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Thread: Increasing curve but no pain do they do revision for this?

  1. #46
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    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."

  2. #47
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    https://www.sciencedaily.com/release...0630145620.htm

    The risk of blindness caused by spinal fusion, one of the most common surgeries performed in the U.S., has dropped almost three-fold since the late 1990s, according to the largest study of the topic to date. Results of the research were published online June 30th in Anesthesiology, the official medical journal of the American Society of Anesthesiologists.

    They estimated that 2,511,073 spinal fusions were performed, resulting in 257 instances of ischemic optic neuropathy, or 1.02 per 10,000 surgeries. But over that time-span, the risk decreased 2.7 fold, or 60 percent. The researchers noted that significantly increased risk for ischemic optic neuropathy during spinal fusion surgery came with age over 50; male sex; receiving a blood transfusion during the procedure; and obesity. Roth attributes the decline in risk to the increasing use of minimally invasive surgical techniques.

    "The characteristics of the patients undergoing spine fusion haven't changed all that much over the years, although the population has aged," Roth said. "So the variables that must be contributing to the decline in blindness caused by spine fusion surgery are most likely the result of changes made in how the surgery is performed."

    Roth believes that changes in anesthesia practice may also be driving the decrease in risk of blindness. Many anesthesiologists now set a stricter limit for how low they will allow blood pressure to drop during surgery, he said, which may help reduce the risk for ischemic optic neuropathy.
    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. #48
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    I think even if you sleep on your stomach you move during the night. They kept watch on my eye sight, the left pupil was larger and did not recover like the right. It worked out ok. Now I am fused at the C4 level, and when I ask the neurosurgeon about the eye he said it could be the anesthesia or the fact he worked very close to those nerves. Other than my experience, I don't know why there is a chance for blindness.
    We don't mean to scare you but inform you. You do get great information from people that have been through it.
    It is interesting about Dr. Dewalt. I had my last 4 surgeries at Rush were Dr. DeWalt practices. I was treated by a neurosurgeon.
    I had both a smaller hospital and the major university hospital. At the University hospital , I was cared for more completely than the local hospital. The treatment from Rush in Chicago is top notch.
    T10-pelvis fusion 12/08
    C5,6,7 fusion 9/10
    T2--T10 fusion 2/11
    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
    Broken neck 9/28/2018
    Emergency surgery posterior fusion C4- T3
    Repeated 11/2018 because rods pulled apart added T2 fusion
    Removal of partial right thoracic hardware 1/2020
    Removal and replacement of C4-T10 hardware with C7 and T 1
    Osteotomy

  4. #49
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    Quote Originally Posted by Pooka1 View Post
    [url]
    Roth believes that changes in anesthesia practice may also be driving the decrease in risk of blindness. Many anesthesiologists now set a stricter limit for how low they will allow blood pressure to drop during surgery, he said, which may help reduce the risk for ischemic optic neuropathy.
    Here we go...When we are put under, our blood pressure drops roughly 25%. It's the meds, the morphine. You can stroke or infarct nerves, or the spinal cord, and have problems. Thanks for posting Sharon.

    We had a poster years ago that had problems with her eyes, lifting her eyelids. It turned out to be a 3rd cranial nerve infarction.....loss of blood on that nerve. She had experts in San Diego looking and thinking, saying it was extremely rare.

    She posted here and the title of that post includes the words "110 days". At 110 days, she was putting on her makeup and suddenly she felt a pop, and her eyelids started working again. I remember her freaking out and I kept saying it will be ok. Peripheral nerves do heal, or can heal. You have to believe it....Think healing!!! Your powers, your determination in healing have to be strong. We have a lot of strong people here.

    Walking in post surgery distributes blood and its nutrients into healing zones. It's not solely about building soft tissues or leg muscles....there is a lot going on in our recoveries.

    I write a lot of posts that never make it here because of scaring people. I am sorry if this happens but then new things can seem to be scary when they are not. Like diving with Great White Sharks....

