I am a 5-Time Spinal Surgery Survivor for Scoliosis and a Newly Published Author! AMA!

Why did you require multiple surgeries? I had spinal fusion when I was 13 and generally haven't had any real issues. I can't imagine going through everything more than once.

I had a very gammy spine. I went from a 30 degree curve at 12 to 75 in just over a year (from what I remember. It may have been 40 to 75. Honestly, I've blocked a lot of that time out.)

My fusion was quite extensive, from T1-L4, and from what the doctors can figure despite the fact that I was fused with 2 Harrington rods, my spine just wanted to keep moving (twisting instead of curving however), and began to knock the bits and pieces associated with the rods out of places, which then had to be removed multiple times.

I'm told it was a very, very unusual case, which is both delightful and horrifying! (Delightful in "I am a special snowflake" sort of way Horrifying in the "Please not another surgery" sort of way.)

It was certainly character building if nothing else! I will have to have one more to fuse the rest of my lumbar spine. The curve is sitting right on the 50 degree mark, however we're trying to wait until after my husband and I have kids.

Wow so if I'm reading this right your spine shifted from the right X-ray to the left X-ray in only a year. How did that change your daily life during that period from what you remember (i.e. what were the differences in your before and after physical abilities, especially mobility)? Did you feel like your adolescence was psychologically more difficult because of your condition?

Absolutely. Adolescence was brutal. It is tough enough being a teenager, but dealing with the mental issues that come with chronic pain, surrounded by kids who are as, let's say, self-interested as you are made it very tricky. Let's face it. When we're teens we don't really have time for our friends problems. As I got older I learned to be more open about my pain and the struggles with it, and in turn I learned to be more understanding to others struggles.

So while it was psychologically hard (I honestly don't remember much about my middle school years), I came out better for it.

The biggest impact on my life at the time was on my lungs. Because of the way the curve moved, my ribs were pressing into my right lung. Prior to that I was taking vocal lessons and, to put not too fine a point on it, I had one hell of a set of pipes for a tiny person. Losing the ability to wow people with that was tough. I felt like I lost a bit of my identity. But I did keep singing after, and it came back to me!

Are you worried about passing scoliosis onto your children? My SO has it, had the fusion surgery as a teen. It just seems like a lot to go through as a kid.. Ever consider adoption? (I'm not at all saying you shouldn't have kids, btw, just curious what your views are since you have scoliosis)

We're very aware that it could happen. The likelihood of kids getting scoliosis even without family history are fairly high. However, I'm not sure what chances they have of getting severe scoliosis that requires surgical intervention. My brothers both have it, as do both my parents, but I was the only one who needed surgery. At this stage my husband and I have just accepted that any kids probably will have it. I guess the major blessing is that even if it does require surgical intervention, the procedures are much less invasive these days, so it's unlikely that my kids would have to go through the same level of hospitalization that I did.

Plus, we'd know to look out for it, as opposed to just finding it randomly on a chest xray!

We have considered adoption, partially because we're unsure how pregnancy will impact my body. I know plenty of women have kids with no problem, but I have some nasty arthritis in my lower back and neither my husband nor myself are interested in making that worse. There's a local clinic here that deals with "high risk" prenatal situations like mine, and I'm on the list to see the doctor there!

As of now, what levels are you fused? I had a fusion with Harrington rods in 1999 from T3 to L5, and in 2009 after having a rod's pedicle screw become disconnected I was fused from L5 to S1. Now 7 yrs later both rods broke again at L2-3 and the fusion fractured at the same level.

Currently I'm fused from T1 to L4, although I will have to eventually have the rest of my lumbar area fused due to the arthritis. If you don't mind me asking, how do you manage being fused from L to S? What is it like to sit, sleep, etc?

Why would you have children, and risk passing this condition onto them?

The advancements in treatment of scoliosis are amazing. There is always a risk of them getting it, whether or not it as severe as my own remains to be seen. However scoliosis is incredibly common. I don't know. I figure it isn't a deadly disease. It isn't something that ruins lives (there are always exceptions of course). I may not even be able to have kids given the state of things. All I know is that it is common enough that if there was some worry about passing it on, most of us would never procreate.

When did you have your surgery done? Harrington rods fell out of use decades ago

I had my surgery done.... 13 years ago. So I guess they were still in use then! Unless they put something else into me! :O

Was that level of spinal angulation impacting your ability to breath? Are you pain free now?

It was, actually. My right lung was at about 50% capacity, give or take, prior to my thoracoplasty. Unfortunately I'm not pain free. I've developed chronic pain because of all the muckery and whick-whackery that took place. It's a constant in my life now, but that's okay really. Could be worse. I have a cat on my lap right now.

pity me

Well I wasn't going to say it, but if you are offering...

My daughter has scoliosis and had her spine fused a few years back. She's disabled and non-verbal so I can tell when she's uncomfortable, but not always what will make her feel better. Weather seems to make her back hurt a lot more. Any tips on what you've found to make your back feel better and body more relaxed that I may be able to do for her?

At our local chronic pain clinic they really encourage trying to engage the other senses when flare ups happened. Things like putting on a heating pad or ice (depending on what feels better), watching a favorite show or movie, something that counters that sense of hopelessness that comes from the pain. Personally, my escape has always been music. I made myself a playlist of songs that I love listening to, and turn it on the minute I feel like the pain is becoming too much to handle.

Weather impacting it doesn't surprise me at all. My surgeon told me once that the best thing I could do was move to a warm climate (so here I am in Calgary, Alberta.) I can't imagine how challenging it must be for you, with your daughter being non-verbal. As a parent you want to be able to make the pain go away, or at least ease it in some way, but you have no way of knowing what will help. She's very lucky to have you.

I guess from a patient point of view, I would just try to pay attention to how she acts or moves during different flare ups and try different methods to see what she responds positively too. Depending on where her curve is, and how big her fusion is, things like lumbar pillows, memory foam, etc, are lovely to give support. If she is lying down and in pain, I would try placing a thing by very soft pillow under her hips, waist or knees (I've found it helps a lot when I'm feeling pain from the curve versus pain from the arthritis).

A family member of mine is disabled and has scoliosis. I'll ask her mom how she's learned to 'read' bad pain days and see if she has any advice and get back to you!

You referred to yourself as "survivor". We're the surgeries that life threatening or was it just a common phrase to use? Congratulations on the book.

Yeah, that probably wasn't the best choice of word. So you want to buy my book? HA. I'm funny.

It certainly wasn't life threatening, although if we had let it continue on the way it was I would have lost all use of my right lung.

It isn't supposed to be life threatening but my sister had the surgery at age 14 and passed away a week later from complications.

I'm so sorry for your loss. That really is the nature of the disease. People expect it to be a walk in the part, but things can go wrong so easily. How are you and your family doing?

My ribs were rotating and they would have eventually punctured my lungs/heart had I not gotten the surgery.

A long life of pain or a short one.

The worst thing is, pain can't kill you.

Yeah and the whole 'makes you stronger' thing is generally considered incorrect.

Funny this AMA is going on today. My brother and parents are actually on their way to meet the doctor(s) who will be performing the surgery on him in a few months. He's two years younger than I am and I'm worried for him.

Is there anything that I, as his brother, could do to help him through this?

