Guest guest Posted April 11, 2009 Report Share Posted April 11, 2009 Any discussion with on this subject and if so, what was his impression? Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 Kathy, Most docs measure in cm's forward. I had a significant forward lean prior to revision. Good pictures of forward lean is in the photo's section, look at either or Suzanne's photos, I think Suzannes is under Bahamadream( something like that). They show a significant forward lean and what they looked like after surgery, quite an eye opener and amazing. My best description of forward lean, is taken from a member Edie who isn't active here for awhile, she said she looked like she was folded in half like a lawn chair, good visual. It was the thing most people noticed after I had my revision, that I was straight and tall. Peo[ple didn't tell me how bad I looked prior, they didn't want to hurt my feelings. Colorado Springs [ ] curious i'm pitched forward 30-35 degrees. is anyone in group this severe?...worse?...or less? just curious......................K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 the severity of my saggital view is almost identical to melissa. i have different hardware...2 rods with 18 screws. i wonder if my hardware is easier or more difficult to remove. both of the lady's after pictures are GREAT. gives me hope =) thanks.........K > > Kathy, > > Most docs measure in cm's forward. I had a significant forward lean prior to revision. Good pictures of forward lean is in the photo's section, look at either or Suzanne's photos, I think Suzannes is under Bahamadream( something like that). They show a significant forward lean and what they looked like after surgery, quite an eye opener and amazing. > > My best description of forward lean, is taken from a member Edie who isn't active here for awhile, she said she looked like she was folded in half like a lawn chair, good visual. > > It was the thing most people noticed after I had my revision, that I was straight and tall. Peo[ple didn't tell me how bad I looked prior, they didn't want to hurt my feelings. > > > Colorado Springs > [ ] curious > > > > i'm pitched forward 30-35 degrees. is anyone in group this severe?...worse?...or less? just curious......................K > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 Kathy, You revision hardware you had put in ( 2006 right), is your new surgeons work, how easily will depend on bone growth. I had my first revivion hardware out 11 months later, and my surgeon had a tougher time with that hardware then with my Harrington Rod that had been in nearly 30 years. I wish now I had asked for my revivion hardware( they will give it to you if you request in a hazerdous waste bag), got my Harrington Rod, makes for interesting conversation, but was dumb and didn't ask for my revivion hardware. Would be neat to photograph it and put it on the site for those curious to see what it looks like. You can see in 'a photos her removed illiac screws/bolts, neat to see. Anyway, ask whoever you see, how hard hardware removal will be. Was your revision anterior/posterior? Was it staged? Have you made an appointment to see a new surgeon yet? Colorado Springs [ ] curious> > > > i'm pitched forward 30-35 degrees. is anyone in group this severe?...worse?...or less? just curious......................K> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 my rod in 81 was removed because it broke. my 2007 surgery with long rods was mainly for degenerated lumbar discs, but my surgeon convinced me to get tha long rods to prevent future deterioration. i had started developing thoracic kyphosis. so it was the surgery to end the need for any future surgeries. my surgeon thought that my scoliotic curve had self fused, but when he was in there, realized it wasn't. everything went according to plan, except for me doing a nose dive when i tried to walk. my L5/S1 fusion failed immediately. i think the difference between me & other group members is... since my fusion failed, if i lay down on my back and allow my muscles to quit spasming, when i stand up, i am perfectly erect...with beautiful posture. i can maintain my posture as long as i don't move! when i stand up straight & look in the mirror, i can't help but cry. i was sooooooo close to looking normal again after 25 yers. now i look worse than ever and my pain is worse than ever. basically the screws are keeping my tailbone attached to my spine. the CT scan report called it " vacuum disc phenomanon " wow...my surgical history sounds like it is nothing compared to yours. ok...tell me how to not be & sound like a bitter doctor hater when i go out searching for my expert revisionist =).......................K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 Kathy, I get the picture better now. My history was tough, but, but, but, it had a happier process than yours it seems. Just took a lot of surgery to get me where I am. You can live in the past or move on, help others, thats what I chose. You too will see that living in a bitter place serves no one, and these new docs are working hard to improve our lot, and I'm thankful. We see more and more very good outcomes, and I'm pleased about that. Is having this much of ones spine fused optimum, hell