Happy Valentine's Day...

Well...a miracle has happened in our lives. We are now parents to a happy, healthy baby boy. I am thrilled to say I am exhausted from being up all night, changing diapers, and feeding a hungry baby. I will share all the exciting details when I get another minute free...but for now I am busy holding him as much as possible. I have waited too long for him to spend my time doing anything else.

Thank you for all your prayers as we went through our failed adoption two months ago. Thank you for the prayers that have brought this little one into our lives. We are so blessed!

be prepared...

For those of you who read my blog because you are considering the surgery, have a surgery date, or are simply curious about scoliosis surgery in general, here are some things that I wish I had been told before having the surgery. None of them are a big deal, but I really think that the better someone is prepared for any potential effects of the surgery (whether temporary or permanent) the easier it is to handle them.

Your surgeon is a busy guy (or gal). He does his best, I'm sure, to give you all the must need to know information in regards to the surgery. He warns you about the risks of death, infection, paralysis, and the fact that you will be in a lot of pain, for a long time. However, since he has never actually HAD the surgery, there is a lot of information that he doesn't probably see as important, or may not even be aware of since he's never had to deal with it first hand. There are a lot of things I think you should speak with your scoliosis surgeon about before you decide to have the surgery. Click here to view and print a list that I have made (with the help of input from many other scoliosis surgery alums) that has questions to ask your surgeon, before you decide to have the surgery, or when you have decided to do it, but are not sure what to ask.

Here are a few things, that may or may not happen to you. Again, these are NOT a big deal, and most of them are temporary. But I would have liked to have known about them because in those first few weeks and months of recovery, you are a little bit paranoid. Yes, it may be mostly due to the fact that you are a functioning drug addict. But, it is scary having your back split open and your spine drilled into. It's easy to let any little thing that is different or seemingly out of place, send your brain into a spiral of terror and doom. So let me ease your mind, at least a little, about some things that may happen immediately following your surgery, and throughout your first year of recovery...

1. If you are fused from T4 to L4, you will most likely need help when you go to the bathroom. It's embarrassing to say the least when I think about it now, but it is a fact that you have just had your spine fused and muscles cut through and so "reaching" is not one of your strong suits immediately following the surgery. Thankfully, there are "tongs" you can buy that help. If you are staying in the hospital by yourself, the nursing staff is trained to help you with this. I am embarrassed now when I think about it, but at the time you don't care at all...you are three sheets to the wind on narcs and pain, and this will NOT be something that concerns you. However, once you get home, it is helpful to have the ability to do this on your own, so buying the tongs before the surgery may be something you want to do. You may not need them (some people don't) but it'd be better to have them and not need them, than the reverse. Most likely, you won't need for them very long.

2. You may feel like someone punches you in the lungs every time you sit up for the first 2 weeks of recovery. No joke. Every time I sat up, I would experience an intense feeling of pressure in my chest, painful and swift as though some bully ran up to me and sucker punched me. I would not be able to breathe for a split second, and then would cough a few times, and then that feeling would go away. My surgeon explained (after I called asking about it because I was pretty sure I was dying) that can happen immediately following the surgery because they MOVED my lungs around during the surgery. It so happens that lungs don't really appreciate being "gently nudged" (as my surgeon described it). Thankfully, this sensation did not last very long, and by my third or fourth week post-op, it was gone.

3. You may have crooked shoulders in the first few months of recovery. "What??? I thought the whole point of this stupid surgery was to straighten me out!!" That's what I thought when I looked at myself in the mirror when I got home from the hospital. It was really pretty bizarre. Pre-op my right shoulder was rolled forward and was higher up than my left shoulder. This was one of the reasons I wanted the surgery, since that shoulder deformity was becoming more pronounced the worse my curves became. Right after the surgery, I could clearly see that my left shoulder was now higher than my right shoulder! I started to have a panic attack, thinking that I was now going to have to live with crooked shoulders for the rest of my life, even after going through such a hard surgery. But then I remembered something (and this is where having people who can tell you what it's like is invaluable) one of my friends who had the surgery a year before me had said: one of her shoulders following the surgery was much higher than the other one, and it happened to be the opposite of the way her's had been pre-op. She said that it had taken a little while, but after a month or two post-op, her shoulder had gone down, and they were no longer crooked. So I knew it was probably not permanent. Whew...crisis averted! I asked my surgeon about it at my next visit and he said it was because when they rotated my spine, all the muscles moved too. The ones that were pulled so tight pre-op in one direction, were now looser, and vice versa. Thankfully, my left shoulder did come down as my muscles continued to heal and relax the further into my recovery I got. So, if this happens to you...don't panic...it's most likely not permanent. Just give your body (and your mind) time to heal and adjust to your new shape!

