Tuesday, October 30, 2012

Almost 5 Months Post-Op

Woohoo! I saw my surgeon today and had my restrictions lifted! I can now bend, twist, squat, and resume my Olympic powerlifting career! Well, maybe not the last one. Scoliosis or not, I was never going to be an Olympic powerlifter. But, I can lift up to 20 lbs., which is 15 pounds more than I used to be able to lift! I know 20 pounds doesn't seem that exciting, but remember, I haven't lifted anything over 5 pounds in almost 5 months. I can now lift a bag of groceries, pick up my dog (no, not the 75 pound one), give little person a piggyback ride... And, I get to start physical therapy - 2 times a week for five weeks and possibly more. Laying around for five months has taken a toll on my body - my cardiovascular fitness needs some work, and ooh those atrophied back muscles. Maybe I'll take a picture and show y'all someday. It's been a rough journey, and will continue to be, but soooooo worth it because I have the rest of my life ahead of me and I'll be spending it in a LOT less pain.

In other news, I got a new car - a 2013 Chevy Equinox LTZ in tungsten metallic. I wanted a Batmobile, but they didn't have one in stock in the color I wanted. I still love my new Equinox. It has a power lift gate and a backup camera. The camera has been great since I don't have the same range of motion and can't twist as far. You'd be amazed at how many people meander behind a an SUV backing out of a handicapped spot.

Tuesday, October 23, 2012

Silly Me

Tomorrow is going to be fun. I just refilled my Singulair, which went recently went generic. For this reason, I didn't think much of the round pill I just swallowed, even though it used to be square. When I went to put the cap back on the bottle, I realized that what I had just taken was actually a sleeping pill. Hey, the generic versions of both pills start with "m." The kicker is that I NEVER take more than 1/4 of the sleeping pill because it makes me soooo tired the next day. What's even funnier is that I took an entire one of these round pills on Sunday night also. I've been unusually tired over the last couple days, but I thought it was purely because I haven't been sleeping well. You'd think that I'd be sleeping really well!

Wednesday, August 29, 2012

13 Weeks Post-Op

I saw my doctor yesterday and the good news is that everything looks good. I'm healing well and all of my hardware is still in place. Believe it or not, the rods, hooks, and screws can actually be dislodged or even broken. My doctor explained that the small hooks attached to the top portion of my fusion sometimes loosen with too much activity in the early post-op period. At this point in my recovery, that would be very detrimental since my spine hasn't yet fused. No hula-hooping or slip-n-sliding this summer... The nerve damage in my right thigh has also improved, but I still require medication to control the shooting pains and tingling.

The bad news is that none of my restrictions have been lifted. I've been sentenced to another 2 months of lifting no more than 5 lbs., no bending, no twisting, and no squatting. This also means that my mom has been sentenced to 2 more months of maid duty. I am allowed to lunge and kneel, but that's inconvenient and very uncomfortable. Basically anything lower than 3 feet means I have to get down on my knees. And if I'm hungry and want to check out what's in the refrigerator I can only see what is on the lower shelves, but I can't reach any of it. Maybe I should get myself a periscope... Another difficult task is grocery shopping. Since I can't lift more than 5 lbs., I can't load or unload groceries that weigh more than 5 lbs. I was thinking that I could get my Labrador a backpack so that she could go grocery shopping with me and do the heavy lifting for me! My limitations are annoying, but a small price to pay for feeling so much better. I'll follow doctor's orders for as long as necessary because I'm not going to screw this up! In November I get to start physical therapy and I'm really looking forward to it.

In other news, I head back to work next week. I've become restless and am eager to return, but I'm not sure I'll have the stamina to remain upright for ~10 hours a day for 5 days in a row. After about an hour of being upright, my shoulder and back muscles begin to burn and I need to lie down to let my muscles rest. It's probably going to be difficult, but I'm confident I'll figure out a way to manage. I'm lucky I have supportive friends, family, and co-workers!