no, but for me, it's given me a quality of life back, for me the pain is gone, I feel and look good, all I can ask. Do I wish it hadn't taken 15 years to get diagnosised, yeah, and less surgery, yeah, but I got to the promised land even though. My advice in all this, is take it a step at a time. Look at each dr visit as a opportunity. Keep learning, asking questions, the more you learn the better patient you become. I'm still working at the learning, I've helped here for years since my revisions, but stay to see how we hold up, and because I'm a bit selfish, I want to learn for not only me but my daughter that has scoli too. I bet when you find your doc, you'll know it like I did, I knew Kumar was my doc down to my toenails. He and I have battled the beast together, and I knew he'd get me feeling better, took three surgeries but he got me there. I'm proud of you for not giving up, many might have given your history, or accepted the lot given, bravo for fighting the battle yet again! Colorado Springs Re: [ ] Re: curious my rod in 81 was removed because it broke. my 2007 surgery with long rods was mainly for degenerated lumbar discs, but my surgeon convinced me to get tha long rods to prevent future deterioration. i had started developing thoracic kyphosis. so it was the surgery to end the need for any future surgeries. my surgeon thought that my scoliotic curve had self fused, but when he was in there, realized it wasn't. everything went according to plan, except for me doing a nose dive when i tried to walk. my L5/S1 fusion failed immediately. i think the difference between me & other group members is... since my fusion failed, if i lay down on my back and allow my muscles to quit spasming, when i stand up, i am perfectly erect...with beautiful posture. i can maintain my posture as long as i don't move! when i stand up straight & look in the mirror, i can't help but cry. i was sooooooo close to looking normal again after 25 yers. now i look worse than everand my pain is worse than ever. basically the screws are keeping my tailbone attached to my spine. the CT scan report called it "vacuum disc phenomanon" wow...my surgical history sounds like it is nothing compared to yours. ok...tell me how to not be & sound like a bitter doctor hater when i go out searching for my expert revisionist =).......................K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2009 Report Share Posted December 29, 2009 Hi... I've confirmed that all the UCSF ortho spine surgeons accept Medicare. Drs. Berven and Hu do the most revision work, but you would also be in good hands with Drs. Deviren or Burch. Regards, > > my last surgery in 2007 was posterior only (12 hrs). when my surgeon finally admitted i had flatback, he said removal of the hardware wouldn't be too hard. removing the rods and leaving the embedded screws in is also an option. i think leaving the screws in would be less traumatic. i also have my broken rod from 1981. the only surgeon i have seen for a revision is pashman @ cedars. he suggested taking out the existing hardware, one/possibly two osteotomies, and only replacing the hardware at my lumbar/sacrum level, with iliac anchoring bolts. i too will have to have a posterior/anterior/posterior revision. he didn't say how spaced out the phases would be. i currently have 14 " rods from T1 down. i hope getting short rods is possible. i'm currently only fused at T4/T5/S1. swapping out long rods for short ones means i would again have flexiblity of my upper spine. i haven't gotten a second opinion yet. i think my next step is to forward my > films & records to dr lagrone. he does phone consults. from the information i've received in this group, my next face-to-face will probably be at UCSF. i thank god for the info i've gotten from the group. i hate to think how close i might come to have ANOTHER botched surgery from an over-confident & under-skilled surgeon............K > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2010 Report Share Posted July 10, 2010 Ditto!Teri From: "schandler21@..." <schandler21@...> Sent: Sat, July 10, 2010 8:41:42 PMSubject: [ ] Curious ,One of the most frustrating things about treatment is it's so different person to person, and with one person, so different day to day and sometimes hour by hour.It seems pretty common to have flu-like symptoms starting a few hours after injection and lasting about 8-12 hours.My staff recommended taking the shot that same night each week, about an hour before bedtime. That way you hopefully sleep through most of the immediate side effects. Also, my staff wasn't above pre-medicating to get drugs in your system before the shot hit. Overall, most shot nights I slept hard through the majority of effects.Congratulations on starting treatment! You've found a great group here that will help wherever we can.Stevewww.hepcman. comLife is much more fun when thought of as a scavenger hunt as opposed to a surprise party. Jimmy Buffett [ ] courious On the first Initial shot, What should I expect do I get ready what should I do? If anyone can help on this it would be greatly appreciate. Thanks love you all . Quote Link to comment Share on other sites More sharing options...
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