waking up is hard to do...

Sleepy time with Charlie
Today is my 8 month anniversary. I really thought this year would go by a lot more slowly. The last few years have often felt so long and slow, I thought this one would be the slowest of all. But I think that because I've been able to work so much more, and have so many things to look forward to, I am hardly aware of the time rushing by. While my pain at the beginning of this year was the worst pain I've ever experienced in my life, my recovery as a whole has been astoundingly smooth and encouraging.

However, at 8 months post-op, I am aware of new kinds of pain, and the feeling that my nerves are finally starting to "wake up." Did you know nerves are one of the slowest healing parts of our bodies? That is in part because they consist of one long cell that stretches from the low back to the bottom of your feet, or your neck to your hands. That is a lot of territory to cover when healing, and they recover from damage at the rate of about a millimeter per day, for a total of one inch per month. According to the Columbia University Medical Center, this is what happens when nerves are damaged, or in my case, severed from my T4 Vertebra to my L4 Vertebra:

"When a peripheral nerve is cut, the axon segments distal to the injury (furthest away from the spinal cord) die off in a process called “Wallerian degeneration.” When the nerve is repaired, the axons in the proximal segment (closest to the spinal cord) regrow into the distal, denervated segment. This growth occurs at a rate of about 1 mm per day. This translates roughly to 1 inch per month, or 1 foot per year. Once the axons regrow back into the denervated muscles, the muscles will begin to function again. During the time it takes for the axons to regrow into the muscles, a process that can take many months, or even years..."

So it is no wonder that at 8 months post-op, I am just now starting to get feeling in my back again. Don't get me wrong, I have had pain, achiness, and electrical shock-feeling nerve pain throughout the recovery. But my skin covering my spinal chord and the vast majority of my back, and muscles closest to my spine have been completely numb since the surgery. When I first came home from the hospital, it felt almost like I had a heavy, dull backpack on. It moved when I moved, but I couldn't feel it move. It is hard to describe how you can be both numb and in pain. Try to imagine what it would feel like if your leg feel asleep, and apply that feeling to your back muscles...then imagine the first pins and needles pain you get when your leg, or in this case your back, starts to wake up. Those first sharp pains are deep within the limb, and similarly I have had those deep pings and pains, but the middle and top layers have been completely "asleep" for the last 8 months.

I am feeling my shoulder muscles ache for the first time in 8 months. I can tell when I've had a work out, or carried something the wrong way now because I can feel my back should muscles ache and "pull" against the rods. The muscles don't actually pull against the rods, it's just a sensation of very, very tight and weak muscles. But, I am glad to feel that pain, because it means my shoulder and low back muscles are starting to heal, or "wake up." I may never get full feeling in all of my skin or all the muscles around the spine. It can take years for nerves to heal, and sometimes they never heal completely. The skin that covers the top of my left thigh is completely numb, and has been that way since my first surgery back in 2007. The nerves that run to that portion of my leg were too damaged by my herniated disc to handle the surgery that was meant to help them. The result was when the nerves were manipulated during that operation, they were damaged too much to be able to heal.

Thankfully, most of the nerves that were severed and manipulated during this major fusion were healthy and have been healing well. It just takes time. I get more burning and phantom itching now than I did immediately following the surgery. The itching is deep within the muscles and skin, and doesn't actually have anything to do with my skin. It has to do with the regenerating nerves sending signals to each other, in an attempt to heal. They are a good sign, even though it is incredibly irrritating to be attacked without warning at any time during the day or night with what feels like a million little ants inside my skin, all biting at the same time. I also get more shooting pains now, a feeling of lighting shooting through my muscles. It strikes suddenly with great intensity, and then it's gone. I've startled my husband more than a few times when I've gasped loudly when I get "struck" with that pain.

I just try to remind myself when that happens, or whenever I can feel that itching or my nerves waking up, that they are signals of healing. I want to feel those pains because it means my body is still fighting to heal itself, and I want to heal! I am thankful for those reminders too, because sometimes I forget that I need to take it easy still, even at 8 months post-op. I need to help my body to win the war, and build my muscles and strength back up slowly and carefully.

8 months of healing down, 4 more to go before I get to a full year of recovery. And from what I've heard from other post-op scoliosis patients, it could be 2 years before I see the full extent of my recovery. But if those 4 months and 1 year go by like these last 8 months, I won't mind that at all.

stern and splendid...

