decision to go through with this surgery. If we are only 30 now, I can't even imagine the pain 20 years from now! Anyway, I have almost the same curves as you (55 thoracic and 58 lumbar) and my surgeon is only fusing me from T4-L3. He doesn't want to fuse me down to the sacrum, even though I have moderate degeneration with my L4, L5 vertebrae. He is one of the top surgeons in the world too from what I hear. I know every case is different but I was just wondering what are some of the reasons that your doctor said you needed to be fused to the pelvis? Do you have really bad degeneration in your lumbar spine that showed up in the MRI?

    Best of luck to you,
    JenM
    Surgery date: June 8, 2010 with Dr. Boachie
    Thoracic curve: 55 degrees, corrected to 25 degrees
    Lumbar curve: 58 degrees, corrected to 27 degrees
    Posterior-only surgery, Levels T3-L3
    31 year old mother of 2 young kids

  13. #13
    Join Date
    May 2009
    Posts
    3,745
    Hi Mike
    i need fusion to pelvis too...am putting it off..but i shouldnt..i am 61 years old...my scoli took a long & winding road, as it were...just got really painful about 5 years ago after i herniated discs...then all heck broke loose! before that , i tolerated the pain well & went to gym 3-4 times a week! worked 2 jobs, too!

    i am going to see dr anand in CA next week...he can supposedly do less invasive on everyone, or so he thinks...i have alot of doubts, as a few of the best surgeons in nyc, including dr boachie, told me "No", minimal invasive is not possible for me...i am 40 degree thoracic & 61 lumbar, with rotation, spinal stenosis, degenerative disc disease & arthritis.....they are talking ignore upper curve, as the pain is controlled with botox shots i get every 3-4 months...also...and this is important...i had to RETIRE, the pain got so bad...but you are obviously too young for that...so you need to be able to return to work....i cannot work anymore, much to my sadness...i loved my jobs....

    i think you once told me that pain management shots arent possible for you, for some reason....so, if that is true, i could see how surgery would be the only choice...i dont blame you for hesitating, but if the pain i so bad...what else can you do? i would recommend seeing another surgeon, even though you say you want dr orr...maybe you should just consult with dr lenke? i am consulting with dr anand, but he wont do the surgery even if i like him, as he does not take my insurance! i will probably go with dr lonner in nyc...i like him alot! i fear dr anand cannot do minimal invasive on me...no matter what he thinks! have to go investigate for myself to be satisfied.....i am told i need T11-S1 & L4-sacrum, with bilateral pelvic fixation...

    where are the cysts? never heard of that before in the spine...?

    jess

  14. #14
    Join Date
    May 2009
    Location
    Adelaide, Australia
    Posts
    424
    I don't understand why they wait either. With all the pain i was experiencing pre-op especially in the last three weeks, I would have climbed the walls, if my surgeon said we need to wait. Yeah, sure, he told me i couldn't play netball anymore, but, hey, iwas willing to trade netball for no pain. Good luck!
    Vali
    44 years young! now 45
    Surgery - June 1st, 2009
    Dr David Hall - Adelaide Spine Clinic
    St. Andrews Hospital, Adelaide, South Australia
    Pre-op curve - 58 degree lumbar
    Post -op - 5 degrees
    T11 - S1 Posterior
    L4/5 - L5/S1 Anterior Fusion

  15. #15
    Join Date
    May 2009
    Posts
    3,745
    there is a big difference being fused to L3 with starting the fusion at L4...mine would be like Val's...T11-S1 & L4-sacrum....i have hesitated because there is no guarantee that i would not have pain after healing...even some new pains that werent there before!

    that is why i wait...the pain relief is the only reason that i would try the surgery...i am not afraid of heart/lung damage, as my upper curve would not be fused...it is now 40 & barely increasing at all...it is the lumbar that is causing most pain & problems....the disc degeneration is bad in the lower lumbar...THAT necessitates fusion to pelvis...i wouldnt be considering it if the doctor didnt state it was needed...all the top surgeons i consulted with in nyc said the same thing, including dr boachie, who is supposed to be one of the best

    jess
    Last edited by jrnyc; 01-20-2010 at 11:51 AM.

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