The most important thing you can do, especially when he is post surgery, is be patient. We talk a lot about how his body will be after the surgery, but people rarely mention that being under anasthesia can really mess a person up for months afterwards. For instance, after my fourth surgery I couldn't stand the smell of cooked eggs for almost a year. It was very odd. I would cry for no reason, fall into very black moods without being able to explain why. For a while I thought I was just going mad but my mom, who is a nurse, asked her coworkers and they reassured her it was very common and it wears off.

So I would say try to be as patient as you can with your brother if this happens. Let him know he's loved. If he tries to start fights (which I did with my brothers post-surgery many times) find a way to end it. Don't push his buttons, keep the big brother teasing to a minimum. And if you find him asleep on the couch, put a blanket on him and tuck him in. It really is the little things that he will remember in the long run.

The surgery is difficult on a person mentally and physically, but as he gets older he probably won't remember his time in the hospital as much. I can't remember the level of pain I was in, although I'm told it was quite high. I do remember my big brothers looking after me like I was a newborn kitten once I was home, however, and I'll always be grateful to them for that!

If you or your brother needs anyone to talk to, just send me a message (likewise if your parents would like to talk to my mom about the experience... She is always willing!)

Hi there! My mother has 'double s curve' scoliosis (as she's always described it). Do you have any stories about living with the disease? What are the risks and benefits of your surgeries?

Also, congratulations on your novel!

Oh man, stories about living with the disease. Let me think... I was diagnosed when I was 11 and had my fusion when I was 13. I had a very advanced case of it apparently, an while I did have a hard shell brace, it didn't do much for preventing the curve from doing its thing.

Hands down I think the funniest moment was when I convinced a school friend to punch me in the stomach while wearing the brace. He was convinced I had a textbook under my shirt. Finally he wound up and went for it. I got knocked backwards but damn if his hand didn't hurt after that. There were some definite benefits to those awful hardshell braces!

At the time when I had my first surgery it was very invasive and a lengthy procedure, so along with the usual risks that come with such intense surgery there was also the fact that they were moving my spine. Like, full on shifting my spine from one position to another. It didn't occur to me until after the fact just how... amazing that really is. One wrong move and I could be paralyzed for life. When I spoke to my surgeon a year ago he told me that the procedure is a lot less invasive now. I'm not sure if they still use the Harrington rods or if there is a newer means to straightening and/or fusing the ol' vertebrae. I should look into that...

Benefits - Well for one thing I got most of my lung capacity back, which was excellent. The way my curve was set, it was pushing my ribs into my right lung, which was exceptionally annoying. If I hadn't had the surgery I would be a mess given how extreme my curve was at such a young age (75 degrees at 13), so even though I lost the ability to bend, have severe arthritis which causes a butt-load of pain all day, every day, and I have a hump on my right side (I call it 'Roger') I definitely got the better end of the deal. Plus a kick ass scar!

I have scoliosis as well, and wore my hard shell brace my freshman year of high school. (My s-curve was about 27 or 29 at the top, 23 on the bottom.) I used to tell people to try to punch me in the stomach too!

It is just so, so satisfying when they do it.

I had spinal fusion for thoracic scoliosis at 15. I have always had pain come and go, but recently (about 15-16 years post surgery) I've been having muscle spasms. Have you ever had issues with muscle spasms lasting for days/weeks at a time?

Oh my god yes. Urgh. You know, mentally I can deal with the nerve pain, even the arthritis pain, but those god damned muscle spasms that come out of nowhere are the WORST.

I'm not sure if it will help you at all, but I would look into getting a TENS machine, which gives off itty bitty electrical charges and, allegedly, helps with those spasms. Personally, because the spasm always happens in the same place, I take a tennis ball, lean against the wall with the ball directly under the spasm, and I put pressure on it while I move up and down. It is an awful, awful, uber massage that kicks the muscles ass. After that it is hot and cold compresses to make the area feel better (because I always feel bruised afterwards.) It helps, but it is a total bitch to deal with.

I'm not sure why you'd have muscle spasms starting now of all times. It might be a good idea to go to a doctor or a physio and get their opinion on it. Not that a fusion that old would be unstable, but maybe something has tweaked out a bit that needs an adjustment... I'm sorry you have to deal with those spasms. They really are the worst part of it I think.

What made you chose self publishing over traditional? Is there anything that you wish you had more help with? I suppose it's still a bit early, but how are you finding the promotion/marketing side of self publishing?

I chose self-publishing because I really wasn't interested in trying to pitch myself to people and companies. I reached a point mentally where I knew that if I didn't publish I would keep rewriting the same book over and over in hopes that it would be better and someone would want it. The problem with that was that I would never finish the series. I'd never start writing book 2 in earnest. I couldn't keep doing that to myself. My hope is that once two or three books in the series are out I will be able to an agent or publisher with some measure of success and say 'look, I did this. People like it. I made this money. Rep me.' Until then I've realized I really am content just writing for me and the few people who want to read it.

On the other hand, marketing. Oh my sweet baby jesus, marketing. It is tough as hell. Admittedly, I've found some neat things, like Amazon and good read giveaways, which in turn lead to people following me on twitter and, god willing, taking an interest in the series. It is slow going though. Part of me would love to hire someone to help out with the promotional parts. Fortunately I work in a book store and my managers are very supportive of the endeavor. They already have me booked for a signing (which will be three hours of me sitting there awkwardly, throwing books at people who walk by and probably crying a little bit.)

I have minor scoliosis, and moderate kyphosis, and am afraid to get surgery. They have to break my back and put rods in, I'm terrified to get that done. I've been trying physical therapy but it only does so much. How did you handle it?

It is very scary to think about, for sure. It isn't an easy procedure even though they have improved it so much in the last few years. It will be a tough road to recovery, but you should try to focus on the outcome if you can. You will have a straighter back. You'll be able to lay down relatively flat (yay!) and sit in hardback chairs with less discomfort (booya!) and when brats are all 'Hey what's wrong with your back?' you can tell them you are bionic and then punch them in the face.

Humor goes a long way in dealing with the stress that you are feeling from the surgery. Trying to find ridiculous bright sides to the worst scenarios can sometimes help when you are facing down the impossible. Keep at your physio and do what your doctor says, and do your best to focus on what the outcome, not the procedure itself.

Thank you ❤️ And thank you again for this ama!!!!

You send me a message if you ever want to talk about it. I get the fear, I really do. And it can be difficult to explain to people just how intense such a surgery can be.

I don't have a question really but just to share that I had two surgeries for Scoliosis when I was 14 and luckily things were okay. Wound up at 40 and it worsened from 30 to 40 degrees from when I was 12 to 14. It's nice to know that you've written your first book even in light of your chronic pain. I just want to wish you the best in your journey and writing. I guess I do have a question now! When did you know that you wanted to write a novel? Was it something you always wanted to do or a later in life goal? Anyway, good luck in the future and thanks for the AMA!

I started writing when I was 13 (mostly as a means to deal with the stress of pain etc.). I suppose by the time I was 16 I realized that this wasn't just a hobby and that it was something I wanted to pursue. Being ever pragmatic I decided that I would be a bartender to support myself, which never happened because of course it didn't. I'm not capable of standing for long periods like that. What was I thinking? I sort of chuckle now thinking that I wrote a book before I ever tended a bar.

Did you ever get spinal pain pre surgery or muscle tension? I have scoliosis and I get spinal pain and my spine is painful to touch. I also get some muscle tension.

