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Thread: It's About Time

  1. #1
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    Smile It's About Time

    Hi Folks.
    I haven't posted for quite a while, but I visit very regularly to see what is going on.
    Though obviously Covid-dependant, I have finally been given a tentative time frame for surgery of around early June 2021.
    The plan as I understand it is to fuse T2-L1.
    My primary purpose for posting is to see if someone would kindly direct me to the very well done list of items to acquire pre-surgery for a better experience post-surgery. I have seen it here before and cannot seem to locate it again. Help greatly appreciated.
    While certainly nervous about a major operation, I am very hopeful that I will be relieved of the present pain in the long term.
    The curves have increased over the last few years and pain in various parts of the torso are a fact of daily life. Recently, the primary area of discomfort is where the ribs meet the hips. They're not supposed to meet, right?
    Lung capacity is running around 60%, which doesn't make wearing masks any easier.
    My surgeon will be Dr. Stephen Lewis at Toronto Western Hospital. As I look towards the surgery, it helps that I feel very confident in his abilities.
    It has been three years on the waiting list since I decided to move ahead with surgical intervention. Socialized medicine does have its downsides.
    My pre-surgery CT Scan (March) and MRI (May) are both scheduled now.
    Thanks to all of you well- informed people in helping me understand what I can expect in recovery, both immediately after and over time.

  2. #2
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    Quote Originally Posted by Twisted Lifter View Post
    My primary purpose for posting is to see if someone would kindly direct me to the very well done list of items to acquire pre-surgery for a better experience post-surgery. I have seen it here before and cannot seem to locate it again. Help greatly appreciated.
    Here you go:
    PreparingForMajorBackSurgery.pdf
    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

  3. #3
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    Thank you very much!

  4. #4
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    reno,nevada
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    Twisted, You made it a long time.....longer than me.....

    I didn't buy anything before my surgeries....but having someone to get the things you need in immediate recovery is important because you won't be able to drive. I don't know how things work in Canada, but my insurance company supplied me with a walker and a grabber. There are 500 walkers in every nursing home basement you could probably get for free, and you could use BBQ tongs to pick things up with. You don't have to spend a lot of money is what I am saying. I would not buy any furniture now, make that decision after you are home.

    I had the CNA at my house pick me up a latex foam topper about 10 days after I got home. It doubled my sleep time. I used that 2" thick topper for 1 year on a Tempurpedic medium bed. Some toppers go up to 4 inches thick, if I had to do it over again, I would go 4 inches. I do not use Tempurpedic pillows.

    The most important thing on the list of items you will need is a positive attitude. I do not doubt your ability to recuperate based on your lifting history....Apply these attributes to your recovery and you will do just fine.

    Your lumbar must be in good shape fusing to L1. Very good....

    How large is your T curve right now? How much Chiro did you do? I also did heavy Chiro for the binding....

    You will do just fine...

    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

  5. #5
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    May 2010
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    Thanks for the tips, Ed.
    I will definitely move on that mattress topper. Sounds very wise.
    My wife is a bit of a project manager, so she was chasing me down for a list with which to be prepared.
    Lower back is okay, relatively speaking. Some wearing discs.
    I will be 58 by the time the surgery is done, assuming present schedule. I held out as long as I could. That's what all the doctors said to do. Don't do surgery until you need it.
    For me, no one told me until I made the decision to move ahead with surgical intervention that the wait list would be 3 years. I would have opted in sooner had I known that.
    As for the thoracic curves, upper part is running over 90 degrees (measured as high as 97) with the lower part of the "S" around 47 degrees.
    I have had chiro. I have had physio. I have had registered massage therapy. All pain relief from each is quite temporary, lasting maybe a couple of days if I am lucky. I think the physiotherapist was most frustrated by this, because I would seem to her to be right back at the start every visit. She wasn't getting the progression that was positive feedback for her.
    I understand that once fused, the critical areas on the spine become the the vertebrae on either end of the fusion, to where much more stress is transferred. Have you had issues with that?
    I was at my lung doctor yesterday afternoon. Lungs and breathing are the major issue for me other than chronic pain. Lung capacity presently sits at 58%. My oxygenation is good, but I have no reserve capacity left. Doesn't make wearing masks easier.
    In practical terms, I just hope to come out the other side breathing better and with less chronic pain.
    Thanks again for the advice,
    Peter

  6. #6
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    Sep 2019
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    308
    Quote Originally Posted by titaniumed View Post
    I had the CNA at my house pick me up a latex foam topper about 10 days after I got home. It doubled my sleep time. I used that 2" thick topper for 1 year on a Tempurpedic medium bed. Some toppers go up to 4 inches thick, if I had to do it over again, I would go 4 inches. I do not use Tempurpedic pillows.


