Even More Milestones

Things have been a little busy lately so once again I have fallen down on my blogging duties. I've been back at work for almost a month now and it's been great to get back in the swing of things. I'm starting back to full days this week which is exciting, even if it's only one day since Thursday is Thanksgiving. I was also released last week from PT!!! My physical therapist, Leslie, was surprised with how quickly I progressed over the course of our work. I'm still having to work on exercises at home, but overall I'm doing a lot better. Being able to move my neck around more is very helpful when driving, especially with the winter weather we have been having. I'm definitely cautious right now with driving and in general walking around on the ice we've had over the past few days. I don't want to compromise any work I have done so far by having a fall damage my back or neck right now.

Yesterday was also a milestone, having my first follow up MRI after surgery. The doctor ordered a MRI of both my cervical and thoracic spine, to make sure no tumors are appearing anywhere else and that Oscar has not tried to show back up. Dr. Smith has been pretty optimistic that we will not see any regrowth and ependymomas are usually not the type to show up somewhere else in the spine.

After meeting with Dr. Smith, he gave me the all clear for my MRI; no tumors, no regrowth and no other problems showing up post surgery!!!! Aside from mixed-martial arts, race car driving, or any other activities that violently move my head/neck I am good to go! He was very pleased with the strength, sensation, and motor tests that they conducted. I will go back again in 6 months and again at a year for follow-up MRI's to ensure there is no regrowth. They will also be monitoring my neck to make sure I'm not having any problems with stability in my neck after the laminectomy. It's possible I could need to have my C5-T2 vertebrae fused together, but he is hopefully that it is a small possibility.

It's still crazy to think it has been nearly 2 months since my surgery. Everything happened so fast and that has continued with my recovery. Still can't do a few things and I have a couple little quirks with numbness/strength issues, but they continue to get better. I may always have some quirks from the surgery and of course my scar, but that can just lead to a crazy story about that time I had spinal cord surgery! :-)
I'll keep updating on here as more milestones happen and to check in with how things are going. I've still got some recovery to go, but I'm well on the way there.

Hope everyone has a Happy Thanksgiving!!

It's Back to Work I Go

Seriously, I'm really bad at updating. Sorry again for the delay, but I've got some great stuff to share. So the last time I posted, I talked about the benefits of rest. Since that post I have gotten my sutures out (woohoo), working on resting and taking part in physical therapy twice a week. I'm into my second week of therapy and the improvement has been great. Most of the therapy is to help me have a more relaxed posture (I was described by my dad and surgeon as a etiquette schoolgirl since I was walking so tall and straight) and natural movement. We are also working on being able to reach above my head better and of course neck rotation. I have lots of fun exercises to work on at home to keep the improvement rolling. My movements definitely have been getting better and it's nice to be able to turn my head more without having to move my whole body. I've improved from Michael Keaton Batman to Christian Bale Batman (we'll just skip Val & George versions). Both my physical therapist (wonderful woman, if you need PT Spectra in Lubbock is a great place) and my surgeon have been happy with my improvement and agree I'm ahead of schedule with recuperation from the surgery I had. Some comes from my age and otherwise good health, but all the praise goes to God for his blessings during this time.

So onto the awesome news...I know you are waiting with such crazy anticipation. I started driving again!! I began with just a few short, supervised drives at first in areas without a lot of traffic (especially the crazy Lubbock traffic - never know when someone might backup in the middle of an intersection). Driving can still be a little bit of a challenge since there are still some problems with rotating my neck and shoulders around, but for the most part it's been fine. I also, as of yesterday, started back to work for half days!!! Yesterday was great; it was nice to be back in at least part of the routine again and see everyone at work. Sitting at home and not doing much can only last so long before I go crazy. I'm working on not pushing myself further than I can handle. I definitely don't want to have another setback. Today should be a good test for my endurance since I work half a day and then have a PT session this afternoon.

A lot of things going on in the next few weeks (all leading up to Thanksgiving!!). I'll have my first post-surgery MRI to see how everything is looking and checking to see no re-growth has occurred. I'll be doing a few of these over the next year to ensure that Oscar doesn't try to make another appearance; Dr. Smith said the chances are low, but always good to check. I'll also be finishing up physical therapy and going back to full-time at work. I'll do my best to keep you guys updated as things go along.

The Benefits of Rest

Sorry for the delay in posting everyone. The past week escaped me between some bad days and then recouping. I learned an important lesson about life after major surgery, but unfortunately I had to learn it the hard way.