To be honest, I can't remember. I don't recall there being any pain, or at least not enough to raise the alarm with my family doctor ahead of time. Are you putting heat on your muscles at all? I have the same issue with getting pain on the vertebrae themselves from the touch. It's nasty as hell.

I don't really treat myself in anyway, so no heat. Should I?

It might help. I would try different things to see what works for you. Heat or ice might give you some relief. Also, I have a down-filled pillow that I lean against when the physical pain (like the 'touch this spot on my spine and I will murder you' pain) starts up, and it is a blessing. Much better than memory foam or couch cushions. I would say it is worth trying different things, just to see if you get any relief from it!

I was born with a hemi vertebrae and developed scoliosis young. I had surgery at 9 and they fused my L4-S1 and placed a Herrington rod.

I've been pretty lucky that I'm not very limited in what I do (climb, dancing, yoga). But I also work in a profession where I'm sitting at a computer most of the day (engineer) and the pain/inflammation can get so bad it's debilitating...it can make me angry or short and I don't have energy to go out or do anything. Most doctors recommend PT which IMO doesn't help.

Seems like you probably deal with a lot more pain than I do. Any legitimate tips on managing it?

First off, I'm so sorry you had to deal with that at such a young age. Even at 13 I had a difficult time coming to terms with the changes that were happening. I can't imagine still being so young and having that surgery.

I would look in to your local health region and see if there are chronic pain classes offered, or if there is a chronic pain clinic you can go to.

Full disclosure, CP is forever. That is the first thing they taught us. There is no magic cure. There is nothing that can be done aside from drugs, which, lets face it, isn't a way to live the rest of your life (unless they are good drugs. My surgeon told me once "don't always say no to drugs" and who am I to argue with the man who has his hands in my back?)

That means finding a way to deal with it is on you and you alone.

I get short with my husband sometimes. I sometimes avoid going out with friends because I am in pain or I feel like pain is coming and I just... don't. want. to do it.

But here's the thing. You can't live your life like that. I know it comes off as super tough-love, but bear with me. You and me, we're the lucky ones when it comes to chronic pain. Because we had to deal with it from such a young age, we've grown up with it. We didn't have time to dream to be... I don't know, the next Steven Segal, or whatever. Our limitations were set at a very early age and we've grown up with them. And whenever I am having a bad day I think about all the people at the chronic pain clinic, well into middle age, whose lives are irrevocably changed forever because of pain. They can't do the jobs they have spent the last twenty years mastering. They can't engage in the hobbies that they love. Everything for them has changed, and suddenly they have to learn to live with it.

We don't. We are so fucking lucky. It might not seem like it, and it doesn't always have to, but we are.

Do you have lumbar support for your chair? I imagine you do, but it might not be enough. I would try getting a memory foam or a downy pillow that you can adjust while you are sitting. Personally, go with the down. Memory foam is lovely but it is also firm, and it may not feel that swell on your body. Down pillows can really be punched and pushed around in ways that you might need.

Try putting it in different places around your body. Under your butt, right in the lower spine, even under your thighs.

Learn to read your body. Try to understand where the pain is coming from on that particular day. Is it a muscle spasm day or an arthritis day? Is it on the left or the right? That's actually a really good first step in learning how to manage it. Once you're able to identify your pain you can begin the (fun?) trial and error of seeing what your body responds to when it comes to management.

Do you need pressure or soft things? (A tennis ball versus a down pillow)

Heat versus cold

Stand versus sitting

and so on and so forth.

Once you have a read on your pain, and you take the active steps to help control it physically, you can really start focusing on the mental steps you need to take. Make no mistake about it, CP is as much a mental issue as it is physical. Tough love aside, it is really important that you find ways to distract yourself. Reading, writing, painting, music, going for a walk, bird watching, tripping old people, playing Walmart bingo, whatever it takes. Your attitude will be what carries you through the worst of it.

That's not to say you aren't allowed to have bad days. You are, absolutely. I had one two days ago after I was on my feet for 8 hours working a concert. It was brutal. And of course, I was short with my husband because for me it was obvious. I should only have to say "I am in pain" once for him to get it, but he didn't, and so I was annoyed. It happens. Take a deep breath, calm your voice, and say "Listen, I'm just having a bad pain day. That's it. I'm not mad at you, I'm mad at the pain, and I'm sorry if I get short with you."

The easiest thing to do is to face it head on, say outright "Hey, this is what is happening. I know it is impacting my mood and how I am talking to you, and I'm sorry about that." People are a lot more understanding when you are open about that sort of thing. After my bad pain day, once my husband picked me up from work, he made me dinner and gave me a heating pad. What could have easily been a fight because I was cranky turned into some needed pampering because I was upfront about what I needed.

So I guess, tldr: Learn to read your body and what it needs. Try different possible remedies until you find something that fits that scenario. Be open and honest about your pain with your loved ones. Find things that you love to do and do them in spite of the pain. And try to remember, even when you have a bad day, you're still pretty lucky.

Also get this book. It has been my go to in dealing with back pain and I've found it very, verrrrry helpful!

PS: I'm sorry, I know that came off like a lecture. I didn't mean it to. Dealing with chronic pain is so damn difficult and the last thing you need is to feel like people are telling you the same BS over and over again. Hurr hurr, just be happy, hurr hurr talk about it! It's hard to understand how difficult that can be, but once you get into the habit, it can really make a difference to your pain control and your perception of life.

I second, totally, what you said. I would add, however, keep moving. Spines are made for mobility, and not moving for more than about a day will make the pain worse, in my experience.

Still, much love to all you spacky backtrians out there! Keep on keepin' on!

Absolutely true. During the bad flare ups it can be very difficult to force yourself to do it. I always regret not going for a walk when I have the day off.

What do you think is one of the most important things the average person can do to preserve or improve their spinal health?

Core strengthening exercises, hands down. I'm not talking a six-pack. But we should be able to do a push up or two, or a crunch. From what I understand, a lot of the spinal issues we experience are based int he lumbar area, so trying to keep the muscles as strong as possible is probably a huge benefit. We can easily do shoulders back, stand up tall, etc, but those core muscles take work!

Do you find that excessive bubbles in some beers actually take away from the enjoyment of slamming one down on a hot day? And some medical thing, like did it hurt of something.

It totally does because the bubbles make me burp and they interrupt the free flow of the cool, crisp nectar sliding down my gullet. There should be some measure of the perfect amount of bubbles or something.

And yeah, sorta hurt. Whatevs.

Exactly how much do you loathe hospital food at this point?

I swear to god the next time I see a bowl of strained oats I will shove it down the neck of the nearest orderly and light the whole damn institution on fire. Fuck you, strained oats.

I'm glad to hear that along with our shared Monarch, we have equally vile and reprehensible hospital-located "nourishment".

Kudos on both your resilience and your literary work!

edit: Didn't spot an ePub variant, though I might just be blind. Kindles make me want to weep, so might there be a more friendly formatted variant in future ?

I can definitely work that out! I'm still mastering the formatting for epub! Formaaaatttttttiiiiing

Hey there! I just started dating a nice lady who had rods inserted in her back due to her scoliosis (3rd degree I believe?) when she was younger. Apart from back rubs, what's a nice gesture that I can do to help with pain management or just generally making her feel better on the back?

Aww, so sweet! Bringing her a heating pad is always nice. My husband did this for me this morning without me asking. It was very lovely. I don't know about her, or even other women, but when it happens spontaneously, as opposed to me asking for it, it always makes me giddy.