    Ed
    Why is a mattress topper important? What will it do for you?

  7. #7
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    Quote Originally Posted by Tina_R View Post
    Why is a mattress topper important? What will it do for you?
    It's just extra padding to help with any sore areas.
    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

  8. #8
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    Quote Originally Posted by Twisted Lifter View Post
    I understand that once fused, the critical areas on the spine become the the vertebrae on either end of the fusion, to where much more stress is transferred. Have you had issues with that?
    Hi Peter...

    It's actually not the end vertebrae, it's the discs and vertebrae above and below the fusion that are very vulnerable to degeneration. Here's a good animation video explaining the process: https://www.youtube.com/watch?v=yQwYISvBkzo

    There are many of us on here, including myself, who have suffered from adjacent segment disease, and have had to have more surgery because of it. Hope you dodge that bullet!

    Regards,
    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

  9. #9
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    Quote Originally Posted by Twisted Lifter View Post
    I held out as long as I could. That's what all the doctors said to do. Don't do surgery until you need it.
    Wait until your 97 degrees?......When does one need surgery? Thats the question.

    Sounds like the Canadian medical system delay tactics to me. It's not the surgeons, it's the system.... A few Canadian scoliosis patients have been delayed in the past around here....This is wrong. There is a right time and a less desirable time to have scoliosis surgery.

    (Posting in general) (Comments on the topic of adult decision making)
    I have a lot of trouble with simply waiting until curves get too large or degeneration gets too bad. Yes, there are complications, but one also needs to consider that complication risk's will keep increasing....Just because you do not have pain doesn't mean you wait until you fold over. There is never a good time to have scoliosis surgery, but patient decisions that reject scoliosis surgeries because they are afraid, or because some alternative type has pre-programmed them negatively is wrong and this causes a lot of damage. Chiro's will do this....Bracers and Masseuses also, and I did that route for many years, (until it didn't work or last for any period of time). If one has scoliosis curves over 50 degrees, its best to assume that you will have surgery someday. If not, what happens is that it keeps getting pushed to the back burner or swept under the rug and then decisions are made when degenerative pain problems happen. I fought this for many years and barely got my foot in the door. I was rejected for surgery in major pain and my surgeries became serious and it does make things harder for surgeons. It's always going to be best to talk to a scoliosis surgeon since they are the best trained. It doesn't mean your having surgery now, but in case you need surgery, you are going to be much better prepared and much better off.....I say this because we see members come and go.....afraid, and we think about them because we were there....Adult decisions usually are based on pain but it's not that simple since we do get used to pain, and the only way to really know is to have a medical doctor, (scoliosis trained surgeon) do an evaluation. There are other things that play in the surgical equation, so it's not just about curves.....breathing at 58% is one of them for example.

    Peter, On the list for a June surgery, you can wait. It's going to be easy. You do this a week before surgery.

    For now, If you have pain, ask your surgeon or MD for an NSAID prescription. For example, Celebrex or Diclofenac. These meds will reduce osteoarthritic and neuropathic (nerve) pains by about 90%. I have a long history with "prescription anti-inflammatories", and they are recommended by HSS for pain in scoliosis adults. These do not affect the mind like an opoid, and you can function on them....Of course, never abuse medications, especially these. Take per doctors orders or instructions. These meds have saved me countless times. I always have these on standby and travel with them. (When you do have surgery, do not take these as they inhibit fusion). This is all need to know adult scoliosis information.

    I have always used hot soaks for pain. There is nothing like a nice deep tub with water temps at 106 degrees. Works great for pain. Drink plenty of water while soaking as you lose it fast and do not want to get dehydrated which is bad.

    Floating in water is fantastic. If we could sleep in a weightless environment, you could scrap the foam topper!

    https://en.wikipedia.org/wiki/Nonste...lammatory_drug

    https://en.wikipedia.org/wiki/Diclofenac

    https://en.wikipedia.org/wiki/Celecoxib

    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

  10. #10
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    NC
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    We lived in Canada for three years as US expats. I knew a couple who moved to Canada from South Africa several years earlier. The husband is a doctor. After all the necessary credentialing, he was made to WAIT YEARS for a slot to open before he could practice medicine. He could have been cutting down wait times for people if he was allowed to start practicing right away.