"Try to exclude the possibility of suffering which the order of nature and the existence of free-wills involve, and you find that you have excluded life itself." 
C.S. Lewis---The Problem of Pain

Recently I have heard some stories through the forum that have put my own experience in perspective. The first is a young man in his early 20's who had the surgery over a year and a half ago, and has just found out he will most likely have to have all of his hardware removed, and the whole surgery done over again. I can't imagine what he is going through emotionally right now. It was hard to have 4 surgeries in four years, but to have to have what I had done to me last December done all over again in less than 2 years, is horrifying. It goes to show that even if you're young, strong, and healthy, there are no guarantees with this surgery. It is not a ironclad fix, and it is certainly not an overnight one.

The second story is of a lovely lady in her 40's who has curves much more advanced than mine were, and is in a lot of pain and discomfort. She had finally made the hard decision to go ahead and have the surgery and even set a date...only to find out that her bones may be too soft to have the surgery and had the surgeon cancel the date.

I look at their situations and my heart goes out to them. I feel so blessed, so rich in my current success. Yes, I have had my own struggles, but I am not so naive to think that I am the only one who suffers or that I have suffered the most by any stretch of the imagination. And in many ways it is foolish to compare my pain with theirs, as everyone has a different strength and a different struggle. I could look jealously at the women my age having babies and doing power yoga, and assume that their lives are so perfect and easy because they don't have the genetic disease that I do. Just because you can't see someone's pain or struggle on the outside, or even in their circumstances, doesn't mean it's not there.

But what happens when things go wrong...and horribly wrong? How do you move forward with your life? How do you deal with the crushing blow of a failure of that magnitude? Do you give in, and just wallow in your misery? Do you fight your circumstance, never giving up the hope that it could somehow be better, or different? Or do you accept the disappointment and pain as something you have to live with, and try to adjust your life to "make the best of it"?

Of course the obvious answer to rule out would be the "wallowing in your own misery" option. But I do think there is a time and a place to mourn over what you could have had, or what you hoped you could have been without the hardship that you face. I had to mourn over the fact that I would never have a normal spine. I had to take days and moments, where I could confess the truth that was in my heart. And that truth was I was sad that my disease was so insidious, so all consuming. I was sad that I couldn't move or exercise without pain. I hated that it made me have to think about every single choice I made each day, from how much house work I could do, to how long I could sit in a chair at a friend's house or in the car, or walk in the grocery store. It affected my desire for children, and it has affected my husband, and some friendships too. But once I had mourned that life, a life that never really existed anyway, I was able to move out of that sadness into a plan of action. I think it would be very unwise to take on a challenge such as this surgery before one has dealt with these feelings...whatever one is sad over loosing, or sad over having to have changed. It can be tempting to think that this surgery (or whatever equivalent in your life it may be) could "fix" the problem, and restore to you what you have lost or are scared to lose. The surgery does not fix or restore a past life. It brings about a new life, filled with new options and new blessings, as well as many challenges. But it cannot give you a life without scoliosis. 


I believe in fighting for a better world. Not just in big picture things, like feeding the poor or preserving our Earth. I believe in not accepting things that are ruining our lives as a matter of fact. I believe it is vital for our physical and emotional health to keep pushing, keep searching until we find some way to improve our lot. I'm not talking about a "fix", but anything that will help us live our daily lives to the fullest. When I had seen over 6 surgeons, and each of them had turned me away with such helpful comments like "Well, you're going to have to find a way to live with the pain," I was incredibly discouraged. But instead of giving up, and accepting their prognosis, I kept fighting. I kept going until I found someone to help me. If I hadn't kept fighting, I would have eventually lost the use of my left leg, probably before I was 30. Here I am today, healthy and getting stronger every day. I am not "fixed", my pain is still there, but my condition is vastly improved because I never gave up.

Sometimes, fighting with everything that you have, may not be enough. Sometimes, after every possible option and treatment and procedure and test known to man has been done...it may be time to find a way to live with what you have. It takes a lot of strength and a lot of grace to endure the loss of physical ability, and a lot more to endure something like the loss of a friend or family member. Some things can't be put back, some things can't be undone. I don't pretend to understand why we have to suffer the way many of us do, or why there is so much pain and heartache in the world. I do believe there is a reason, even in the ugliest and most painful circumstance...I believe evil can be transformed and redeemed into something beautiful because I've seen it happen in my own life...but I can't pretend I understand the hows and whys of it all. When we are forced to "live with it" how do you live a life that is beautiful despite the ugliness of the pain that permeates your circumstances? Again, I'd say it takes strength and grace. And for myself, I have to have Someone Who can transform it for me.