    It was about 15 or 20 years ago that they realized that you "can" dive with Great Whites.... This happened at Guadulupe Island off the Mexican coast....She waves as they swim away......

    https://www.youtube.com/watch?v=d-1xU0VfJ-g&ab_channel=GoPro

    Ed
    Last edited by titaniumed; 05-12-2021 at 01:13 AM.
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  5. #50
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    Quote Originally Posted by curlygirl View Post
    Based on comments, here are some of my questions: What is the incidence of horrible life-altering complications like paralysis? I don't understand how you could get blindness - can anyone explain that? And what's the incidence of really bad things versus lesser complications, not to be sugar coated, that can be managed or treated so that patient returns to a good or better quality of life? I definitely do have some fears about doing surgery (and you guys are doing a good job of scaring me) but I have equal concern about not doing it - having more pain, having epidurals that wear off and eventually don't work, so later being stuck with the pain and potentially more deformity and then being too old and osteoporitic to do anything about it. I'm trying to weigh these things.

    If you have no co-morbidities and are in good general health, are you less likely to have a serious complication? If you go to a fancy medical center are you better off than going to a community hospital setting, even if they do a lot of these surgeries? If you are generally fit and can walk a couple of miles a day does that make any difference in outcomes? I don't do any sports like Ed (skiing) but I do like to take vacations that involve a lot of walking or hiking and I do walk 1-2 miles a day, pain or not.
    No one really knows the rate of life-altering complications, but I think most would quote it to be somewhere between .5%-2%. Most people with the most common complications are treated successfully, and go on to be satisfied with their outcome. I think it's important to have an honest conversation with yourself before undergoing such a complex surgery. The chances are that you'll end up happy with your outcome. But, you always need to remember that you could be one of the unlucky ones, who end up with a significant complication that changes their life. I frequently hear from people who think they might end up in a wheelchair if they don't have surgery. (In my dealings with hundreds if not thousands of scoliosis patients, I've only known one person who ended up in a wheelchair.) In truth, that's probably a better outcome than something like blindness or major neurologic complications. Most adults have surgery because of pain. That's what drove me to surgery both times. Since pain is so subjective, each person has to decide for themself, if the potential rewards outweigh the risks. And, it's important for adults undergoing surgery, to realize that they shouldn't expect perfection. The truth is that you'll likely have some issue with pain or loss of function for the rest of your life. All we can hope is that the new issues are better than the old ones.

    As far as whether or have surgery at a major medical center or community hospital, the major medical center is almost always going to be safer. Not everyone has a choice, unfortunately.
    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

  6. #51
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    Irene, You know that it's perfectly ok not to make a decision right now. If so, just say your not ready and need a little more time to think things over....

    I also agree with Linda in that you will probably do ok.....Its hard when you been around here so long. I am also a safety minded individual even though I used to jump off cliffs on skis and dive with sharks. (smiley face) I have stopped skiing after all my years.... There are things that we have to sacrifice and or change when we do our surgeries, don't get me wrong, I can ski, it just doesn't make any sense taking the risk of a crash anymore.

    Just because one can walk a mile only means you can walk a mile. Athlete's get sick also....It helps to be in good shape but only your doctor can make that decision through tests....I can elaborate if you wish. It is impossible to predict some complications, the parameters of our immune systems are intrinsic and react differently. Age, sex, blood composition, genetic factors etc make it a difficult puzzle. There are factors that are not known. When I asked my vascular surgeon why my gall stones formed, I got the short answer, "Chemistry". Karen Ocker explained it happened to me. If you read here, you will see her posts from years ago.

    A really long time ago I was planning on moving to San Francisco for my surgeries, UCSF, Dr Bradford, but when my surgeon came to town, I decided that I would have him do my surgeries here in Reno. I do agree that a scoliosis center is better, but I had a lot of faith in my surgeon. I actually had 3 surgeons. 2 scoliosis, one vascular. My vascular surgeon has operated on me a few times, he knows me better than anyone else. He opened up the whole front of me. He did a good job....I do have a little bloating....but I think that's my fault as I am running a little heavy these days.

    I would ask Dr Stevens about his team. If he is doing deformity in Phoenix, he will have a Jackson table and all the necessary equipment for doing these surgeries.

    Right before he knocked me out he asked me if I was scared. I replied with "Am I supposed to be?" I have a lot of faith in my surgeons. And still do. They saved my life....

