Tag Archives: SDR for Adults

365 Days

SDR pic365 days ago I began a journey. On a Friday afternoon late last October, I woke from a four hour surgery, thirsty and begging the nurse to bring my husband back to the recovery room. (She gave me two ice chips and said my husband would have to wait to see me. She is not my favorite person ever.) As I lay there in that recovery bed, flittering between the last remnants of drug-induced sleep and consciousness, I contemplated the huge life step I had just made. I looked at the legs laid out before me. Legs that had made up so much of my story up until that point and wondered how as the composition of those legs were changed, how my story may change.

It would take a while for the changes in these legs of mine to be fully realized (and another surgery) but those changes did occur. As I fought to wake up on that Friday afternoon in October, I attempted to process what had just occurred. The road to St. Louis had been quite emotional and tedious, as we gathered the needed materials to be considered for the surgery and as we waited for the call to verify that I was indeed a candidate. When my mother entered the recovery room (and I had eaten two more nourishing ice chips) I asked her if they had actually cut the nerves because I still felt tightness in my left foot. I can remember the look she gave me as she reassured me that yes the doctors had actually done something during the four hours they spent with me in the operating room.

I can be a bit loopy when under heavy sedation and tend to force those around me into random, and slightly panic-induced, conversations.

I can also insisit on eating and drinking large amounts of food after coming out of heavy sedation, which is also never fun for those around me because such indulgences never quite settle well with my stomach.

Obviously, I am loads of fun in such circumstances.

As I have been looking back over this year as my one year SDR anniversary has been approaching, I have been filled with so much emotion. In some ways, the year has passed quickly but in other ways it has been such a long one for me. It feels like our home has revolved around “Lynley’s Recovery” (seems like that because it has. Sigh) and little else. Our calendar has been this perpetual reminder of surgery dates and PT appointments. I have grown a bit sick of myself in all of this.

So where am I now in those journey? I would say a pretty good little place. It has been long. February and March were brutal (If we are being honest, April wasn’t the best either and May was no shinny penny. ). Recovering from PERCS was significantly more challenging than we ever expected and I had to slow way down to tackle that mountain. We tried to find bright spots during those months, such as the joy in navigating the asiles of Target in the motorized cart, but those were long days and not being as mobile as I have been in the past was hard on the psyche.

The emotion that has been felt this week really centers around so many things. Gratefulness for being able to walk this journey. Exhaustion for having to walk this journey. Confusion for why this journey exisits. Learning humility in the journey when various friends and family have worked in ways to make my recovery better (I litereally did not cook one meal the entire month of November for my family.)

Many ask where I am physically at this point, typically followed by the question, “Are you fully recovered?” Honestly, I do not even know how to answer such an inquiry. Am I fully recovered? Possibly, but not really. This road is long and “being recovered” sounds like healing a broken leg and not altering a life-long physical pattern (However, I typically answer “Yes” to this question because the inquirer  is simply being thoughtful and no one appreciates a jerky response.). Physically I am good. The tightness that has been ever-present in my legs, tightness that was getting tighter as the years progressed and rapidly aging my body, is gone. It is just simply gone. There are days when that still blows my mind. People have asked about the tightness (AKA Spasticity) and what it feels like. My best way to explain it is like rubber bands are constantly holding back full range of motion. The tightness is not similar to muscle soreness from a hard workout or sitting for an extended time but rather like bands that refuse to release. As I aged, those bands continued to constrict. When I woke up on October 25, the rubber bands were simply gone.

Amazing.

Rehabing after PERCS is where all progress made at the end of last Fall came to a halt. Although the lovely pink cast (No one ever let me choose cast colors again. Pink?! Why did I not opt for black?)  was removed at the end of Febuary, I was still really struggling with mobility as late as May. There were some gray days during that time but I kept pressing forward (Thanks to the encouragement of my husband) and finally started to see the light at the end of the tunnel. Then one day I noticed I was walking faster, with much less pain, and my ankle and foot were not swollen by the end of the day. My physical therapist graduated me from PT at the end of July, a day that was celebrated more by my kids than by myself (Bless their hearts. I do not even dare add up the hours they sat in the lobby of that PT office this past year.). From that point, things continue to improve daily. Limitations that held me back in workouts in the past—whether from tightness or rehabbing my ankle— are fading away. I happily skip right past that motorized cart in Target and grab a regular buggy like everyone else.

