Looking on the positive side of the recovery process is this perk.
Temporary Handicap Permit
I've always been envious of those handicap parking spaces. Seriously! Especially when they are all empty and I have to park so far away. For the next 6 months I'll need/get to use the handicap spaces. Something about not being able to bend or twist will make it a bit difficult to get into the car, especially in those tight little spaces at Walmart. Also since it will be exhausting to walk it will be very helpful to be able to park close to the stores. Yesterday I had a nice conversation with a TSA Cares associate. I'm going to be flying home after surgery and needed to know what to expect at the security check point. She was so nice and was very emphatic that I needed to let them know what I was and was not able to do. I won't be able to go through the metal detector because you aren't allowed to go through in a wheelchair, walker or someone assisting you. My surgeon will not allow me to walk without assistance for at least the first week. I'll be too weak and my center of balance will be off. I also won't be able to do the body scan because I won't be able to stand unassisted and raise my hands above my head (after having all my back muscles cut through). So that leaves a pat-down. I'll be wearing my back brace so will probably request a private room so I can sit down and remove it if needed. I was told to tell them they cannot touch my back as it will be much too sensitive. If I can just skip the pat-down and have them do a test for explosives residue that would be even better. ;) One nice thing though is I will be allowed to bring my instant cold compress in my carry-on. The liquid rule doesn't apply to medically necessary products. I'll let you know how it goes.
Two weeks ago I went back to Seattle for my pre-surgery physical. Side story: My mom, who does NOT like to drive in Seattle or other large cities drove me there. The night before we stayed in a hotel about a mile from the clinic so she wouldn't have to drive in the crazy traffic. That evening we decided to go for a walk and see if we wanted to just walk to my appointment in the morning. We went about two blocks and decided we had seen enough of Seattle on foot. As much as we would like to not have to pay for parking we just didn't feel comfortable walking by ourselves. It's not exactly the cleanest city either. There was so much trash along the sidewalk it was quite disgusting. So we turned around and went back to the hotel and decided to just drive to my appointments in the morning.
Relaxing in the lobby after our "walk" in Seattle
First I stopped by the labs early in the morning for blood work and an EKG in hopes that the results would be ready for my next appointment. In the meantime we ventured out into Seattle again on foot. Surely there had to be a Starbucks nearby, right? We tried using the maps on our phones to follow the walking directions but were quite unsuccessful. How are we supposed to know which way is East? Finally the map figured out we couldn't follow those types of directions and started saying left and right instead. We saw some beautiful old buildings on our morning walk though. :) We finally asked the janitor at the clinic for directions. Basically we just had to walk through the other side of the clinic and there was the "shopping" part of town. We found a Starbucks in a grocery store and used my mom's gift card to order each of us a thick slice of banana bread and a strawberry smoothie. We headed back to the clinic to read and wait for my next appointment.
All the labs hadn't made it in when I went to my appointment with the internal medicine doctor. Pending any strange results that might come back in my lab work he cleared me for surgery. (The lab work did come in later that day and all is normal.)
Later that week was my 3 hour psych evaluation. I actually really enjoy this appointment. It didn't seem like 3 hours at all. We talked for 1 hour. He loved that I started a blog. I happily told him about my awesome support system; my family, friends and church members. I already have play dates set up for my two younger children after I come home. Truly amazing is how when I asked for help with meals for my family after surgery my calendar filled up in only 5 hours. I felt so awkward asking but was so grateful for the feeling of love and support! Thank you! Next, I completed an evaluation on the computer which took almost another hour. Then we discussed the results together for another hour. There were some very strange questions and some I just wasn't quite sure how to answer but mostly it was pretty simple. Do you fear spiders? Yes. Do you feel like killing someone? No. As we discussed the results it was pretty obvious that I am sane and have healthy coping skills to handle this surgery. However, as I am already aware, I am a bit introverted (although I'm working really hard to overcome this). His concern, which he made an notation of on my file, is making sure that I will speak up to get the help/pain relief/etc that I need. I've come a long way in making sure my needs are met since I had my first baby 16 years ago. Back then my IV came out of my vein and my arm began to swell as it filled with fluids. My husband looked at it and said I needed to call the nurse. I looked at it and said "It's okay. I don't want to bother them." I am determined to make my needs a priority...but I'll still be nice.
Happy Independence Day! It's crazy to me to think that in one month from today I will have just gotten out of a six+ hour surgery. I have great hopes for the surgery to go well. Lately whenever I do something I think to myself, next year I'll be able to do this without pain. Or this is my last time to do this without rods in my back. The good and the bad, I'll take it. The life ahead of me is filled with hopes for a better future filled with much less pain. My dreams are to be able to celebrate my own independence from debilitating back pain.