    Complications are these things we need to know about, but not worry out. Like a small icon on the lower right side of your desktop that's in your periphery.....You only open them up once in a blue moon. Prepared for anything, hoping for the best outcome.

    Its a long slow recovery.....what are these surgeons telling you on recovery time?

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  7. #52
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    Yes, I have a lot of thinking to do, pro and con. When I saw Dr. Stevens he was emphatic that I had to do this. I was actually quite surprised, knowing he's pretty conservative and thinking we were just monitoring - although pain and appearance have both gotten considerably worse in the past year. I really should see him and ask about the resources he has should I do this. He uses a specialty ortho hospital called Oasis, which seems quite small. I was surprised that they do this type of surgery there. I was thinking more standard things like hip replacements would go there, but surprised that complex spine would be done there. In case of the unexpected, where are the other medical specialists who could come in on a moment's notice? This is the kind of thing I need to understand and what makes me skittish. He does work with a vascular surgeon for anterior surgery. But the thought of anterior surgery really makes me nervous. As far as recovery, Dr. Stevens didn't say much except to say I'd be walking a mile a day in a month. That sounds ambitious to me but he seemed confident of that. I wonder if that's a mile a day feeling great or a mile a day dragging one's proverbial behind.

    I'm willing to go anywhere in the US to get world class treatment if needed - and really don't mind travel - thus my video visit with Dr. Lehman. I'm very risk averse and Columbia/NYP looks like it may be the best place on the planet for this. But he can't speak to recovery time until he sees me, figures out what he would do, etc. i may be planning a combination vacation and "field trip" soon as it might be very worthwhile.

  8. #53
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    Even though many members will travel for their surgeries, staying local does have its advantages. Complications can happen anywhere, with any surgeon, and traveling with a complication does not sound like fun.

    I changed my PCP to my scoliosis surgeon that way I could skip the GP visits. This way he was calling all the shots, and he knew all the best surgeons in town. You want good insurance so you can select your surgeons, or have your scoliosis surgeon do this.

    I don't think that you have to worry about Dr Stevens expertise....(Brown, UCSF) The UCSF fellowship slots are tight. It's going to be easier to go to the moon....(smiley face) He is going to know how to handle everything.

    L5-S1 ALIF has been studied extensively....and is also the reason why Tiger Woods is back playing golf again after 4 failed surgeries...Anterior incisions also do heal nicely....I had no problems with that. I also have zero pain in my lumbar. I never expected such incredible results, neither did my surgeon. He just shakes his head. My Pelvic anchors did ache a lot in recovery. 3 months of deep aching, then it suddenly quit. Exactly 3 months.

    30 days is pretty confident.....It's good to have confidence, but it's going to take longer. A mile is a long distance when recovering...testing the pain limits. You going to be highly delicate in immediate recovery....When they say no bending, lifting, twisting, falling, especially with any osteoporotic conditions, they really mean it. You don't want to be applying any forces while you heal....A lot of healing happens in the first few weeks, the first 6 weeks are critical.

    Bending forward is bad. It's bad without spine problems and produces HUGE forces on lumbar discs. I learned to squat vertically, this happened because you have to get down to retrieve dishes from the dishwasher. You can simply load a dishwasher by dropping them in. I did that, Oscar Madison style. I now hand wash my dishes.

    In the kitchen, you can't bend down to get items out of lower cabinets. I placed everything I needed on the counter. Multiple posters have reported breaking rods doing this. If you need something down low or high, you have to get someone else. Don't do this. For picking up clothes off the floor, use a grabber or the big toe method. You might start exercising your big toe right away! Ha ha I lost my grabber right away. I live alone, but somebody stole it.

    Everyone in your inner circle has to be scoliosis trained. Its serious surgery and we need time to heal. Down at work as time passed, if I even grabbed anything like a box to lift after 2 years, people would freak out. It was quite entertaining....

    I dead lifted a 75# box off the floor after 2 years...I don't do these things anymore, but I did it.