I had my surgery in November 2009 and I had a 60 degree shaped S both top and bottom.

I still live in pain. Every breathe is jolt of pain, falling asleep is near impossible. What can I do to help? I've been to dozens of doctors. I'm still fully functioning, it just hurts like hell to do. I have to push myself mentally and physically every day I climb that mountain of despair. Suicidal thoughts all the time I argue invalid.

I was denied disability twice and had to work many laborious jobs and will probably until I die . I just feel so hopeless. I even recently had a myelogram performed and they couldn't find anything, but the pain is very real, I know it's not in my head because my SO says I twitch in my sleep and a lot if times it wakes me up.

• stretches and excercise you recommend

My Xray

Edit; I'm chasing babys sorry

Have you been to a pain specialist? I am not a doctor so I really can't say, but a doctor who specializes in dealing with pain might be able to point you in the right direction.

How is your pain on a daily basis? I've had 4 surgeries (discectomy lamenectomy) and I'm getting a Fusion (L4-S1) in about 3 months and I'm on enough Meds to kill a horse. I honestly feel your pain. I've lost my house, job, and wife at 35 years old because of back issues.

Pain on a daily basis usually sits at a 7 or an 8, so it is quite up there.

I can't imagine your struggles, to go through all that only to lose a house, job, and family from it. Are you seeing anyone about it? Do you have a good support network to help you through? Do you have a local chronic pain group you can attend? I made huge strides in being able to deal with the bullshit that comes with pain when I went to our chronic pain center. The most difficult part is keeping an open mind and understanding that there is no magic cure. That it is up to you to make the changes needed in order to lead a happy, relatively normal life.

Pain on a daily basis usually sits at a 7 or an 8

I've had a fusion from L4-L5-S1 which didn't help, and then another operation where they inserted some brick thing, but my pain is still there, and is around 6-8 on a daily basis. It's disheartening, and as the time has passed, I've lost my job, almost all my friends, and about to potentially losing my house since I can't work, or even sit for too long, and I'm still on a ton of meds.

How do you do it. I've lasted 4 years, but the thought of it never going away is depressing as hell. It's amazing to me to see someone who's coping.

I've never heard of a chronic pain group, but I'll look into that, so thanks for that.

I guess at some point in my life I just realized that, yeah, this is forever, but life doesn't stop just because I got stuck with a shit hand. I'll admit, if it weren't for my husband I would be in dire financial straights. But mentally and emotionally? It's like... what other choice is there? I can't wallow 24/7. I can wallow maybe 1/3, tops.

Take it one day at a time, friend. And when you have flare ups don't try to, I don't know, man up or whatever. Do what you need to in order to ease your pain. Finding others who suffer can be incredibly helpful and eye opening as well. I hope you find a local group that can give you some guidance (and new friends!)

I've thought about seeing someone but haven't quite had the balls to make that call yet. I'm your typical "tough guy" construction worker, more stubborn than you could imagine. I do have a great family, i just miss my life. I miss my wife.

I am in pain management but never sought out any type of group, it's not something I'd typically do, but maybe that's a good thing.

That it is up to you to make the changes needed in order to lead a happy, relatively normal life.

I'm in that process, it's just a painful shitty road and all the while knowing that you'll never be "fixed", you'll always be in pain. I had surgery in Mar. and I'm getting the fusion shortly. I've been dealing with this for close to 20 years and there's no end in sight. You sound pretty happy and optimistic, so I'll take solace in that.

Thank you and sorry for my ramblings! I wish you the best!

Oh goodness, I don't envy you. I've been told how hard construction work can be on the body, especially the spine.

No apologies needed for the ramblings. Sometimes people just need to talk it out. It helps knowing you aren't alone, which is why I found the chronic pain group so useful in the end. PM me if you ever want to talk or have questions about the fusion!

So what /do/ you think of PM Trudeau? Are you a fan? Not? And what's with that stunning hair?

Politics isn't my strongest point. I admit that I like him. I like that when Fort Mac was up in flames he didn't use it as a PR stunt. He got out of the way and let the professionals work until things were settled a bit. I like his hair. Squish to condish.

Harrington Rods here. I always forget the exact code like 'C4 to LX' but its pretty much the maximum and still surprises any new medical folks who see my X-rays for the first time. Some suggested 'overkill' with the rods.

Anyways, I'd like to hear you talk about 'hidden disability'. You know, for many of us we look just fine. If you happen to be young and healthy looking its even 'worse'.

My worst issue on that is whenever trying to explain to people why I cannot carry out labour. It's gotten to where I don't say anything because if I tell them I have 'back problems' its instantly met with rolling eyes and of course they heard that before and associate it with welfare abusers, false insurance claims, 'excuses' to take sick days from work. Often the same people want to cite a relative or themselves who had back problems (not realizing the tremendous difference in degree).

I can remember walking to a rehabilitation program with a guy who'd lost his foot just above the ankle. He was telling me (again, he told me this) that he felt sorry for me. He would only need to roll up his pants revealing a prosthetic foot and would be treated like gold, doors opened, sympathy and totally access to all the programs but I'd be screwed since I had my metal rods hidden inside yet (he boasted correctly) he was 10X more physically capable than I could ever be. (seriously, he was, he could even kick a football way easier than I could WITH his prosthetic foot!).

But have you ever experienced a lot of this? Call it unfair discrimination, call it visual bias, call it ignorance but have you experienced this in workplace, government programs and then in social situations? Where a 'hidden disability' is downplayed, disliked, disbelieved or along those lines?

Oh yes, that is very familiar to me. I tried to apply for government assistance to pay for my medication during a time when I didn't have insurance. Trying to illustrate just how difficult it was to work, to sit in class, any of it, was like trying to sell water to a fish. But people who worked construction and injured their backs? Apparently that was a-okay. Don't get me wrong, each case was unique, but the bureaucratic bullshit was nauseating.

Oh, I have just one more quastion. I had a 28 degree curve last year and I've been working for like 9 months to straighten it. People say I've made improvement, but I think it will never fix, and later on I might need the surgery option.. Do you think I have a chance to make it out without the titanium rods in my back? Im nearly 18...

I'm not a doctor, so I couldn't say for sure. I do know that, at least according to my surgeon, they don't like to operate or fuse unless the curve is 50 degrees +. The problem is that scoliosis never goes away, and really, everyone has a slight curve to their spine, that's just how we're built. 28 degrees is, at least from my experience, not a huge problem, especially given that you've probably finished your growth spurt, or will be finished soon. I'd guess you'd be fine, but you want to make sure you go to your doctor regularly and get x-rays to make sure that it is all right. Keep working on your strength so if you do have to have a a surgery, you will be better equipped when you come out of it. :)

How was your condition initially diagnosed?

I actually have pneumonia one winter and they did a chest x-ray to confirm it. Lo and behold there was a curve in my spine that they hadn't detected through the usual means (the 'bending over' test to see if there is unevenness in the back and such.) It was a lucky find. Even though the initial bracing didn't do much to help prevent it from growing, we were able to get in to see a specialist early on who was able to monitor it every three months. If we had to wait to see a specialist, it might have been a more rushed experience, and my mom and I wouldn't have been given the time to adjust to what was happening.

What kind of surgeries did you went through? I had scoliosis too but it's not as severe as you.