    The secret to how Canada keeps healthcare costs down is that they ration doctors. People who say we should copy Canada would never actually stand for that so all that Canada-envy is nonsense. My daughters both needed surgery for their scoliosis. If I was told they had to wait longer than the few months they did wait here in NC, I would have moved back to the US in a New York minute to get them the surgery. I had that luxury. Canadians may not.

    Now the routine stuff is likely better in Canada than the US. I never had trouble accessing well child care and such although I have company-supplied private US based insurance and always seemed to be at the beginning of the line because of that. Money talks even in Canada.

    As we have seen on this group, Canadian pediatric orthopedic surgeons who do spine are few and far between. Given how often children develop large curves (which rarely if ever happens involuntarily in the US because we have enough surgeons), it is obvious Canada is rationing doctors. I think I read that BC had one pediatric orthopedic spine specialist. That could be wrong. Anyway that guy was probably doing trauma much of the time which explains why the two BC kids we heard about on this group had such huge curves.
    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."

  11. #11
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    May 2010
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    Burlington, Ontario
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    No one said the system here in Canada wasn't a bit Byzantine. Moves like a typical bureaucracy. Slowly.
    According to the surgeon, his issue is really about getting operation room time. Were he allotted more operating room slots, the waiting time would be less. And, of course, in times when the system is stressed, like during Covid, the system considers surgeries such as this "elective" as though I wanted a vanity-driven tummy tuck or some such thing. Dr Lewis also says there aren't enough people doing what he does. I agree.
    Government insurance would not cover a trip to the US for the procedure either. I would have to have the quarter million USD (or whatever it costs now) from my own resources. I turned down a job in the US a couple of years ago (My wife is a dual US/Canada citizen. Moving wouldn't have been difficult), and even their insurance program would have required me to pony up 20% of the cost uncapped.
    But that said, I also don't have to worry about going bankrupt from some unexpected procedure and money is never a deterrent to seeing a physician.
    Many Canadian doctors go to the US for the money and resources. The very first scoliosis specialist I saw about 20 years ago moved on to the Cleveland Clinic.
    I saw another who essentially gave me heck for wasting his time because unlike most of his patients, I could walk. I did not see him again.
    Don't get me started about the x-ray technicians who attempt to read the scoliosis films. While the Dr. Lewis' team measures over 90, I had one report to my MD that the curve was mid 30's. I guess I was magically cured. Apparently he "measured differently". No kidding...
    For pain, I do have and use a Celebrex prescription. I also have Tramocet (325 mg acetaminophen/37.5 mg Tramodol) for more acute times and at night. I have also been experimenting with CBD oil (ingested), as it is legal here. + or - 50 mg twice a day helps and keep down the Tramocet use. But, and I know I am preaching to the choir here, nothing is 100%. Some things work better than others, depending on the day.
    I appreciate the encouragement and commentary very much. It helps to share with people who understand.
    Floating would be great, Ed. I have often wondered what a micro-gravity environment would be like for the spine, like on the International Space Station. For $55 million each, we can find out
    Stay safe, Everybody!
    Peter

  12. #12
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    Any Canadian members under age 18 can have scoliosis surgery at Shriners for free. Same for the US. For those that do need surgery, having an answer that prevents medical hardship and not utilizing the technology is a shame. It's not like we don't have an answer? This is the look that Dr Boachie has on his face these days trying to hold down a continent of deformity cases. The look of desperation because most of the hard parts in scoliosis surgery have been solved but not used to help all that need it...
    https://www.cbc.ca/news/canada/briti...list-1.5817338

    Water therapy is great....It helps.

    I started scuba diving for weightlessness and pain about 25 years ago. It was a great excuse to leave work on a moment's notice and go out to Hawaii, and is probably my best advice on this forum. "My back is KILLING me, I have to go dive Hawaii right now". Use your scoliosis! (smiley face) Actually, there is not much to smile about, but my coworkers knew....They saw me go downhill over many years.

    On some of those trips the pain was devastating....and I came so close to going to the Kona hospital to beg to be knocked out with an injectable. But they won't do this.....There are times when pain is so bad, you need to be knocked out. Hospitals should figure out what needs to be done about this because it happened with me a few times. You can't scream loud enough! And you can't sleep.

    Of course this is neuropathic pain, disc herniations and nerve root impingement inflammation. Radiculopathy. Diving or water therapy in this case doesn't relieve pain quickly. It takes many hours of ocean therapy to try to get a result.....If I wasn't diving, I was ocean swimming for hours and hours, afraid to get out and walk up to the beach. Exercising while being de-weighted is a huge benefit.