As much as I look forward with hope in the future there is anxiety in the today. There seems to be so much to do to prepare for surgery. So many appointments to set up and figure out what can I do here in Eastern Washington and what needs to be done in Seattle. My mom has been coming over nearly every day, for several hours, to help me de-clutter, give my house one last thorough cleaning and move my clothes and other things I'll need to mid level (since I won't be able to reach above shoulder level or bend over for until I heal). It has been a daunting task. We hang on to way too much "stuff". Beyond all the stress of preparing is the nervousness of thinking about surgery. They call it complex spine surgery for a reason. I've signed all the paperwork acknowledging that I could become paralyzed, blind, DIE... Eventually I'll need to fill out the paperwork for my Will and Power of Attorney. I can't figure out why it is such an emotionally draining task that I'm not quite ready to face. I guess acknowledging those things as a possibility is unpleasant.
I had my first nightmare (I assume there will be others) about surgery a few weeks ago. I dreamed I was in a line waiting for my surgery. They were just whipping out surgeries every 5 minutes and it was soon my turn. They took me by the hand and told me I was next. I just started to panic and kept saying, "I'm not ready! I'm not ready!" I woke up in a complete panic and feeling like I was going to throw up. Not fun.
Overall I am very calm and positive that all will go well but it is a huge surgery and a very long, painful recovery. I do worry about my recovery. I worry about all the medications I'll be taking and the effect they will have on my body. I just try to remember my calm reassurance that this is the right thing for me now.
One of the very great things about my clinic is they have a team approach for my case. The team includes neurosurgeons, anesthesiologists, internal medicine doctors, behavioral health, physician assistants and nurses. They met together last Friday and all agreed that I was a candidate for surgery. Yay me!
Another awesome thing is the spine class they have to educate you about pre-surgery, surgery & hospital stay, and recovery. There is so much information to know but they managed to pack it into a 2 1/2 hour class. It was awesome! I might add I've never met so many people with scoliosis. I met one person when I was about 25 and I didn't meet another for about 10 years. Then in the last six months I met 9 more including the 7 in my class. It's nice to know you're not the only one out there.
Anyhow, in my class I learned of all the pre-op "to-do's" like: labs, EKG, physical exam with Internal Medicine, psychological evaluation, and a blood draw. So, I have to make 2 more trips to Seattle before surgery; one 30 days before and another 2 weeks before.
My surgery will be from the back. (Posterior approach) This approach to scoliosis surgery is done through a long incision on the back of the spine (incision will go pretty much the entire length of my spine to be fused from T3-L3 ) After making the incision, the muscles are then stripped up off the spine and nerves severed to allow the surgeon access to the bony elements in the spine. The spine is then instrumented (screws are inserted) and the rods are used to reduce the amount of the curvature. Bone is then added (either my own bone if they have to remove some in stiff areas or cadaver bone), which in turn creates a reaction that results in the spine fusing together. The fusion process usually takes about 3-6 months and can continue for up to 12 months.For those interested in what exactly the surgery entails here's a short animation.
It looks so easy and gentle on the animation but I've watched a clip from an actual surgery and it is anything but gentle. This is a link to a video of a Spinal Fusion Surgery. FYI: It is kind of gross. It won't play with the safety mode turned on YouTube.
On the day after surgery, if all goes well, I'll probably move out of the Critical Care Unit and into a regular room Bonus: spinal fusion patients have priority for private rooms. I don't want to be miserable and have to share a room. Plus private rooms have a couch or chair for family to stay with you. Physical therapists will come and work with me during my time in the hospital. I'll be up and walking the day after surgery. We'll also focus on stairs since my bedroom is upstairs at home. I'll have a social worker that will coordinate my care, such as finding out what my home situation is so I can focus on skills I'll need at home (like stairs).
My surgeon said the majority of his patients come home in only 5 days. Yikes! I don't know that I'll be ready to travel after only 5 days! Of course it is required that a caregiver is with me for 24 hours the first 7 days at least. I'll have Joe there to monitor all my medications, and incision site, running errands, refilling medications, and transportation. He will also be encouraging me to eat as I'll be on a 3,000-3,500 calorie diet! I generally like eat so I hope I have a good appetite. I'll need help with most things for at least 6 weeks as I won't be allowed to drive, bend, twist, or lift. Full recovery can be 6 months to a year.
At my class I was measured for my TLSO (back brace). I'm not looking forward to wearing it for the 6 months following surgery but figure at least it will prevent me from breaking my hardware and doing something I shouldn't. Here's of picture of just how lovely it will be. ;-)
I met with my surgeon after the spine class. He reviewed my bending x-rays I had done after my last appointment. The lumbar area of my spine is very flexible and he feels he'll have a good amount of correction. However, my thoracic region is stiff and he may only be able to get 50% correction (so down to about 30 degrees). I'm hoping he's just under promising and and will over deliver. Just to be sure I have started do a bunch of stretches and exercises to hopefully loosen up that area. These three are my favorite ones that I've found. I can feel the stretch without causing me pain.