One spinal fusion (T1 to L4), three instrumentation removals (which honestly felt a lot worse than the fusion because they had to muck around in muscle to remove the rods and screws, etc.) and one thoracoplasty (wherein they cut through my ribs, removed tiny parts of them, and pushed in to make my hump less... humpish. They also took out more harrington rod bits at that point.)

I'll have one more fusion, probably in the next five years, where they deal with the rest of my lumbar spine. My surgeon wants to put it off as long as possible because after my lower back is completely fused, my hips will begin to take the weight, which in turn means I will probably have to have hip replacements. It's like dominoes! Awful, terrible dominoes!

I don't know who you are, OP, but I like you!

Spinal fusion is in my future and I am scared. Took me 18 years to admit a problem...

How did you choose a surgeon?

It was chosen for me. At the time we were living in BC, but the wait list was too long so we went to Alberta where we had family. There were two surgeons who specialized in scoliosis at the Children's Hospital and I got the best one. I'm not just saying that because he became a father figure to me. My surgeon was and still is a total badass.

I was very lucky to be living in Canada when all this went down. From what I know of the US medical system, it would be far more challenging. Trying to pick someone you trust, who holds your life in their hands... It's frightening. But at least we have the ability to research now, look up doctors, see their reviews, look at what papers they have written, and where their interest lie.

It is okay to be scared, but if you can, try to focus on what life will be like after the surgery. I was an odd case, so the chances of you having the same issues that I had are slim, especially given that you are out of adolescence now. Take your time to research, learn more about the surgery, understand it. Fusions don't happen because things are sort of wrong. They happen because they need to, which theoretically means whatever is waiting on the other side of that operating room is going to be better than what you have to deal with now. Yes, there will be recovery and pain and it will be challenging. It will test you to your limits. But you will come out stronger from it, and just as importantly, healthier.

PM if you ever, ever need to talk.

Do random books from unkown authors actually sell? I wanna make short stories or a story in general but idk how I'd get it to work. I wrote really well in college but that's MLA format lol

Well, depends how you want to define 'selling'. I've sold 8, so technically yes. Will I make millions? Hahahahaha. No. But it is satisfying to see it out there, even if it goes no where. (Apparently Chicago is the way to go for formatting fiction, at least that is what my copy editor used.)

Honest question. Have you ever allowed a man to ejaculate inside your vagina?

Have you?

No because I'm a man. But I'll do it for you if you want.

I'm sorry, my vagina is currently occupied.

How did you put up with your crazy brother over the years? But seriously all jokes aside he says and I quote "I get to be a minor villain in her next book, hopefully getting gunned down in a Shanghai whorehouse" so does this mean we can expect more books from Kathleen Sawisky?

Oh and congrats on getting the book published, Cheers!

Haha, both my brothers are nutso in their own way, but they've always looked after me. I think I share the best parts of both their personalities. Fortunately, I do not have that brother's hairline. And you can tell him I said that!

You can absolutely expect more books. The Code is a (potentially) 9 book series, so I have a lot of work ahead of me. Also, you can tell him he will be introduced in #2, but the gunning down takes place in #3. And I'm not changing the 'lil Nicky' name. It would be too much of a giveaway if I called the character "Ugly Brother". ;)

Which team do you think is going to win Stanley Cup this year?

Urggh, sore spot. Hold on now. This requires research. I'm not a very good Canadian. My loyalty always has to be with the home team, but the Flames were just a roaring disappointment this year. I'm going to have to go with the Penguins because A) They are penguins and B) Sid the Kid.

Does anyone else on mobile see what I see?

Wondering the same thing. Harvey Birdman Attorney At Law image? Love the show and I thought she was a voice off it at first.

God I wish. I love Harvey Birdman.

Did you not get a brace at 12 to arrest the development of your curvature?

I did actually! The first brace was made via a local Orthopedic surgeon who didn't know what he was doing (according to my later surgeon) and also hated kids. When I finally went to see a specialist at the children's hospital, the new surgeon was aghast at how awful the brace fit. We tried to brace it again but unfortunately it was too little too late.

(Shout out to my Children's Hospital Surgeon, who paid for the brace. As we had to go out of province to see him -wait list in home province being too long- BC medical wouldn't pay for it. My surgeon, recognizing that my mom was trying to raise three kids on her own with no financial support had them make the brace anyways, then wrote to the BC health minister. When the minister refused to cover it, my surgeon paid for it himself. Best surgeon ever.)

What were the major obstacles while you were healing? Bathing, personal care, driving, standing... I'm scheduled for T12 to L5 surgery this fall, (Scoliosis, leg pain) and I'm worried about losing so much of my ability to move.

thanks for this AMA!

Oddly enough I didn't have too many obstacles. The mental impact was a lot more difficult. For a while I needed help putting clothes on, so I have very little if no shame anymore. Standing was difficult, as was walking, but I took it all one step at a time. You'll lose a fair amount of mobility, but if I have one piece of advice it would be to work on things like core strength NOW, so when you are healing, you'll at least have a little bit of support already developed. It might make the healing process easier on you.

Best of luck! PM if you ever need to talk!

My mom has struggled with chronic pain as a result of scoliosis and has also had multiple spinal surgeries. I don't know how many vertebrae are fused, but there's a lot of hardware in there.

After her last surgery, my mom was discharged from the hospital, spent a couple of weeks in rehab, and was sent on her way without a lot of direction. Instead of a good physical therapist, she got a referral to a good "pain management" facility that I describe as a pill mill (in high school is was routine for me to pick up oxy for her without an appointment). Not surprisingly, she has struggled with opioid addiction to the point where it nearly destroyed her marriage.

Was I supposed to ask a question? Right. How did you navigate the recovery process from your surgeries? What advice can you give to others who hope to have successful outcomes?

I'm sorry your mom has so many struggles. That's absolutely awful. :(

I guess the best advice I can give is to try to have an understanding of what you are getting into. Learn the overall impact surgeries of any form can have on your body and mind prior to going under so when you do wake up and go home and feel depressed and emotional and cry all the time, understand that it isn't you but just the trauma of the surgery. You can and will be back to your old self eventually, but as with everything, it takes time.

Learn to take care of yourself, to listen to what your body says and be okay with saying 'no' when people try to badger you into going out or staying for another drink, whatever. Recovery is slow going, and it is as much about understanding yourself as needing the people around you to be understanding to your scenario. It isn't always easy, but sitting around being miserable and not talking about how you feel only makes things worse.

Your book! Why is self-publishing so difficult? Curious because I have a book that needs writing but I just don't even want to write it. I'm sure as heck not going to beg anyone to publish it so it's self-pub all the way. What's the deal there?

Well first off there is no one to tell you that it is worth publishing. You have to be the one to determine that, so there can just be heaps of self-doubt there that can be tricky to battle through.

After you manage to convince yourself its worth it (and it is, trust me. If you have a story to tell, tell it!) and you write it, and you're content with it, you have to hire an editor. No matter how grand you think you might be at editing, you aren't. I mean you in general, not, like, you-you. You might be a professional editor, in which case how much do you cost?

But after you raise the money to hire an editor, and they edit it, and you complete the changes you have to format the damn thing, or and get a cover made professionally. And by the way you can't change a single thing because if the page count changes then the cover has to be adjusted because MATH.

But honestly, the biggest challenge was formatting it properly. Thank goodness CreateSpace had a template so I could have the right margins. Computers are finicky, and I found myself more than once annoyed that the chapter heading on the left page was half an inch lower than a chapter heading on a right page. I never did get it quite right, but I don't think it's too noticeable in the finished product.