(Side note: That motorized cart may look grand, especially on those days when you are tired and you simply want to shop all of Target’s glory in peace without worry of sloshing your Starbucks latte. Here is what one does not realize about those carts: They are big and hard to turn and make this horribly loud noise when one must back up. And despite the fact that the cart was plugged in to charge when you first started your shopping excursion, the battery can die right in the middle of the store leaving you stranded with a basket full of groceries. Also, most employees are not very gracious when you accidentally turn a corner a bit too sharp and knock over a display. )

So this journey…it has been long but it has been good.

My journey actually began before that day in October. It began at that moment when something went a bit wrong in my brain’s wiring and the signals were crossed to those muscles. I have reflected a lot during this year as to why things are they way they are in regards to my diagnosis. For me, the reason behind why I have spastic muscles remains a mystery. We do not know what happened in that delivery room, in those moments before or after birth that slightly scrambled a small part of my brain that spends messages to the muscles in my legs. Although my “condition” (aliment?  \Predicament? Malady?) has always been known to me, it was not something openly discussed in the past with many individuals. For one, it was not a huge deal for my parents and therefore was not a huge point of life drama for me. Second, I just have never felt super comfortable discussing such matters.

I have had many theme songs this year. Songs that have rallied me on (Thank you, Katy Perry, for realeasing “Roar” last fall because I still have a cheesy 14 year old girl living inside of me.). Songs that have inspired me. Songs that have focused my rehabilitation. One of those songs has been “You Make Me Brave” by Amanda Cook. I can be all “I had to be brave because I had surgery” obnoxious here, but that is not how this particular song speaks to me. The lyric “You called me out beyond the shore into the waves” encapsulates my vision of this journey. Because here is the deal. This thing about me…. this thing that I have secretly wished would not be part of who I am for 36 years… is basically fixed (*). These past 365 days I have wanted to channel the eight year version of myself and tell her “It’s okay. It gets better. Things are made better beyond what you ever imagined.” But in the “fixing of these things” I have discovered that it was the very thing about myself that I have always wanted changed who made me the person I am and is the thing that God used to shape my heart.

He did not call me this year beyond the shore. He called me repeatedly over the past 36 years to step off a shore of fear and comfort into those waves. He called me to get on with life and be brave even when “things” made me want to be hidden at times.

These past 365 days, I have wondered more than a few times what life would been like had I had SDR as a teenager. This operation was in its early stages in St. Louis when I was in my teens. In fact, upon meeting Dr. Park (the amazing surgeon in St. Louis who is one of my heros…and a hero to so many others…and really the picture of humility and graciousness), he told me how he knew my childhood orthopedist, which lead me to believe that most likely my childhood orthopedist knew that SDR was happening a mere six hours from my hometown and not once did he provide it as an option for my parents. If you know my parents, you know they would have been all about checking into it and seeing if I was a viable candidate at that time.

Yet if I had experienced the surgery at let’s say 15, rather than another heel cord lengthening procedure like I did that year, and this “thing” about me was made irrelevant, would my journey be completely different? God has redeemed so much of my story, as he has yours. He called me by name, saying that my birth story (born with a disability to an unwed mother) was not an indication of my life story. He has shown me that things which appeared to be flaws and limitations were the very things he was using to set me free.

I paid a lot of money this year to realize all of that.

This journey is only beginning. I am so beyond grateful for the past 365 days, for the countless individuals (friends, family, nurses, doctors, PTs, and my fellow SDR peeps…both adults and children…who understand this journey.) who have rallied beside me, encouraging me along the way. I am grateful that a doctor in St. Louis realizes that spasticity can indeed be splayed and for his phenomenal team. I am grateful for parents who instilled in me what the important things in life are and that the little things simply do not matter. I am grateful for a husband who has been my rock for so long, but especially this past year. He has filled these days with laughter and encouragement and lots of Sonic beverages.

Sometimes we let our greatest fears serve as our biggest hesitations in life. Yet those fears are the very thing that will let us one day fly.

365 days later and I am soaring.

 

“There is freedom waiting for you

on the breezes of the sky.

And you ask, What if I fall?