"Love is something more stern and splendid than mere kindness."
C.S. Lewis--The Problem of Pain

forget and not slow down...

In life, many times it's a good thing (and forgive me as I quote a Relient K song) to forget and not slow down. It's good not to dwell too long on things that you can't change now anyway, and move forward and live your life as fully as you can, with what you have, where you are.

But, I think there are some things in life that are good to remember, especially if they changed your life for the better. If you have been tested, and you have been challenged to the very core, but you manage to come out stronger and wiser and with greater appreciation for the blessings you enjoy every day...well...those things should be remembered.

I feel that way about my surgery. As much as thinking about those initial months of recovery make my entire body involuntarily cringe, or how the thought of eating bananas makes my stomach sick, or the sound of monotonous electronic beeping makes me feel queasy, I do try to remind myself of what I went through.

I marvel at the amazing work that was done to my spine. The technology and the skill that it takes to manipulate an entire spine that has been misshaped and rotated are vastly under-appreciated and under-noted. Here is a great animation I just found that shows a greater amount of the fusion than the video I posted months ago:


If you are very brave, and want to see the gory details, here is a very short clip of a scoliosis surgery I found on YouTube. It isn't me, but to see in action exactly how they manipulate the spine leaves me both sick and astounded. I couldn't watch this pre-op, but now that I've had 7 months to adjust to the idea that they really did do that to me, and I survived, well, I can look at it with the interest of a "behind the scenes" clip on a DVD of a scary movie. Just pretend it's an episode of House, and it's all fake, and you'll be able to get through at least 20 to 30 of the 50 seconds:




YIKES! It is amazing and like a bloody horror movie at the same time. All you need are 7 hours, 26 screws, and 2 rods, and you too can have an "adamantium" spine to make Wolverine jealous.

I am not going to be forgetting this anytime soon...



my mind is on the blink...

Surgery Brain: The technical term for what happens to your brain after your body has undergone an intense trauma; ie. the complete rearranging of your torso, muscles, bones, and insides. Not to be confused with the similar and more well-known condition, "Mommy Brain." While similar to Mommy Brain, which some feel to be a permanent mental state after giving birth to a child, Surgery Brain will hopefully only last a year or two post scoliosis surgery. Surgery Brain occurs when the body uses all of its energy and resources to promote healing to said body parts that have undergone "interior redecorating", and forgets about the brain. The brain is now functioning on what little sleep it manages to get after said achy body finally finds a comfortable enough position to sleep in for 5 to 6 hours at a time. Brain may or may not be able to retain information at the speed it once did; ie. brain will never be entirely sure whether or not hands did in fact wash hair or not, and to be on the safe side, will tell hands, to wash again...and perhaps again.*

While the term may be made up, I really am wrestling with a brain that can't always seem to process information or hold short term memory the way I used to. I am doing so well over all, I often become engrossed in my work and forget about my back and the surgery for hours on end. It's only after I've had to recount the inventory boxes for the 3rd time because I can't keep the number in my head long enough to impute it into the computer that I remember....oh yeah....my body is still focused on healing, give yourself a break! While I've gone on to thinking about work and adoption, trips and groceries, my body is still working overtime to heal. I do get overwhelmed a little more easily, and deadlines give me a lot more stress than I care to admit. By 3 or 4 in the afternoon, I can't seem to recall what work I did that morning, and the idea of another project coming in last minute can make me feel like I was just asked to whip together a Ferrari in 30 minutes or less.

I also still struggle with feeling like I can't get enough sleep, and I know not getting enough sleep affects my thinking and attitude, too. I do sleep a lot better at 7 months post-op than I did at say 4 or 5, but there are still many nights where my body is sore or tense. I still get up occasionally at 2 or 3 a.m. to take a hot shower to loosen my muscles enough so I can relax and sleep. So I'm sure some of my foggy brain syndrome comes from the inconsistent amount of sleep I get, and then heap in a large dose of a body working to grow bone...well, let's just say I woke up this morning with John Lennon's voice singing "I'm so tired, I haven't slept a wink...." in my head.