It really is a fun process though, because each step you make feels like a huge accomplishment. If I had and agent who sold it off to a publisher who then in turn got someone to do all the hard work for me I wouldn't have had the same opportunities to have a congratulatory beer.

I had a lot of beer near the end of the whole process.

Gonna have to be wine for me. You have your spine: I have my food intolerances. We all have our crosses to bear. (I have scoliosis too but it's not enough to worry about, for which I am truly grateful.)

The thing is, we have publishers in the family. I just don't want to involve them in my endeavors. My bunnies don't go to family vets either. Mind your own business, fam!

Are you an advocate of disciplined writing, as in Every Day for Eight Hours- discipline or do you just spill it as it comes?

Oo writing questions! Fun! I'm torn by this. On the one hand I think of something Neil Gaiman said when he was at our university a couple years ago. Someone asked him about how he writes when he has no inspiration and he said something along the lines of how he has to write, because if he doesn't he wouldn't be a writer but a something elser. So Disciplined writing when you have a fan base, an agent to report to, and expectations, is absolutely necessary.

On the other hand, sometimes you just don't have the drive. And I think that's when you stop writing what you feel you need to write (I need to get this chapter done. I need to make this explosion happen) and you write for yourself (Dear diary, today I had pancakes. They were blueberry.) Either way, you're writing. When I was younger I emailed Gregg Hurwitz to ask for writing advice, and he told me to write every day, even if it is just a sentence. I think I hold a bit more to that than I do the disciplined way of Neil Gaiman.

So... more spillage I guess, with a mop-up afterwards?

What games are you playing right now, and what is your favorite game?

I am a Bioshock fan for life. Always and forever. Can't wait for Overwatch (although I missed the beta). And for some reason I had it in my head that Far Harbor was coming out today so I woke up early to frantically track down Nick Valentine. Yeah. Turns out it is the 19th (dammit). So, I guess I have three more days to find where the hell I left him.

I can always go back and play Earthbound or Final Fantasy VII and VI. Ahh, memories.

What was the scariest part of it all?

Probably saying goodbye to my mom before being taken in to the OR. I'm not sure why (well, I guess the fear that I wouldn't see her again). Surgeries I can deal with. Pain? Meh. But saying goodbye, knowing that for the next 5 to 8 hours she wouldn't be there to hold my hand (even if I was unconscious) or hug me, it was always the scariest part. I cried. Every. damn. time. Even when I was 18.

Why do you consider yourself a survivor?

I'll fully admit that might not have been the best word choice (I just like alliteration.) But on reflection, there is a certain level of survival that comes with major surgeries like that. First off, they are physically moving your spine, and while it was a very common surgery at the time (Harrington rods) it still comes with the possibility of things going pear shaped. A family member of mine who I spoke of in another comment is paralyzed because of her surgery. She did have multiple other issues, but it doesn't change the fact that when you are mucking around with someone's brain, heart, or spine, if things go wrong, they can go very wrong.

I suppose I consider myself a survivor because mentally I've been able to recover from the trauma (because it is certainly traumatic in its own way). Because even though I live with excruciating chronic pain, I haven't let it define my life or keep me from pursuing what I love. It's very easy to let yourself become swallowed up by misery when you have constant, unending pain, and when it is a fight every day to get out of bed, or eat a healthy meal, or act as if everything is okay and you do that all successfully, I think there is a level of survival in that.

But yeah, again, probably not the best word choice.

Have you ever gone into a surgery with a bad feeling and rescheduled it right then and there?

Never. Although I always got butterflies going into, I never felt as if I was going in to my doom. My surgeon always made me feel comfortable and secure. He knew what he was doing and I suppose I just always instinctively trusted him for that. Plus, my mom would have been pissed if I had done that.

My son is 6 years old. He has a 32 degree curve and 18 degree. We're working with a fantastic spinal surgeon out of Denver Children's here in the US. That being said, we are currently just monitoring him for any further movement. Should we see any more in the next 6 months, our next step will be bracing, and then surgery (which we hope we would be able to put off until well into his teens).

I guess my question to you would be whether or not you have any advice to the parent of a child who may be staring down the barrel of this condition? What were things your parents did right, what were things they did wrong, and what were things they didn't do at all that you wish they would have? Thanks!

Unfortunately my dad left right around the same time I was diagnosed, which left me and my mom as a sort of terrible duo when it came to these experiences. She was with me every step of the way. She accepted that my way of dealing with it was to be sarcastic (not mean sarcasm. She wouldn't have allowed it), dark humor, and general goofiness. But not only did she accept it, she joined in. She became as mad as me, and it certainly brought us closer together.

That being said, she never babied me. She never showed pity or excused my behaviour. If I ever acted out (which I rarely did), she made sure that it was still unacceptable even though I was having a hard time of it. She stayed a parent while also becoming my friend, and I am very, very grateful to her for that.

I'm not sure if it would have been easier for my dad to be there, whether they were separated or not. When I was younger I did wish that they were both there, a sort of united front. So to answer your question, my dad fucked up by not being there (five surgeries and you couldn't come to the hospital once to visit me? Dick.), but my mom made up for it in strides.

Hi there,

Are you familiar with fusion-less options? I had no idea that patients had more than one fusion surgery. Imagined fusing once would stop growth. Sounds horrible to have to endure such a long road of surgery, healing, and pain.

My daughter has idiopathic juvenile scoliosis and we have decided to avoid fusion and will be doing spinal tethering in lieu.

When I was going through the ringer for it the only two options available were bracing and fusion. We tried one and that didn't go over so well. But... neither did the second...

From what I've been told there are a huge number of different procedures that have been developed in the last few years. I was actually about six months too early to be part of a procedure where they used a rod that they would lengthen every few months in lieu of fusing. It sounds badass. I haven't even heard of spinal tethering! Medical advancements are absolutely amazing.

How did you realise you had to go for another surgery? How long between operations was there?

I noticed when I was leaning back in a hair at school and felt a strange sort of bump grinding in. Turns out it was bits of metal shifting out of place. There was about a year between surgery 1 and 2, then... let me think... Another year after that. Then about a year and a half and then... another year? It's a bit of a blur now. I had my last surgery at 18, that's all I can really remember!

Hey Kathleen, I saw that I another comment you said you have a thoracoplasty to correct deformed ribs. You and I have(had?) a similar type and severity of scoliosis and I was wondering if you could tell me what the results are like. I'm having a thoracoplasty with my second fusion, which is next month. I'm 16 at the moment and as you can imagine I'm very worried about the aesthetics after the procedure (typical teenage girl right). I have be struggling to find answers about this because most doctors don't seem worried with how it looks, just that it is stable and doesn't cause any pain.

I was worried about it as well, but they actually went in through my original fusion scar! The worst thing that has happened is that my scar is quite noticeable now, and probably won't fade as well as a regular scar. For the most part my kyphosis was cleaned right up (although thanks to my curve still moving, it is back a bit.)

Honestly, embrace those deformities. My scar is an awesome conversation starter, and when people hear what you have been through, they tend to respect you a lot more!

What kind of music do you listen to? Have you ever thought about listening to some John Coltrane while in recovery?

I actually went through a jazz phase around my second surgery! I listened to a lot of Ella Fitzgerald and Coltrane during that time. It is amazing how music can whisk you away from the hospital. It was the only way I could sleep at night (because of all the beeps and the nurses, and the one time the naked old man stumbled into the room.)