4. At some point in your recovery, you may sound like rice krispies. I almost wrote a whole blog entry on it, but I felt it fit better on this list. At about 8 or 9 months post-op, I suddenly started to experience daily, extremely loud popping, cracking and crunching noises. It never hurt, and I never felt anything actually move in my spine, but it was loud enough for my husband to hear from across the room. It is something like the noise your knuckles make when you pop them, only loud enough that it could be that you threw a fire cracker into your back and lit the fuse. I asked around about it, and it is a pretty common thing for scoliosis surgery patients. You may have it happen every now and then, or you may have it happen a lot for a few weeks (like I did). Either way, it is not usually anything to be worried about. Here is a great article that explains it better than I can, and it gave me great peace of mind. I asked my surgeon about it too, (even though it had already stopped by the time of my next appointment) and he confirmed what that article says that “Other causes of joint noise is the snapping of tendons or scar tissue over a prominence, or something referred to as cavitation. Cavitation frequently occurs in synovial joints when a small vacuum forms in the synovial fluid and a rapid release produces a sharp popping or cracking sound.” I still occasionally pop or crack. But, unless there is pain associated with it, it isn't something to be concerned about.

5. You may break out like you're back in high school. I had so much acne I thought I was 13 again. It was worst on my forehead, chin and chest, but I got it on my shoulders and back as well. I think the places it was worst were from the surgery, where my face pressed against the operating table for 7 hours. But overall, it is from the raging crazy hormones that happen when your body undergoes a trauma of that magnitude. Your body is working overtime to heal, and it may affect your skin. Mine cleared up around 4 months post op.

6. You may struggle with depression, mood swings, and anxiety for the first few months post op. I did. It is not fun. I think there are several big reasons this happens.

  • You are on drugs. They all can cause depression. 
  • You are in the most pain you have probably ever been in in your life. That is depressing and scary, because you start to feel like you will never get better, and the pain will never decrease.
  • You are not sleeping well, if at all. I didn't sleep for more than four hours at a time for the first month post-op. I just couldn't sleep because of the amount of pain I was in. I could sleep for as long as the shortest amount of time a drug was supposed to last...if it was supposed to last between 4 and 6 hours, I would only be able to sleep 4. Sleep is vital to recovery, and vital to healthy emotions. 
  • You are stuck in the house, or hospital, or bed. I didn't start driving until 3 months post op, because that's how long it took me to get off the drugs. It is very isolating to not be able to participate in the fun things going on around you, or even drive to the grocery store.
Thankfully, as you ween off the drugs (or quit cold turkey as some of my forum friends did), as you heal and sleep more, the depression and anxiety will decrease. I felt like a whole new person when I stopped taking the heavy painkillers. I didn't realize how depressed I was until I was drug-free (the frequent crying in the shower should have been a tip off, but you just don't realize it's not normal when you're in that much pain, and getting so little sleep!) My advice is to let yourself feel bad. To cry when you feel like crying. Be honest with those around you, supporting you. Let them know you need extra attention, or that you don't want anyone around. Let them know you are scared, hurting, upset, lonely, confused and not sure you did the right thing. All of those things are okay! Just try to remember that what you're feeling is temporary, even though it feels like it will be like that for the rest of your life. Keep reminding yourself that IT WILL GET BETTER.

“I found cheerfulness to be like life itself- not to be created by any argument. Afterwards I learned that the best way to manage some kinds of pain filled thoughts is to dare them to do their worst; to let them lie and gnaw at your heart till they are tired and you find you still have a residue of life they cannot kill.” 
–George MacDonald, Phantastes

For more tips about the nitty gritty of what happens post-op as well as other ways to be prepared, click here And for some helpful info just for the ladies, click here!

If I remember other things, I will be sure to add them to this list...for now, just remember, that being prepared for this surgery is very helpful, but it does not ensure a complication free, painless, or easy recovery. It helps, but it does not make it easy...just easier to bear.

GERD news for people who love bad news...

Okay...so, if you've been reading my blog for a while, you will have read at least one post where I have chronicled my battle with worsened asthma symptoms since my surgery. (Take a Deep BreathPillow TalkTake a Deep Breath Part 2) Well, after months of asthma treatments and much frustration, and increasingly worse symptoms, my Asthma doctor finally figured out the main root cause of my problems. And I did NOT see it coming...