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  9. #54
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    Great info, Ed - thank you. The people who travel - what do they do for follow-up appointments? Do they travel again or do they find a local scoli doc to follow them and collaborate? Neither seems optimal. When I traveled to Chicago for surgery I expected to go for occasional follow-ups but ended up moving there for other/unrelated reasons.

    Funny about the toe thing - yes, I perfected the art of picking up things with curled toes when I had my 1976 surgery, and it still serves me well on occasion.

  10. #55
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    Quote Originally Posted by curlygirl View Post
    The people who travel - what do they do for follow-up appointments? Do they travel again or do they find a local scoli doc to follow them and collaborate?.
    Patients will travel back to see their surgeon....I don't know if anyone has seen another surgeon on a follow up. (Unless its international) I don't think it's a good idea....(unless your surgeon knows the other surgeon "with a different specialty", and refers him). This is a good question for Linda.

    For complications when the first surgeon has no answers, then you can move on to the next specialist or hospital. Also moving on to the next surgeon in the same complex with the same specialty is frowned upon and is not done. I am not going down to UCSF and seeing all the scoli specialists for a consult.... I would have to pick one of them.

    If I were to have some sort of spine problem today....I would contact my surgeon "first" even with him on the other side of the country. Diagnostics can be done locally and forwarded, but doctors evaluate patients "in person"....They train hard to do this and there is a lot to be said about this. I have been surprised a few times in the past, they knew what was wrong before I did any MRI or CT scans. Sometimes its not that easy, but doctors need to see their patients in person.

    This site answers questions on ALIF. Need to know information. Yes, there are more complications to be aware of.
    https://www.precisionhealth.com.au/h...y-fusion-alif/

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  11. #56
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    Great info - you are a font of knowledge! If I were to go through this I'd have to see if there is anything to be gained by traveling, by asking very good questions. I have to say that I looked at Dr. Lehman's website and the Columbia NYP site (where Dr. Lenke also is) and was blown away by the technology in use there and by Dr. Lehman's results with patients in their 50s and beyond. He seems to treat a lot of older patients. That's why I decided to do a teleweb visit there, and I first had to have televisit with his excellent NP. I was super impressed. . .but would have to determine if worth multiple trips if that's what it would require.

  12. #57
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    Here's an interesting article that addresses weighing risk vs. reward:
    https://backincontrol.com/comprehend...6631-158360165
    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

  13. #58
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    He's written a really good book, and I just got it on my Kindle. Thanks!
    For anyone else reading this, the book is called "Do you really need spine surgery?" and the author is David Hanscom.
    My take so far is that it's kind of general so not at all scoli-specific, but still really good info.

  14. #59
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    Quote Originally Posted by curlygirl View Post
    He's written a really good book, and I just got it on my Kindle. Thanks!
    For anyone else reading this, the book is called "Do you really need spine surgery?" and the author is David Hanscom.
    My take so far is that it's kind of general so not at all scoli-specific, but still really good info.
    I think that guy is an original thinker. I also agree that he is not a scoli surgeon per se. I think he just realized that these one and two level lumbar fusions he was doing for back pain weren't helping and just decided they are not the answer. I think these tiny fusions for pain constitute the vast majority of spine fusions.
    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."

  15. #60
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    It's interesting reading about complications resulting when fusing one or two levels and having 16 levels fused yourself....a lot of us around here have long constructs and do pretty good....The T2-Pelvis seems awfully popular these days! Just about every second scoliosis (adult over 50) x-ray I look at these days is as long as mine....It wasn't like that years ago.

    I also know of a scoliosis surgical team that did a difficult case like mine, and also did a 2 level in a non-scoli that ended up in chronic pain and he eats Percoset like dad raiding juniors candy stash at Halloween. Candy can destroy your teeth quickly....

    It was Tiger Woods 5th surgery that ended up with the dreaded fusion of his L5/S1 that got him back golfing again....Was it the hesitation of fusion? (They did a few non-fusion surgical techniques (laminectomy, microdiscectomy) from what I gather, on higher lumbar level's) How do you operate on the best golfer in the world? I'm sure every single spine surgeon followed his case.

    Talking about famous spine cases....here are the goods on JFK.
    https://thejns.org/spine/view/journa...ticle-p247.xml

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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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