Well this is awkward. I've had 4 spinal surgeries(fusion, rods, infection, and bone graft) and I'm looking to self publish a college advice book soon. What do you think is the best way to go about the whole process of talking to publishers or to self publish and get a book out there? Also how gnarly are your scars cause mine gathers quite a bit of notice?

I gave up on talking to publishers quite quickly because I realized I was really writing for my own enjoyment, and publishing just so I could say it was done and move on. But if you have a unique concept, pitching to publishers and agents can be a lot of fun, albeit time consuming!

I'm working with the theory that if you can drive up enough attention (through social media, through giveaways on goodreads and Amazon), eventually you can take that success and show publishers that you are worth their time and effort. At the end of the day they are in the business to make money, after all.

I love my scar. 17 inches of badassery. I told my surgeon once that he should just install a zipper. Didn't go for it for some reason...

What does it feel like losing the ability to bend? What have you stopped doing because of this, and what seems really hard to do?

I'm a lot more aware of my limitations now. If I go out rollerblading (well, try to) I have to be careful not to have any epic crashes. Ironically enough, I don't have the stability needed to avoid things like that, so if something happens and I need to Matrix it out of the way, I am fucked.

Things that seem hard to do... Putting on shoes and socks is honestly infuriating. If I'm having a good day then I only need to sit down and pull up my leg to do it. If I'm having a bad day every movement is so much stiffer. Every step is a new adventure in pain. And it's just flippin' shoes and socks. Plus side is that after that is done I feel invincible. Until I have to Matrix bend my way out of a gun fight. Then I'm boned.

This was a question asked of Einstein by a little boy so think carefully;

What did you have for lunch today and was it good?

Okay, update. I had homemade cherry chip cake with almond whipped cream, and it was delicious.

Can I get back to you after lunch time?

As someone who had just one spine surgery (removing benign tumor from inside T8), I cannot imagine having more. The recovery, which was NOT as bad as it could be (started lifting weights after two months), absolutely sucked.

How would you say recovery was? Any nerve issues that arose from surgery? How is your pain now?

Recovery was actually fairly tame (from what I remember). Nerve issues, oh yeah. I have quite a few numb patches on my back and around my belly button. The biggest issue has come with my lower two vertebrae (which aren't fused) twisting slightly and pinching the nerves. Fortunately the Cymbalta I'm on helps with that. Unfortunately there is also a lot of mechanical pain, which I am prescribed opiates to help with. Today is a 7 on the pain scale. That might increase a bit because I can feel my silly muscle starting to spasm. SILLY MUSCLE. I shall cut it out with a straight razor.

I'm here promoting a book that won't sell, ask me anything.

Sound about right?

I wrote these words. Buy these words I wrote.

My brother has scoliosis that was caused by Friedrich's ataxia, which is a degenerative disease similar to muscular dystrophy. Currently his spine has a 45 degree curve and the doctors he's seeing have mentioned surgery.

He seems to be okay with the idea of surgery, but it's a scary proposition. He's not going to get any better on his own obviously, and we all want to see him live as good of a life as he can. One day he'll most likely be wheelchair bound, but his progression so far has been slower than average, which is encouraging news.

If he does go through with the surgery, how long of a recovery is typical? What kind of things can we do to help him after his surgery?

Also, I see you're a flames fan. I live in Edmonton, here's hoping that both our teams improve and we can get a competitive battle of Alberta going again. Maybe even steal a couple playoff spots from the California teams :)

Yeah what is up with the Oilers and the Flames? All the Canadian players are in the States apparently. Wth.

I don't know anything about Friedrich's ataxia, so I'm sure what the surgery would be like for him, as well as what the recovery would be like. But as I said to someone else, the best thing you as a brother can do is support him. Help him out when it comes to the rehab, be patient with him while his body adjusts (anasthesia can do a number on people's emotions/mental state for months after surgery. I was constantly crying for no reason, then I would be mad, then happy. It was very neurotic.) Try not to resort to brotherly teasing if you can avoid it. Don't aggravate arguments and give him time to get back to his old self. I'm really not familiar with the newer treatments these days, so I can't say for sure what healing will be like. Doing some research together, learning more about it as a family might be a good way to make sure everyone is on the same page. Sort of create a... urgh safe space to talk about it prior to the surgery.

Recovery for me was about 4 months for my body to settle and I think about a year for the fusion to be fully stabilized (I might be wrong though. Those years are sort of a blur.)

Let me know how he does!

Hi! I'm in my early 30's and have scoliosis and lordosis. I've been wondering what life is like AFTER spinal fusion. What is your day to day pain like? And your mobility? Can you move fairly easy? How long can you stand before its uncomfortable? Things like that.

It's actually pretty normal for the most part. Keep in mind that I have very little recollection of life before a fusion. I can stand for about 5 minutes before I am aware of pain, an hour before I am constantly feeling it, and probably two hours before I need to sit down. It does depend on whether or not I am stationary or moving around. If I'm working the cash counter at the book store I usually feel the pain a lot sooner than when I am running around doing other things. All in all I move fairly easily. I can't do things like bend over to tie my shoes, and for some reason walking in a straight line is tricky. I tend to trip over my feet which is either because of my spine or the drugs. Jury is out on that one.

Day to day pain depends. I average around a 7 to an 8 on the pain scale by the end of the day. Today is a flare up day so I am already at a 7.5. But mentally it is a good day so I'm not really dwelling on it all that much!

How far are we from being able to completely replace our spines? Is it possible, and docs are just afraid, or is it impossible? Back problems is super super common in Humans. Need replaceable!

That's something I've wondered before. I would guess the major issue is the various nerves that come off of the spine through the itty bitty parts of our vertebrae. I tried to convince my doc to use a vertebrae I found from an elk on my uncle's farm one time as a replacement, but he didn't seem to go for it.

I did get an amazing book on back pain a while ago on the advice of a friend and it has definitely helped with my ability to stand. Quite frankly I'd still just like to replace the whole darn thing with a big ol' mech-suit or something. Cybernetic me up, Doc!

Do you like Spinal Tap?

This is Spinal Tap.

Edit: But seriously, I'm not allowed to have spinal taps.

Why not? Aside from the curvature of the spine, is there also a weakness of the spinal cord or some other issue that makes a spinal tap more dangerous for you?

From what I understand the fusion prevents them from doing it. I can't get an epidural in the spine either. That being said, I don't know if you can do a spinal tap on the upper portion of a spine. I was just told "never get a spinal tap", "you have to have a C-section", and "please stop crying now."

Fellow scoliosis person - had 2 surgeries. I went from a 40 to a 25 to a 73 within 20 months, had my most recent fusion and I'm back to 29. Question is, how old are you and has pain continued significantly after your procedure? I was diagnosed at 2 with it and have occasional pain.

I hate to put it this way but I am SO glad to hear I am not the only one whose curve went wonky so fast. I'm 27 next month (diagnosed at 13.)

I have chronic pain now, partially as a result of the last two vertebrae that weren't fused curving as well as twisting slightly. Arthritis due to them taking the weight of the fusion, and nerve pain from the twisting causing some nerves to be all dippy.

what is your favourite colour?

Blue, no yellow.

Actually it is blue. It is the colour of the sky, and the colour of the sea, and the colour of my eyes. Blue is the colour of a man's lips when you choke hi- wait. no. Never mind. Forget that.