Tuesday, August 7, 2012

9 Weeks Post-Op

I'm 9 weeks post-op and I've made so much progress. That being said, I'm still slow and dependent on help from others. When I first arrived home, I needed help doing absolutely everything - dressing myself, washing myself, brushing and fixing my hair, reaching things, getting food, etc. I'm now able to to do many of these things on my own with a few modifications. I've even learned to dress myself either by using 2 of my long-handled grabbers or by sitting down. I can now put shirts on over my head, instead of having to only wear things that I can step into (week 5 milestone). One of the things I still can't do (and won't be able to do for quite a while) is bend, so I have a difficult time reaching things below waist level. While I have become quite good at picking things up with my toes, there are some situations where toes are inappropriate or just won't work. Typically, this is where my grabbers come in handy, but I've learned that my grabber can actually get me into trouble. While trying to pick up a soda can with one of my grabbers (yes, I have 3) I somehow managed to puncture one of the cans. It began spraying me and my kitchen, and while I was able to rotate the can away from me, there was little else I could do other than yell for help. Luckily, my Mom found the situation amusing and cleaned it up for me, but only after making fun of me. I've learned that even though I can do things on my own, it's often easier and more efficient to just ask for help.

I've gotten much more confident in my movement and feel comfortable moving around the house, though I won't be winning any races anytime soon. Somewhere around week 6, the feeling that I was going to break with any movement began to dissipate. My back is still very sore, but it's a good kind pain because it's a healing pain. The not-so-good part is that I also have nerve damage in my right thigh that is likely the result of lying face-down for 7.5 hours. My doctor said that this isn't that uncommon and that I should gradually regain all feeling. I really hope this improves because it's enough to keep me awake at night. Even still, it's a small price to pay.

I'm unable to be upright for long periods of time because my back gets very tired and my muscles start to burn. So, I am still spending a lot of time horizontal. I've learned to do a lot on my own, but it will still be quite a while before I'm completely independent. I already feel so much better than I did before surgery, so I think the worst is over. I couldn't be happier with the decision to have surgery (though I'm not sure I really had much of a choice) or the surgeon I chose. I'm so lucky to have my friends and family, because there is no way I could have done this without their help. The support I've gotten from everyone has really helped me through this.

Wednesday, June 20, 2012

My Itchy Back

My back was itching really badly last night, so I got out of bed to go put some vitamin E oil on it. Since I can't twist, I had to arrange my bathroom mirrors so that I could see my back hands-free. My bandages were just removed today and all that remains are the Steri-Strips, so this was the first really good look I've gotten of my back. What I saw was so different from how my back used to look. I didn't see the deformed landscape of unevenly protruding shoulder blades with sagging skin on one side of my back. Instead, I saw a mostly smooth surface with shoulder blades that protruded almost evenly on both sides. I can't remember the last time my back looked this way. It's amazing to think that the handiwork of a highly-skilled surgeon is capable of transforming my back into this. For so many years I never thought much about how my back looked, I just wished for it not to hurt. Once I'm done healing, I may not only be pain free, but I will also have a fairly normal looking back. I'm so grateful and I feel so lucky. I owe Dr. James Hardacker at The Spine Institute a REALLY big thank you!

Thursday, June 14, 2012

Home at Last

I've been at home now for a full 3 days. I'm so happy to be surrounded by my dogs and my things in my home. I was nervofora out the car ride home from the hospital because the reports I'd read described the ride as quite painful. I had prepared ahead of time by requesting that my Dad go easy on the gas and brakes. I had also asked my parents to bring lots of pillows so that I could pad myself. And as for my house, I was fully prepared. I had read books, and blogs, and spoken to friends who'd had the surgery. I was sure I was fully prepared for just about anything.