Yes, it is related to my surgery, (a combination of all 4 of my surgeries actually). No, it is not scary or life threatening, or thankfully, permanent! We had tried every kind of steroid, allergy test, and lifestyle change, and my symptoms were continually getting more and more out of control. It had gotten to the point where I was choking because my lungs were filling up with a mucus plugs, every day. My Asthma doctor decided to think outside the box. He asked me what I thought was a strange question: "Do you get heartburn?" I do not, and was wondering why he asked me that, and he went on to say that even if you don't get heart burn, you can still have something called Gastroesophageal Reflux Disease, or GERD.

There are many causes for GERD, such as eating really greasy foods, being very overweight, or even pregnancy. But since I don't have any of the common risk factors, not even occasional heartburn, it never occurred to me that I could have it. However, since GERD is basically acid coming up out of your stomach into your esophagus, and in my case, all the way up to my throat and aspirating into my lungs, my asthma slowly began to get out of control. When the acid aspirated into my lungs, it caused my preexisting asthma to become very, very bad.

My doctor figured out this is what happened:
LES: Lower Esophageal Sphincter
Every time I've had a surgery, I have spent a prolonged amount of time on my back, laying down for large parts of the day, sometimes for months at a time. This last surgery's recovery was so intense I would eat laying down, flat in my bed for around 2 months. This meant my LES (basically the "door" to your stomach) was relaxed while I was laying down, allowing the acid in my stomach to come right back up into my esophagus, irritating the lining. As I progressed in my recovery, I didn't lay down to eat anymore, but I did continue to lay down right after I ate meals, and did my physical therapy on a full stomach, which again, encouraged the acid to irritate my esophagus. Apparently, people with preexisting asthma tend to react to acid reflux with much worse asthma symptoms than anything else. And that was exactly what happened to me. I pretty much laid down flat as I possibly could for as much of the day and night as I could, for around 3 months. And that is when my Asthma symptoms suddenly started to pop up.

And guess what else can lead to GERD? Slowed down bowels...Oh yeah...remember when I had that due to the MASSIVE amount of pain killers I was on for months? And what else causes GERD? Steroid medications, like the ones I was taking for my terrible asthma symptoms...Really? The very thing we were trying to do to help my asthma was actually making it much, much worse? But of course!

So my Asthma doctor prescribed Prilosec (Omperazole) a medication that helps reduce the amount of acid produced by the stomach, which therefore lowers the amount that can creep back up into the esophagus and throat causing damage. He just wanted me to try it for a bit to see if it would help at all. I was honestly a bit skeptical that it would help, but decided to go ahead and try. After one week, my asthma symptoms were drastically reduced, and by three weeks they were gone. I've never had such a clear resolution of symptoms in my life!

With such night and day results, I decided to go see a Gastroenterologist to have an esophagogastroduodenoscopy, to confirm the diagnosis. Esophagogastroduodenoscopy is a fancy word for having a tube shoved down your throat to take a look at your esophageal lining (to check for damage), stomach, and the first part of your small intestine. They have a tiny camera that looks at everything, so they can check for any growths, ulcers, or inflammation. They did a biopsy to check for cancer, and made sure there was no hernia. I was sedated for the procedure, so I can't remember a thing, and it was painless.

Thankfully, I had no real damage and none of the more serious issues, though I did have irritation of my lower esophagus, which explained my symptoms. They believe my GERD resulted purely because of my lifestyle which resulted from my multiple surgeries, most specifically this last one.

So it's all tied together in one crazy, asthma and scoliosis bow. I am now steroid medication free, and my asthma symptoms are completely gone. I have to take the slow-release Prilosec once a day, and have a restricted diet for the next 3 to 6 months. The diet part is probably the hardest part, as I am only allowed to have small amounts of some of my favorite foods: chocolate, tomato, citrus, alcohol, and coffee, and none of them together. For example, I can have a small piece of chocolate cake, but not if I'm going to have tomato sauce on my pasta or a glass of wine. Though those are probably healthy eating habits to live by, I do miss eating a big ol' organic brownie! Thankfully, I will not have to be on the restricted diet very long, as my damage was so minimal. The Priolsec is helping heal the irritation, and by not laying down for 3-4 hours after eating (which can be hard at the end of the day when my back and leg are the most sore), I am no longer allowing the acid to come back up and keep the vicious cycle going.

It's amazing how many things can get complicated when you go through such a huge surgery. But, as I've said before, if this is my one complication, it's not that bad compared to the others that commonly happen with scoliosis surgery. I am VERY happy that it's not permanent, and that it's completely treatable. And now, I can finally breathe easy...