Meet me in St. Louie

Back a few months ago, I asked the husband if he would be interested in taking a vacation to St. Louis. Always one up for an adventure, he replied with a casual “Sure.” I then explained that said vacation might involve a hospital stay and a recovery period. Fearing that I may be planning a vacation based on the Hangover movies, he quickly asked me to explain. Once I did, and he discovered there would be no tigers in the bathroom and disturbing face tattoos, he was on board. (BTW, I have only seen the first Hangover movie and have now referenced it twice. You are welcome.) Allow me to explain to you as well as to why we are vacationing in middle America so that our trip involving hopsitals makes a bit more sense. At some point when I was born (29 years ago…wink, wink), my brain was most likely deprived of oxygen. Because I am adopted, the conditions around my time in utero and my birth are mostly unknown. However, we do know something went a bit wrong. This oxygen deprivation caused me to have Spastic Diplegia. In very (VERY) general terms, Spastic Diplegia is when the brain is sending faulty messages to nerves to always tighten some particular muscles (in my case, in my legs). Some of you reading this may have known me for twenty years and have never heard me mention that term in the course of our friendship. It is not something I speak about often because it is not a huge part of who I am. Growing up, it was something significant I dealt with and had several operations and wore leg braces at different times when I was very young. Because I grew up in a small town, people just knew this about me and no one ever asked. Friends didn’t care about it one way or another and so it never really became too much of a topic of conversation. My parents were awesome in that it was not a big deal around our house. I missed the occasional day of school to go to out-of-town doctor appointments and got to eat at a nice restaurant of my choosing. Fun times in the life of a ten year old. Other than that, it was life as usual. My parents are pretty cool like that, in a very “low drama” kind-of way. Most people with Spastic Diplegia receive treatment as a child and as an adolescent. Once they move into adulthood, it is thought that nothing more can be done. My case is very mild and I was dismissed from the doctor following my case around the age of 16. I remember him saying that I was perfect from the knees up and if I just wore shoes with heels a lot, I was good to go. (Side note to all doctors: Please do not tell a sixteen year old girl that there is a small part of her body that is not perfect. I was a pretty confident kid but that comment stuck with me for quite a while. Again, I was fortunately blessed with parents who stressed such sentiments like “It is not a big deal.”) Fast forward to life now: I am very active. I lead a healthy lifestyle. I have an adoring husband who thinks it is pretty cute when I am a bit more clumsy first thing in the morning or when I am super tired. I wear heels about 90% of the time (Praise the Lord for the wedge coming back in style). I worry more about the fact that my daughter only eats about five foods and my son entered the world of Pokémon obsession than about tight leg muscles. However, my body is aging a bit faster than it probably should be. I have always had aches and pains. My legs can feel like really tight rubber bands, especially in cold weather. Things have always felt like this, so the aches and pains are not alarming but rather just inconvenient at times. What honestly caused me to evaluate these pains and the overall aging of my body was an eye doctor visit last November. (It is always the odd stuff that makes us evaluate life, huh?). Anyway, I went in for my yearly eye exam and the doctor was really concerned about the worsening of my eyes. I have always had bad eyesight and have worn glasses/contacts since around first grade. During that particular exam, the doctor said I would need bifocals within a year and that my eyes were getting significantly worse at a faster speed than what is normal for someone my age. Lovely. I mulled over those thoughts during Christmas last year, wondering if my time spent on the computer was the causing factor to this decrease in eyesight. I pictured myself in huge bifocal glasses and prayed that the thick “Nerd” glasses that are in right now would stay in forever if I had to make such a fashion statement with my eye wear. Then I began to really listen to my body and realized that it was not only my eyes that were aging quickly. It was my knees, my hips and other parts of me. Despite the fact that I work out five+ times a week, eat relatively clean and maintain a good weight, my body was older than its 36 years. So I began Googling. Through the magic of Google I ruled out various terminal diseases (Who doesn’t love a good Web MD checklist late at night that leaves you wondering if you have mere weeks to live from a rare and vicious brain eating amoeba?). I then stumbled upon the aging effects of having spastic diplegia. Despite my active lifestyle and all the interventions my parents made sure I had from a very early age, my body was wearing down. I even discovered that the muscle tightness in my legs can effect my eyes. Now I no longer feared the bifocal glasses or the brain-eating amoeba but instead started to worry that by the age of 50 I could be in a wheelchair. Seriously. Deciding it is probably pretty hard to participate in early morning boot camp at the gym in a wheelchair (That class is one of my loves, by the way. It keeps me sane and makes me a better mommy and wife.), I started to research options. That is when I came across Dr. Park, Selective Dorsal Rhizotomy and the St. Louis Children’s Center for Cerebral Palsy Spasticity. In very basic terms, Dr. Park has developed a way to treat spastic muscles. He does so by cutting some of the nerves in the spine that are sending the faulty message to the muscles, causing them to be spastic. (If interested, read more about it here in which someone has done a much better job of explaining a complicated four hour surgery than I have. Of course, they used more than one sentence to do so as opposed to my super brief explanation.) This surgery is mainly done on children. Dr. Park is the only surgeon in the United States who will perform it on adults and has only done it on 66 adults to date (I will be number 67!) Long story short, this summer we spent a good portion of our time devoted to applying for SDR (what all the cool kids call Selective Dorsal Rhizotomy). I had various doctor appoinments, tons of hip xrays, physical therapy evaluations and two MRIs (One of my brain and one of my spine. Praise the Lord for insurance because the total bill for that would have been around $20,000 without insurance coverage. Also, want to become best friends with your insurance company? Have two MRIs. They will call you right up and ask what is going on.) We finally got the word that I was approved for SDR at the end of July. Scheduling takes a while, especially for adults, and I was given the date of October 25th. In case a calendar is not nearby to where you are at the moment, October 25th is next Friday. So the husband and I are vacationing in St. Louis (while other people are staying at our house…which is just a few doors down from a police office…and is in a neighborhood highly patrolled by the local police. Just FYI.) for eight days. I have two days of pre-op appointments and surgery is on Friday (and takes about 4 hours). I then get to spend three days in bed laying flat on my back to prevent any cerbalspinal fluid from leaking out while the incision heals. For those of you concerned about the fact that I never jumped on the Downton Abby bandwagon, no worries. I plan to catch up during those three days. On Day 4 post-op, physical therapists get me up out of bed and I basically retrain my brain on how to walk again. Day 5 is intense PT and then I am released to go home. Good times. It sounds dramatic but it actually is pretty exciting to walk without tight legs. The process of learning to walk again happens fairly quickly as well. I have amped up my workouts in the past two months, getting my body as strong as possible for that Day 4 when I get out of bed for the first time. Dr. Park advises adult patients to have strong core muscles to help in this process. My abs are actually pretty tight (they just never really see the light of day under my Mommy swimsuits in the summer), so I am thinking those 200+ situps I do a day have not been done in vain. The recovery period is long, even after I return home. I will be in physical therapy five days a week for quite the while and then can eventually switch over to being back in the gym as my physical therapy. I cannot drive for 2-3 weeks and I likely will be using a walker at different times during those first weeks at home (The children are thrilled about this one.) We have so many family members and friends on board to help us with this recovery. This is one of those “It takes a village” kind of times. The kids know what is going on and they understand it is time for them to step up and pitch in (which they do already but it is time to really step it up now). As always, the husband is ready for a challenge and does not even bat an eye dramatically when faced with this challenge for our family. So we are vacationing in St. Louis this fall. Anyone going anywhere a bit more exciting ?     (I will be documenting this journey on the blog. If you want to stay in the loop, you can follow the blog on Facebook or subscribe to it as well. Thanks!)