It's amazing to be able to forget about the surgery, and that I'm doing well enough at this point to be able to do that for any amount of time. But my body sure doesn't forget about it, even if it can't remember whether I've put deodorant on or not (when in doubt, reapply!). And the fact that I'm able to become engrossed in my work, without horrible pain in my legs is a miracle. I just need to be more careful about taking breaks, and eating at the correct meal times and generally resting when I'm tired. I tend to push myself on, even when my body is putting on the brakes. Rather than listening to those screeching tires, I usually push past achy muscles and trouble focusing. I only realize it at the end of the day when I finally step away from my office, and realize I feel like I've been hit by a truck and can't fix dinner or fold laundry because all I can manage to do is lay on the couch and try to stay awake until a reasonable bedtime.

I've had people say things like "So, you're all good now right?" or (my personal favorite) "Your back is all fixed now, it must be great!" Yes, to some degree, I'm "all good" and my back and body are doing amazing considering the permanent metal art installation I had done 7 months ago. But sometimes I want to say to those well meaning people, "um, no. I'm not 'all better' now. I know I look normal on the outside, but inside I have 13 vertebra that are working around the clock to grow bone and fuse around the 26 screws that were drilled into them. Oh, and my lungs are still freaking out after they were gently "moved" around when they untwisted my severely rotated spine. And my muscles....oh my muscles!....have you ever had a muscle cramp that started in your lower abdomen and then ran all the way around to your back and up over those 26 screws and 2 rods into your left shoulder and clamp down so your entire back is cramped so tight you swore the rods were gonna pop out through your skin? But aside from that, I'm "all good now."

But... I am doing well, and I do appreciate how smoothly my recovery has gone. I'm thankful that I can work for hours on end before I'm reminded of what I've been through. I couldn't work for more than 30 minutes prior to this surgery, before I was distracted by burning pain. So I'll take the Surgery Brain, the exhaustion, the muscle cramps and the frustration of not being able to reach down quickly and grab my pen off the floor. I may not be "all good" now, and I may never be "fixed" this side of heaven, but I certainly am better off than I was 7 months ago, and that's something I won't forget....even with surgery brain..


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*Disclaimer: any definitions found in this blog post are in no way meant to be a true medical definition. I never went to medical school, and I certainly never became a doctor. If you were under that impression, thanks for thinking I'm that smart.

the ugly truth...

Okay, so this post is strictly for all my scoliosis readers. The rest of you non-scoli's, please ignore.
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Update: I have added some helpful PDF documents to my "Preparing For Scoliosis Surgery and Why I Did It Now" section of my blog. You can click on them and print them out for your reference.
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One of the things I was least prepared for before my first and second surgery were how awful the side effects are from the massive amounts of drugs that will be pumped into your body. Every single one of the pain killers (along with the 7 hours of anesthesia you will have) cause constipation. There is no way around it. You will be constipated, and probably bloated to the point of pain. But there is hope my friends...and if you are prepared for this battle, it is much easier to win.

Here are my suggestions after recovering from 4 spinal surgeries for getting your bowels moving.

Please note, everyone is different, and it is extremely important that you do not strip your stomach/digestive system by over dosing on these “motivators.” Be careful, and try a little at a time of the medications (eat as much natural fiber as possible, you can’t “overdose” on applesauce, prune juice, or Fiber One cereal). None of these methods are that pleasant, but the more fiber you eat, the better. You will most likely be bloated, and that bloating can be as painful as the pain from your surgery. The sooner you get your bowels moving, and the bloating under control, the better.

****The NUMBER ONE WAY to fight constipation is WALKING. Walk as much as you can, I know it’s hard those first few weeks, but it is ESSENTIAL to helping your bowels start moving.****

Start out with the high fiber diet (especially the prune juice), and the Dulcolax (laxative). Go to the stronger over the counter “helpers” from there if that is not enough.

After trying all of the below, and you are STILL unable to go to the bathroom for more than a day, CALL YOUR DR. It is dangerous and can cause serious health issues if you are completely blocked for too long. You need to go, at least a little, EVERY DAY.
Things to Try:
LOTS OF WATER and GatorAide
PRUNE JUICE (drink as much as you can, 3 large glasses a day at least)
Dulcolax
Fiber One Cereal (the higher the percentage the better) Try to eat it 3 times a day.
Applesauce
Enemas
Suppositories
Miralax
Colace
Milk of Magnesia


TIPS:

1. When taking the heavy pain killers like Oxycodone or Hydrocodone, take a Colace (stool softener) with every dose. It helps fight the massive amount of constipating side effects of the drug you are taking. You may even need the dulcolax (laxative) in the beginning.