I was so excited as the nurse wheeled me downstairs to the car waiting for me at the front entrance of the hospital. I used the skills I'd learned in physical therapy and managed to get into the car without twisting my torso. Once in the car, I put one pillow behind me, one in front of me, and one on each side so that I felt like a safely packed bottle of expensive wine (this was an expensive surgery!). My Dad was easy on the gas and brake pedals, and very gentle on the turns. I could feel the un-fused portion of my spine absorbing each and every bump in the road. As we pulled into a parking spot on the street in front of my house, I was relieved because I thought the most difficult part was over. I opened the door and my Dad helped me out of the car and onto the sidewalk. As I stepped onto the street to cross to my house, I realized that the road was rough, bumpy, and uneven, much unlike the flat, smooth floors of the hospital. With a little extra caution, I made it across the street and up my uneven, broken steps, and into my house. I was so glad to finally be home. I walked over to the couch and awkwardly managed to sit down. Getting up was a little more difficult. Next up, my bed. I stepped up onto the stool beside my very tall bed, slowly laid onto my side, and then gently rolled onto my back just as I'd learned in physical therapy. My memory foam mattress felt like concrete, and it felt as though the titanium rods in my back were pressing against my mattress. It hurt and I wanted up, but I quickly realized that there wasn't a handle on the side of my bed like there had been on my hospital bed. My Dad managed to wedge my walker between my dresser and my bed so that I could use the handle of it to roll myself back onto my side and push myself into a sitting position. I began to panic a little because there wasn't a single place in my house where I could sit or sleep comfortably. The hospital isn't like a hotel. I couldn't just go back and ask to check-in for another 5 nights. My Dad suggested that I try the couch because he thought it was much softer. I tried it, but it wasn't any better. Luckily, I'd read about others who'd had this same issue, so I knew what to try. A quick trip to Wal-Mart and 2 mattress toppers later, my bed was more comfortable than the hospital bed. I've now slept comfortably in my own bed for the last 3 nights. The amazing part is that the quality and duration of my sleep is better than it was before I had surgery, even with having to wake multiple times throughout the night to take medication. My Mom has taken on the night shift, ensuring that I receive all of my medication on time. She's not only complied, but seemimgly embraced my crazy system for recording and monitoring every pill that goes into my body. This has been such a huge relief for me because the simplest things like getting in and out of bed are so complicated. I don't know how I'd do this without the help of my parents.

Saturday, June 9, 2012

Post-Op Day 5 - Still in the Hospital

I had a rough start to the day today. Coming into this, I knew that my stay in the hospital would last until Thursday if everything went perfectly. I was aware that if I required blood then my stay would extend until Friday. Friday arrived and although my doctor and I had found a good combination of oral and intravenous medications to control my pain, I couldn't take the I.V. drugs home with me. I tried to replace my I.V. pain med with an oral pain med, but I awoke in excrutiating pain at about 3 am this morning. I began taking the I.V. medications again and my pain level eventually returned to tolerable levels. We're having a difficult time finding the right combination of oral medications to control my pain. I just spoke to the doctor and he has a few other oral pain meds for me to try. The one other issue I'm having is that my wound keeps coming apart at the very top, so today my doctor used a combination of glue and tape (no, not the kind offered in your local office supply store) to try to seal the wound shut. If the wound stays shut and the pain pain meds work for me, then hopefully I'll be able to go home tomorrow (Sunday).

When it comes to medications, I typically don't experience any strange or euphoric side effects. Either the medication does its job just as intended, nothing more or nothing less, or, it doesn't work AT ALL. For example, Morphine does nothing for me. Absolutely nothing. I've also discovered that Oxycodone doesn't do anything for me. However, it appears that Dilaudid makes me talk in my sleep. I think I realized this before anyone else, because I woke up several times, while in the middle of answering a question that no one had actually asked. My Mom caught on to this little side effect just yesterday when I awoke in the middle of throwing my arms into the air while counting down , "3-2-1!" Since then, she's caught me a few more times.

Friday, June 8, 2012

4 Days Post-Op

I can't believe surgery is over with and everything went better than I expected. I was in surgery for about 7.5 hours and recovery for another 4.5 hours. I now have 2 rods, 7 screws, and around 13-14 hooks holding my spine in place. My surgeon indicated that hooks had to be used on most of my vertebrae, because the vertebrae were too small to insert a screw into. I haven't gotten to see the post-operative x-rays yet and I can't wait. I'll probably get to see them at my appointment on June 14. My surgeon was able to reduce both my 40 degree upper curve and my 53 degree lower curve to approximately 15 degrees each. The outcome was better than I had dared to dream. My surgeon said that once I was opened up and he was able to see everything, he could easily understand why I was in so much pain and was having migraines. Several of my vertebrae were making contact and rubbing against each other nearly every time I moved.