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8 thoughts on “Meet me in St. Louie”

  1. Wow. Praise God for your research and selection for this surgery. We will most definitely keep you in our prayers starting today. This is big but we know God is bigger!

  2. Lynley, our thoughts are with you through this upcoming new journey. I have often wondered how that condition had affected your adult life, but since we have mainly seen each other during not so festive events the past couple of years, I really never found a good time to bring it up. I am so happy that you have found a procedure to possibly minimize the effects and stop this premature process.
    We will be praying for you and for a successful recovery !
    Love you!
    Kevin

  3. I’m so excited for you! We (my 13 yr old son and I) have had the pleasure of meeting Dr. Park and his team. Johnny had SDR 3 yrs ago, he is a quad cp, and it was one of the best decisions, and opportunities ever for him. This procedure has def. improved his quality of his life. Will be thinking of you from WV, God Bless!

  4. LYNLEY. First, thank you so much for your fb message….I was so surprised to hear about your SD- shocked, actually. I had no idea and although I already greatly respect and admire you, those feelings have only increased -wow. I have heard about that CP facility in St. Louis and would love to one day visit….it has a stellar reputation and I know they will treat you wonderfully! Your surgery has definitely been mentioned by PT’s through the years, but I don’t think we are there yet for Bennett~ that said, I will definitely be keeping up with you along the journey and praying for you every step of the way! Lots of hugs and love to you and your beautiful family~ I am very well aware of the “it takes a village” amidst our numerous surgeries, etc. and I am so thankful you will have so much love and support along the way!

  5. Thank you for the well-written information. I love you so much, Lynley. Of course my prayers will be centered on you in the upcoming weeks.

  6. Well your as elegant with your writing of you life and up coming surgery as you are when I talk to you in your daily life. I have always admired you if I never told you that I want you to know that now. You always have a ready smile yes even at 5:30am workouts and when I say your are perfect to the others in class and use you as an example it’s because it’s true! You always workout so hard and never complain even though I know your in pain most days. Something I didn’t know until recently. That’s amazing your such and inspiration and fun with that great wit and ready smile. We will miss you in class but I look forward to your progress and relief you will achieve through this surgery! I wish you all the best and lot’s of prayers always!!

  7. Dear Lynley,

    Welcome to the Dr. Park SDR club! As you know, I had my surgery with Dr. Park (#64, I think) almost seven months ago. Your day is finally here…YAY! I am sure you are resting comfortably tonight. I am looking forward to following your progress. You’re going to do GREAT!

    Nicole

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