2. Try to avoid eating Fiber foods that cause gas and bloating, such as BeneFiber, broccoli, cauliflower, and beans.  Although those examples are rich in fiber, there are some types of fiber that cause more gas than others, and can make your bloating worse.
-Some examples of foods that don’t cause as much gas or bloating are FiberOne Cereals, Applesauce, and Prunes.

3. Even after you’ve gotten your bowels moving, continue to take either the colace or dulcolax (depending on how you’re doing) every day. Keep drinking at least a glass or two of prune juice every day. The key to not getting “blocked” again is staying on top of the problem, by continuing to eat lots and lots of fiber. As long as you’re on the heavy pain killers, keep eating that high fiber diet and you should be able to keep yourself “moving along” with a lot less discomfort.

4. Remember, the NUMBER ONE side effect of ALL the drugs you were on in the hospital, and are taking at home is CONSTIPATION. Just because you're going to the bathroom, doesn't mean you're not constipated. Until you have painless and "regular" bowel movements, you are constipated. 

5. And finally, KEEP WALKING. Even if it’s just 5 minutes at a time. Walking is essential to a healthy, and less bloated, recovery.

P.S. You can click here to view this blog entry as a PDF file that you can print.

7 Months Post-Op!

Another month, another anniversary...and more progress! Here is where I am at 7 months post-op:

-I am only taking gabapentin for my residual nerve pain, 2 times a day

-I am no longer taking any muscle relaxer, (which was my goal last month!)

-The massage therapy I've been getting every other week has really reduced the tightness in my shoulders, and I am having less and less discomfort and pain in my left "problem" shoulder.

-I am able to roll completely over (I know, I'm a big baby now!) which I'm excited to try out in a pool, to try swimming. I didn't want to try swimming until I could easily roll over, and roll back up. It also allows my massage therapist to reach my back for the first time in 7 months, and she has been doing very, very gently massage that has really relaxed my back muscles and eased their tension.

-I am working longer hours, which means I'm sitting in my office chair for hours and hours each day. While my nerve pain is still most irritated when I do this, the moment I stop sitting there the pain goes away. Before surgery, if I sat in any chair, I would have bad pain, that would last for hours, or sometimes the rest of the entire day, well after I got up from that chair. So while it's still there, I know it's getting better because of the length of time I'm able to tolerate now, and the fact that it doesn't linger on and on. I almost never have pain sitting in any other chair now. Restaurants, coffee shops, movie theaters, or cars, it doesn't matter.

Charlie fresh out of the "tub" and none too pleased 
-Because all that physical therapy is paying off, I'm a lot more flexible at this point ! I can reach the floor by carefully squatting. It doesn't hurt and I'm strong enough now to balance that way if I need to. A few months ago, it was too hard to do this, and I didn't have the muscle strength to balance. It's funny how I almost never notice my fusion except when I do something like that. I now realize how much having a flexible spine goes into balancing, when I feel myself leaning dangerously to the side or to the back, and it takes all my might not to topple over like a pine tree. Building up my core body strength has really helped with movements like that. The only other time I really notice my fusion is when I give my dog a bath. The sink is just a little too low for me to reach down into it. I caught myself on Saturday trying to bend over to shampoo Charlie, and realized I had to bend at the knees when my back refused to budge. It must be the way a scarecrow feels! Like a scarecrow, I'm attached to these rods that keep me completely straight. But, like I said, I don't notice that feeling very often, and when I do, I just find a new way to do what I did the old bendy way.

-I do get worn out still, pretty easily. But I definitely have more stamina than a month ago. When I have a bad, or even just a very tired day, I just make sure to baby myself and not "push" myself. My body is still healing, and if it needs a day here and there to just rest, well, that's okay.

Overall, I'm doing wonderfully. I look back at December 27th and can't believe how far I've come since that scary day. It is so freeing not to have that surgery hanging over me, and to be able to go out and live my life again. Before I know it, it'll be a year behind me and I'll be even stronger than I am now.