My wife has scoliosis, how should I prepare for the future in order to best support her?

The best thing I can suggest is understanding on both your parts. Understanding and patience. If she ends up with a lot of pain, it may impact her mood, and unfortunately when pain strikes it can be difficult to be pragmatic about it. I still get black moods every so often, and I forget that my husband cannot read my mind and I need to tell him, calmly and clearly, that I am in pain. That being said, sometimes I need him to understand that when I say "I am in pain" that is it. There is pain. It sucks. That's the end of it. Give me a hug, tell me you love me, and snuggle the hell out of me. If you and your wife like to banter or tease each other, learn to read the situation and know when you back off. It isn't a sign of giving up power, or letting her get away with being moody. It's respectful and kind. Yeah, that's it. When she has a tough time with pain treat her love and gentleness.

Open communication all the way.

How is your mobility? So anything like; can you turn/tilt your head, can you bend, etc...

Fortunately my next isn't impacted, but the fusion does start at T1. So no bending for me! I miss being able to tie my shoes while standing up. As well, because of the curve and the impact it has on my muscles, I'm not able to bend side to side as well. Right is no problem, but don't ask me to bend to the left.

Are you me? Because it's the exact same way here. Can you drive a car? Not being able to bend or turn is severely limiting and I had to learn a whole slew of tricks just to be able to drive safely.

I actually never got my license. This summer, I swear I will. Honest. It was always "oh, I have to have another surgery" or "Oh, recovery period" or "Oh, I live in a big city with excellent transit." I have to admit, I'm not looking forward to shoulder checking.

I got that shit once, 5 years ago, how the fuck do you have to have it 5 times???

Things went very pear shaped. I should specify that only one was a fusion, 3 were instrumentation removals (spine continued to curve and twist, popping out screws and rods), and one was a thoracoplasty and instrumentation removal. I will have one more fusion, probably within the next five years, to fuse the rest of my lower spine. But I'm trying to put that off as long as possible.

Can you get a marijuana prescription for your chronic pain? If so would you be smoking the chronic for the chronic?

I imagine I probably could. I know people who have marijuana prescriptions for back pain that is less severe than mine, however I've never pursued it. I'm on some pretty intense opiates at the moment that help with the overall pain. Unfortunately with chronic pain, it becomes as much about dealing with it mentally as dealing with the physical aspects of it. I've taken courses at our local Chronic Pain center and learned how to live with the condition, number one being accepting that pain will always be there in some form or another.

I don't know if I'm interested in trying marijuana. I guess it couldn't hurt, but I'm also very aware that going to my family doctor and saying "Hey, I want to try a blunt (is that what they are called? Oh my god, I am so lame.) to help with the pain" would come off as... odd. Plus I hate the smell of it. I'm not sure if baked goodies or capsules would offer the same benefit. If they did then I would be all over trying that. One of my hobbies is singing so I'm not really keen on smoking anything if I can avoid it.

So many people do not understand how insidious chronic pain is. And if you are on opiates - oh, how they love to pontificate that its dangerous, or you will become an "addict" (they do not comprehend the difference b/t building a tolerance and being an addict, the latter of which means you are abusing your drugs). Opiates enable me to live a life where I am not actively planning suicide. Without them, I'd have long ago since killed myself. There is so much misinformation out there, and just the other day I had a former drug addict cautioning me that opiates are inherently dangerous, merely based on the fact that he knew someone who made her own choice to start taking heroin instead of sticking with her prescription pills.

Its the misinformation like that that perpetuates the myth that opiates are evil, and makes it much harder for people like you and me, who have a legitimate illness or injury and are genuinely suffering from severe, chronic pain, to get our meds.

Congratulations on your book! That is quite an accomplishment. As you say, chronic pain does not just destroy you physically, but messed with your mind and opens up a hidden door in a dark corner that your brain was never meant to make accessible. Chronic pain takes on a life form of its own if not managed.

I hope you continue to heal well from your surgeries. Its truly amazing that with 5 such invasive and major surgeries you are able to do what you can today.

As for MJ: I"ve had a similar experience as you. It just got me tired, loopy and really did nothing for the pain. Opiates seem to work the best.

Wishing you continued improvement in your health.

This, a hundred times over. It seems like if they can't see a reason for the pain, they assume it isn't there. But no, no today is a Defcon 7 pain day.

If you are in a medical marijuana state, you can get things like edibles and drops, as well as strains of cannabis that are low in THC (the part that makes you feel high).

Considering you are on powerful opioids, looking at a more benign pain management options would probably help you long term.

That's good to know! I'm fortunate that the amount of I have to take in a day is still on the low end (low end of intense drugs probably still isn't great...) And one fortunate aspect is that the major issue I'm dealing with currently is actually nerve pain, so I take Cymbalta for that, which is actually an anti-depressant of all things! (The way drugs can be made for one condition and benefit another is absolutely fascinating.) As I get older, however, it will become more about mechanical pain, and then I'll have to look over my options some more.

Just jumping in here to say that from what I've read thc works well with opiates as it increases the effect so you need lower doses of your pain meds. No citation, it's just something I've read here and there which stuck in my mind.

Yeah I'm beginning to think I might have to look into is given how many people with scoliosis and other spinal problems here have had a positive response to it!

Came here specifically to see if any of my fellow wiggly-spined comrades had talked to you about this. I'm currently 20 and sitting at about 27° in the lumbar region, because of cerebral palsy and a ridiculous case of spasticity (muscle cramps forever and way too many muscle tears and strains, yay!). Yoga and cannabis products have made my quality of life a fuck ton better; I can actually eat, even with muscle relaxers and spasticity deciding to play tug of war with my organs and my spine trying to push the lot through my abdominal wall. I've had opiates and consider them a fucking blessing, but I'm still fighting for a decent script (they tried me on tramadol and it hasn't done shit).

Urgh, Tramadol. That was the worst thing to come off of. I was on it about five years ago before nerve pain started to kick in and had to switch it up. I can't even imagine what living with scoliosis and CP would be like. You've got a freaking awesome attitude (Wiggly Spined Comrades is how I am going to refer to anyone with scoliosis from now on. Love it!)

I have had JIA since I was very young and am in a similar indictment to you regarding treating pain.

If you are lucky enough to live in a medical state, I highly recommend looking into it. There are strains and concentrates that won't get you "high" but will help with pain (low THC %, high levels of CBD). It's not the same type of relief compared to hydrocodone or oxycodone, which basically makes you forgot/not care you're in pain. I find I sometimes will agitate a flare up on an opiate since I will push myself too far and it hurts worse once the pain meds wear off. With cannabis, you still know the pain is there except it takes the edge off.

If you want to know more or have any questions, I can go on or just send a pm. Hope you are feeling well :).

That's so neat that you mention the forget/not care you are in pain part of opiates. That is exactly how I describe it. Sure, I am in pain right now. It sucks, it's awful, but... I also have cake, and cake is good. I'll definitely have to pick your brain later about medicinal THC. I live in Canada, so it is an option. One thing I've never been able to get over mentally is approaching my doctor and saying "Hey, I've heard this might help and I want to try it." But it is certainly worth a shot.

Do you think it is odd to use the word survivor to describe someone who went through a process with a low mortality rate? Should I say I am a driving to work survivor?

I think splitting hairs about something like that is probably a waste of everyone's time. But yeah, sure, if you want to be a driving to work survivor then embrace it. Who am I to argue with that?