In the hospital I was cruising along just fine. Walking up and down the halls, sitting up in my chair during most of the day, passing expectations of my surgeon and PT/OT therapists, and chatting it up with my family and visitors. I was able to get released from the hospital just 4 days after surgery, a whole day sooner than my doctor had predicted. It was originally thought I would be there 5-10 days with the possibility of having to go to a rehab facility for a few days after that. I was doing great and feeling pretty great too.

Then I got home on Sunday and continued with walking around and eating some tasty non-hospital food! But unfortunately, the one important thing I didn't do much of was rest. Because I didn't rest during the day, and was having trouble getting back into a regular sleep schedule at night, I ended up having a few really bad days where I was exhausted and having more issues with movement and numbness on my left and right side. It definitely wasn't a fun time and I was stressing myself out with the high expectations I had set for myself after my time in the hospital.

After some rest and advice/feedback from my family and surgeon, who I went to check-in with, I came to realize that I was just a week past a seriously major surgery. I had my spinal cord cut into so the surgeons could remove a tumor that had grown. Both the tumor or the surgery could have left me as a quadrapeligic or with some very serious motor function loss. Instead I am able to walk and do most everything as normal, aside from bend, twist or lift heavy items for a short period of time. I have a few issues with my left side and a slight burning sensation on the side of my right hand. These have started getting better and can continue getting better for up to 6 months as my spinal cord and nerves heal up. I may have a few little quirks left, but I have been blessed to not have that many issues so far. So rule #1 of life after major surgery, REST!!! (seriously, rest up!)

I'm sorry for the radio silence during this time, I still can't believe it's getting close to 2 weeks post-surgery. The past week went by before I knew what happened and I have been bad about reaching out and letting people know how I am doing.

I'm doing better each day as I get more rest. I get my sutures out tomorrow (So Happy, they are itching like crazy!) and I start physical therapy later this week to work on my motor skills and the ability to move my back and neck better (I won't be Michael Keaton anymore!!!). I'll be working up to being able to drive again, which will be exciting for me. I'm a get up and go type of person, so having to sit around more is definitely a bit of a drag. However I am getting time to work on my drumming skills :-); helps me to see how my left hand is progressing and work on building up my coordination. I'll also work on updating this blog more so you guys can keep up with my progress. I'll do my best not to go quiet again for so long.

See ya soon!

Oscar has kicked the bucket!

Well Oscar left the building a few of days ago and I'm a little more coherent for a blog post to you guys.

First and foremost, surgery was a complete success! Surgery took about 4 and a half hours and according to Dr. Smith, my neurosurgeon, Oscar just popped on out (guess he was tired of me). I may be a little smarter now too, because apparently my cerebral function went up during surgery! :-D Also among all the praises, the tumor was completely benign!

After getting my much appreciated pain meds after surgery I provided some entertainment for family. I had a few more awake moments where a few Deidra Approved photos taken.

Did have a bit of a rough night in ICU not getting much sleep and in some pain. But since only one other pain episode after my first time getting up and around, the spinal headache is no joke, things have been amazing. Moved to a regular room Thursday afternooon and immediately did evals with Physical and Occupational Therapies. Walked almost the full hallway and back for PT, plus all good arm and leg exercises. Lisa, my occupational therapist, said I could have taught a class for her based on my eval. Not trying to be boastful, just gotta praise God for all the blessings that he has shown me during this whole situation!! Thanks to Jodie and Brian for their visits!

After some great rest, I spent most of Friday out of bed, either in my big chair or up and walking around. Nearly kicked the Kara, one of physical therapists, in the head during leg exercises :-D. Did the whole hallway for PT and got my home moves down for when I get to leave. I've been walking around the halls with only slight supervision since then as well. I keep offering to race, but no takers so far. 

Dr. Smith and his DNP Chad have both stopped by and think I may get to go home on Sunday!! Praises!! I've been doing really well for such a big surgery and barring any last minute problems, which they havent seen, I should be good to go. I will still need some help for a bit, not being able to move your head is a bit annoying. Right now I have to keep my back straight to, avoid bending, lifting, hunching, and not jar it around while everything heals. Aside from that I can move how ever much I would like. So basically just think of me as Batman (Michael Keaton version) when he had no moveable neck suit. :-D

Had some more wonderful visitors yesterday, including awesome Denver Driskill and his parents, Matt & Genene! Nothing like a big fluffy guy like Denver to get you feeling happy! Thanks also to Debbie M. and Jeff & Rachel for coming by!!

Appreciate all the prayers, love, support, flowers, and goodies everyone has been sending!! Words can never express how thankful I am to everyone! Thanks to Lonnie Hamil for coming by and praying before and after surgery with me, mom and dad!