    Tonybunny knew. We discussed our cases by e-mail and her story was a story of survival as a scoli child. She did 2 thoracotomies, one on each side, a costoplasty (thoracotomy rib hump procedure) and her backside was opened up several times. The only way she could handle that pain was by soaking and floating in a deep tub at 106 degrees F. We both did the same things over many years, and nobody on any of the scoliosis forums was talking about this...There are not many "open" thoracotomy cases these days, that's where they access the front of the thoracic spine under the armpits. I have read it's the most painful of surgeries. Tethering is a "minimally invasive" thoracotomy through portals. Huge difference in pain. Substantially less.

    Peter, I hope you don't run into trouble with the system. I don't know how loud you can bark, my surgeon saw the pain I was in at the end, it was pretty bad. He repeated several times "Why did you wait so long". I didn't think I needed to answer that question.

    I can't imagine your surgeon not saying anything about lifting....lifting produces or magnifies incredible forces especially in the lumbar....It's amazing what our bodies can handle....(to a point)

    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

  13. #13
    Join Date
    May 2010
    Location
    Burlington, Ontario
    Posts
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    Thanks, Ed. Unfortunately, it has been quite a few years since I was under 18.
    When it comes to lifting, the doctor approves least of deadlifts and squats. I don't do much of either with free weights anymore.
    I saw my lung doctor a couple of weeks ago.
    He tells me my blood oxygenation is fine but that my lung capacity has dropped from around 64% to about 53% currently.
    He notes that I have essentially used up any "reserve capacity" lungs would normally have.
    Also had a CT Scan this week and an appointment with Dr. Lewis.
    Due to Covid, surgery schedules are still sketchy, but it looks like June is most likely. I am told they will fuse T2 to L3. He said he wanted to leave me a little bit of flexibility.
    I am showing some arthritis in the lumbar area, likely due to stresses from the curves. However, he noted that most of my discs were in good shape-"nice and squishy", he said.
    Personally, I am really hoping for some decent relief for my breathing. I shouldn't get winded walking from room to room (there is nowhere else to go anyway).
    I always look at the images with the doctor but they always leave me feeling distressed. It is one thing to feel the affects, another to see the problem graphically.
    At this point, I would just like to get it done. I am tired of wondering what will hurt next.
    I appreciate the forum as a knowledgeable audience to whom I may express my concerns. Thank you.

  14. #14
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    reno,nevada
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    Quote Originally Posted by Twisted Lifter View Post
    I am tired of wondering what will hurt next.
    Oh boy.....I don't think it's worth anticipating or being "overly anxious" about future medical problems. These things will drive you crazy.....Even though you need scoliosis surgery or needed it a long time ago, this is expected, and the improvements that you do get will be gifts, and the things that can or do go wrong are things that we deal with when we commit to scoliosis surgery. This full 100% commitment, and its lifetime.

    I looked the other day and found an old 1975 Harrington study done with old school equipment, and they did get roughly a 10% improvement in lung volumes across the board in time after those surgeries. I personally can't say my breathing has improved, but then there are many other reasons why we lose our breathing.....Cardio and arteriosclerosis are just 2 examples that many of us have when we age. Cholesterol starts upon birth. The American Grand Slam breakfast uses the word "Slam" for a reason. It's not the baseball, its cholesterol that gets knocked out of the park....4 eggs, bacon, sausage, and tons of butter on pancakes! My arteries closed up just typing this paragraph!

    You know that full fusions down to L3 are hard on the levels below....and there is a possibility that you might need and extension down the road. Sometimes, surgeons try to preserve levels for reasons, and it's worth a try. I didn't have that choice since my L5 was hammered, my lower levels wouldn't have made it, this was understood.

    Even though many of us do well, chances are that something will happen and nobody knows what that can be. Orthopedic complication lists are large....and all we can do is try. That's all we can do is to make the best of what happens.

    I would practice breathing exercises now. You will be given an incentive spirometer or you can buy one of these really cheap online, or simply just practice without one. I still do breathing exercises to this day....not for the lungs, for when securities drop due to rising 10 year T-bill rates. (smiley face) On my death certificate under cause of death it will state "Rising T-bill rates" Ha ha
    https://my.clevelandclinic.org/healt...ive-spirometer

    Breathing really helps the lungs, and it really helps with ANXIETY. Breath in hard, hold, exhale slowly.

    When you get closer to your date, talk with your doctor about what meds and vitamins you are on, and if you should drop off before going in to make things easier on anthestheologist. I always went in clean on all of my surgeries, by my own choice.

    Eat well....Your immune system does all the work and it changes in surgery....Talk to your doctor about this subject. You want to go in in good shape walking in.

    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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