I did end up needing some extra blood, so on early Tuesday morning I received the 2 units that I had donated prior to surgery. I know that donor blocod is screened very carefully and is very safe, however it was nice to have one less thing to worry about. It was also a relief to know that should I need blood, there was a special supply available just for me. Because I needed the extra blood, the earliest I could be released from the hospital is today. I don't see how that's possible considering the way I feel. To stay another day or two wouldn't bother me at all. I think going home will be a very difficult transition since my house isn't as conducive to someone in my condition.

To everyone that has been reading about me, thinking of me, praying for me, sent me gifts/ flowers or cards, thank you so much! It means a lot to know that there are so many people out there that care about me and are thinking of me.

Monday, June 4, 2012

Jill is in Surgery

Today is the day for Jill's surgery. We arrived at St. Vincent Carmel Hospital at 6:00 AM and she was immediately prepared for surgery. After reviewing the procedures and possible negative outcomes Jill was extremely calm and ready, but mom and dad were having difficulties seeing their daughter taken to surgery at 7:20. The surgery is scheduled to take 6 to 8 hours.

Sunday, June 3, 2012

Countdown to Surgery

Tomorrow is the big day and hopefully the beginning of the end of 13 years of pain and searching for a solution. I don't feel prepared, but I doubt anyone ever does feel prepared for something like this. I'm not sure how long I'll be out of commission or to what extent, so I've tried to prepare for the next 3 months of my life. If only I could enlist McGyver to help me, then I'd be prepared for anything. This past week I've been busy visiting doctors to fit in those appointments that I normally would've had over the next three months. I also got my car fixed, rearranged my house so that important items are at chest height, wrote checks for upcoming bills, and cleaned. Today I finished up a few last minute tasks such as filling prescriptions and buying items to accommodate me once I return home (think raised toilet seat, step stool, walker, shower seat, grabbers, etc.). Most importantly, I got a pedicure with a close friend and my Mom. Not only was it great to spend time with my friend and my Mom, but also because I don't know when I'll be able to reach my feet next!

I'm very nervous about surgery tomorrow, but I know I'm in good hands. I'm expecting to be in surgery for 6-7 hours. During that time, my surgeon will make an incision on my back in the area of my thoracic spine (upper and mid-back). A combination of 35 mm screws and hooks will be attached from T2 to T11 (there are 12 thoracic vertebrae). Two 1/4-inch titanium rods will then be attached to the hooks and screws on each side of my spine. The attached rods will allow my surgeon to straighten and de-rotate my spine. Bone from my pelvis may be taken to use as bone graft to help fuse my vertebrae together. Over the past month, I donated 2 units of blood just in case I lose too much blood during surgery. My quick description of the surgery may sound simple, though it is anything but.  Below are a couple x-rays showing what my spine looks like now, before surgery.  My personal assistant (aka Mom), my chauffeur (aka Dad), or I will post the after x-rays as soon as possible after surgery.  Hopefully there will be a dramatic difference!  Now, just 8.5 hours before surgery. . .

Upper 40 degree curve

 Lower 53 degree curve

Monday, May 28, 2012

Who, What, When, Where, and Why

A little about me and why I'm writing this blog... My name is Jill and I'm 32 years old. I'm writing this blog to document my journey through spinal fusion surgery and recovery. I'm the kind of person that likes options, so in this first post, I'm going to provide you with 2 options - the short story and the long story.

The short story: In the 5th grade I was diagnosed with scoliosis. At 19 I began having back pain. Over the years, it got worse, then it got worse, then it worsened, then I had more pain, and then it got even worse. I tried everything including standing on my head and spinning in circles, while thinking happy thoughts about majestic unicorns and fluffy kittens sprinkled with glitter. Despite my efforts, the pain still got worse and my curvature progressed. Now I'm 32 and I'm having surgery. If you've opted to read only the short story, then you can stop reading here, disembark the pain train and start looking forward to my next post. If you've opted to continue reading, then make yourself comfy and keep reading.