The timing for all of this was very fast, going from just some pain to being told I need surgery or could be a quadriplegic in 2 months is definitely not easy. I still have some tingling and numbness on my left side, which the doctor predicted, but I'm only 3 days post op, so that can still dissipate with time. Even if I keep some of this, it's the much better alternative to lacking arm or leg use or problems just getting around. So Praise to God for His many blessings! I'll keep you guys posted about my coming days and when I'll be back home.

Suns Up, Guns Up!

Oscar??

So what is the meaning of this oddly titled blog you ask? Well, the jist of it is this - I was recently diagnosed with a spinal ependymoma and decided to use this as a way to keep account of my journey through this crazy time and to help update my family and friends of my progress. I've also found that there are not many recent personal accounts from those who have had spinal ependymomas. The majority of what you will find with your basic search is tons of long and not always deciferable articles on clinical studies. Most of the studies are outdated or have very small sample sizes, mostly due to the rarity of this disease, so they don't provide much helpful information. That's the short of it, so if you would like to know more about this new aspect to my life feel free to follow along. You will notice that I do like to try adding humor in (hopefully it is funny and there aren't crickets off in the background somewhere), I don't mean any offense just trying to lighten the mood and not let this take over my life.

This all began when I started experiencing a pain in between my shoulder blades occasionally, especially after waking up in the morning. Didn't think much of it at first, but then started getting jolts at the spot and tingles down both of my arms. The tingles then started becoming more of an ache down my arms, especially my left side, that stick around sometimes for a few hours. Tried to work on sitting up straighter at my desk at work and sleeping with different pillows but nothing was helping. As the pain progressed to being at other times besides just the morning I decided to go see my doctor. My doctor wasn't sure exactly what could be causing this, I'm only 29 and most back injuries at least for people around my age are due to some type of injury. She ordered a chest x-ray, which came back clear, so from there we progressed to an MRI.

Went to the MRI appointment and got to experience that fun for the first time. I wouldn't consider myself claustrophobic, but I was definitely getting a little antsy when they pulled me out and said they needed to inject me with dye for another few minutes of testing. After I was finished they told me I needed to speak with my doctor, which I assumed wasn't a good thing. However at that moment my brain popped up the image of Arnold Schwarzenegger in "Kindergarten Cop" screaming "It's Not a Tumor!" (which a friend texted me before I went back to the doctor).
My doctor sent me to a neurosurgeon after letting me know that something showed up on my spinal cord and most likely we were looking at something needing surgical treatment. (So much for Arnold's advice)

So off to the neurosurgeon I went and after doing some tests of my reflexes and limb strength, which were fine and not giving off the sign something was wrong, the doctor gave me his diagnosis: spinal ependymoma. This is a tumor that grows from the ependymal cells which line the walls and ventricles of the Central Nervous System. Like most tumors, these cells were just fine until some unknown incident caused them to start growing rapidly and form a tumor. Mine runs from the C4 to T2 vertabrae and basically looks like a hot dog (Oscar, get it?). The tumor is rare, but my neurosurgeon was able to give me stories of some patients that he has treated for the same issue who lead completely normal lives now. The main treatment for this tumor is to remove it as completely as possible. Easy enough, right?

What type of fun surgery does this removal entail? Pretty much a scary and crazy description by the neurosurgeon, who makes it sound easy (where's Derek Shepherd when you need him?). I wouldn't suggest searching the videos in YouTube for spinal ependymoma because you will be inundated by something out of an Eli Roth movie. Made that mistake once trying to find doctors discussing it and won't make it again. So for the faint of heart, no worries I don't plan on releasing any videos or going in depth with what will take place. If you really want to know Google it or message me and I can give you a quick overview of the details. I've heard great things about my surgeon and he feels confident the risks of surgery can be kept to a minimum. 

So now we know what it is and how they are going to get it out. What does this mean for the upcoming future? Basically in less than a week I will be having surgery, which will have me in the hospital for at least 5 days. After I'm released my recovery will be anywhere from 6-12 weeks depending on how I progress post-surgery. My doctor has high hopes for me to not have any major residual effects, aside from a couple of minor issues I should bounce right back. The process is going to be hard and long, but I'm in it to fight and won't be backing down from this. I will be off of work for a while, but plan to spend my time watching Netflix (already getting some good recommendations for what to watch) and knocking out any rehab I need to do. I'm praying along with my family, friends, and tons of others that everything goes smoothly during this process. I know God is going to take care of me during this time as He always has. I have been blessed with a great life and this is just a way for me to possibly reach more people and spread His love out to someone who is struggling with their diagnosis.

And yes, I named my tumor Oscar. It's a little dumb, but I'm a dork and appreciate the chance to blame things on Oscar. :-)