Oh, but darling,

what if you fly?”

-e.h.

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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!)

The Second Leg of My Surgery Journey

Because we are way into traveling to exotic locations lately, the husband and I are hauling the suitcases down from the attic and heading back to St. Louis this weekend.

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(Just Kidding. We really love St. Louis. It is a fun city with lots more going on than just a big arch.)

Sunday marks three months since I had SDR in October of 2013. These past 12+ weeks have gone by rather quickly. I imagine that has more to do with busy days of homeschooling, physical therapy and that whole Christmas business that happened back in December than with the actual passage of time itself.

The question I get right now is “How are you feeling?”

My basic answer is “Wonderful!”

At three months post-op, I feel like the strength that I had lost in my legs due to having SDR has returned. My gait is greatly improved (and faster) and aches and pains I felt before have disappeared. In December, I bumped my physical therapy sessions down to twice a week and headed back to Boot Camp class at my local gym. Being back in that setting really made me feel like things were getting back to normal and also made me see true results from having SDR. The sleeping issues I was having post-op are resolved and I am no longer up watching random television at three o’clock in the morning (The introvert in me who relishes quiet moments to herself slightly misses that. My body’s need for sleep does not.)

I still have sensory issues in my legs (which one should expect when have 2/3 of one’s nerves cut). Basically it feels like my legs are semi-asleep from the middle part of my hip down. I help control this unusual sensation by wearing shoes most of the time and by stretching and massaging of the legs during the day. My knees have also given me trouble, as the constant beating they have endured for 36 years of dealing with spastic muscles is now more apparent now that the spasticity has been alleviated. These issues are all minor and not interfering with daily life. My back feels great and I cannot even tell that I had my spine cut open during a major surgery.

Since I am doing quite well and life has returned to its usual business here at casa de Phillips,  we figured we would shake things up a bit and head back to St. Louis for another surgery.

Obviously, our health insurance company loves us.

When we were in St. Louis in October my neurosurgeon recommended that I have PERCS (most likely on the left leg only) in the months following SDR. I have had similar operations as a child and he felt having it post-SDR would yield some great results. The husband and I agreed and figured having this procedure as soon as possible would be beneficial. Everything was scheduled for January, including follow-up appointments and PT evaluations. Because I will be dealing with a new surgeon (same office…just different surgeon because it is a different procedure) and because we live in another state from this doctor’s office, I simply asked that the two office managers talk among themselves and let me know of a date that works for them.

January 28th was deemed the day where everyone’s schedules could come together nicely and I could see two surgeons and one physical therapist all in a cozy afternoon.

On Sunday, the husband and I leave for St. Louis once again. Monday is filled with these appointments and evaluations (and temperatures in the teens. Our thin Southern blood is going to revolt over that aspect of the trip.). Tuesday is the day I will have PERCs (which is out-patient) and we travel home on Wednesday. A 3.5 day trip seems like nothing compared to our eight day stay last time.

My goal is to resume regular life the following week. I am pretty tough and all moms know when mama is down the whole ship slightly sinks (however, our ship floated quite nicely during the last recovery period, thanks to the husband. However, I hate for him to have to pull double-duty again and for friends to have to bring our dinner for the length of time they had to in the fall. ). We are going into this surgery a bit blind. The doctor is not sure if he will lengthen the gastroc muscle or the Achilles. Lengthening of the gastroc would mean simply wearing a brace for a while (Ugh) while lengthening of the Achilles would mean a cast (double ugh). I am attempting to put on my big girl attitude and accept that wearing a brace for a few months can be tolerated (I will pull off a cute look, even with a brace) and my husband has strict orders about what type of cast I want, if we get a say in the matter (girly colors, waterproof). The decision of what is going to be lengthened could be made in the operating room. I have prepared myself that I may wake up with a big ol cast on my foot. I have dealt with braces before as a kid, my mom using colorful tube socks to cover them up (God Bless the 80’s) and casts at various times (My older brother once colored a set of my casts with magic marker…he was ahead of the game when it came to colorful casts. )

My kids are giddy over the concept of a cast. They have been promised as being the first to sign it.

My older brother will just have to wait his turn in line…

We will keep the blog updated during the course of this second leg (excuse the pun) of our journey.

Blessings!

 

 

 

 

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