The long story: I was first diagnosed with scoliosis in the 5th grade during an annual checkup with my pediatrician. X-rays showed that I had a double major thoracic curve in the shape of an "S" and I was referred to a specialist at Riley Hospital for Children in Indianapolis. At the time, my curve wasn't severe enough to warrant surgery. Because of the location and type of curve, my doctor said that bracing probably wouldn't do much good in reducing the curve or halting its progression. He said that the psychological effects far outweighed the possible benefits since the type of brace I would've required would have extended from my hips to my chin. It was decided that observation was the best treatment option for me, so I continued to visit my doctor at Riley annually. When I was a freshman in high school, my doctor told me that I no longer needed to continue my visits to Riley because I was nearly done growing and my curve would not progress once I was done growing. At that time my upper curve was approximately 37 degrees and my lower curve approximately 42 degrees.

At age 19, I began experiencing occasional mild to moderate back pain and chronic migraines, so I made an appointment with my doctor who took x-rays and referred me to an orthopedic surgeon in Evansville, IN. The surgeon told me that my curve hadn't changed much and that I wasn't a candidate for surgery. I was also told that my scoliosis wouldn't cause back pain. I was told to take OTC pain relievers for the pain and migraines. I followed the doctor's recommendations, though they didn't help much. As the years passed, my pain progressed in severity and frequency.

At age 26, I started working at a job where I was sat for 8 hours a day and there was a noticeable increase in my pain. After learning a little about ergonomics, I made some adjustments to my workstation and took a bigger dose of "toughing it out." I began getting massages every 2 weeks, which helped dramatically with the frequency of my migraines. The massages also helped to decrease my pain by helping my overworked muscles to relax. My massage therapist explained that my back muscles were extremely tight because they were trying to compensate for my crooked spine, and that this was likely causing a lot of my pain.

By age 29 I was in enough pain that I realized I had to do something because it was only going to get worse as I got older. After speaking with my general practitioner, she prescribed a wonderful drug called Imitrex for my migraines, and recommended a chiropractor and acupuncturist. She also referred me to an orthopedic surgeon in Fishers, IN, who took new x-rays and sent me for an MRI. The orthopedic surgeon measured my upper curve at 35 degrees and my lower curve at 43 degrees. He told me that I wasn't a candidate for surgery because my curve wasn't severe enough and he referred me to a physical therapist. While physical therapy, chiropractic adjustments, and acupuncture helped with my pain, the relief was only temporary and typically only lasted 2-3 days. I also continued to get regular massages. During this time, I began to average 3-6 appointments (massage, doctors, and PT)per week. The appointments in addition to work and life's other responsibilities were exhausting and I was left with little free time for fun and relaxation.

By age 30 my pain had gotten worse, despite all of my time, effort, and money spent on PT, adjustments, acupuncture, and massages. I was in pain all of the time and was enduring migraines that lasted 3-5 days each week (even with the help of Imitrex). Once again, I spoke to my general practioner during my annual visit to see what my options were. She recommended that I see a pain management specialist. So, I took her advice and began treatment at a pain management group where I added 5 new doctors/ healthcare practitioners to my already full list. During my first visit, x-rays were taken and my lower curve was measured at 50 degrees.

I'm now 32. In January, I found out that my that my upper curve had increased to 40 degrees and my lower curve had increased to 53 degrees. I also discovered that sometime over the past 3 years, I shrunk 1 inch. I've visited 3 orthopedic surgeons who specialize in scoliosis, from Indianapolis all the way to New York. All 3 recommended surgery because they said my curve would probably continue to progress. I was also told that surgery may (cautious doctor speak in which the doctor hints, but avoids making ANY promises) decrease my pain. I've concluded that I've exhausted all other options and surgery is all that is left. After much research and many long talks with friends and family, I've decided to have surgery. Life should be more than spending all of my time in doctor's offices or lying on the couch with ice packs on half my body. The big day is now 7 days away.