Tag Archives: selective dorsal rhizotomy for adults

The L Word

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I hate the treadmill.

If our ancestors knew that we pay money to walk in place on a large, loud machine they would think the world had gone to hell in a handbasket.

(I love to use that phrase. I feel like it is very 1950ish of me. Also…everyone has been saying the world is going to hell in a handbasket for a good 75 years, so the punch said phrase is meant to deliver has lost a bit of its flare. )

Despite my hatred for the treadmill, I climb on the one at my gym every morning around 5am. I select a machine situated by the TV showing the local news, pop in my headphones, cue up a playlist, and start that ol treadmill moving.

Just like the days of yore.

Except my ancestors were likely hiking up a hill to fetch the morning eggs rather than walking in place on a mindless machine.

I hate the treadmill, but I love food and being able to fit into my current wardrobe, so I walk and run every morning.

The deal with this is just a year ago I could not run. Two years ago, I could barely walk. My time spent on the treadmill always reminds me how far I have come since the days after my surgeries and I am thankful for this mindless task I can perform at the gym each morning.

Because of these surgeries, I have become part of a unique club. I was actually a member of this club my whole life and never really knew it or understood my fellow members. This unique club is comprised of individuals like me: people born with cerebral palsy and living life with the effects of a disability. Through the wonders of social media, I am part of several Facebook groups in which I get to interact with others in this club. I see videos daily of kids who are rocking life as they fight for steps or sometimes even simple movements. I have met adults who although they share a CP diagnosis, they are moving mountains and not letting a physical disability slow them down in any way.

And so daily I get on that treadmill and I walk and run for those members in this club who unfortunately cannot do the same.

Seeing these individuals on a daily basis through Facebook and through their videos has made me painfully aware of something in our culture. It is the use of the word “lame.”

I have never used the word myself because it hit just a bit too close to home.

And quite honestly it faded from popular vernacular for a bit.

However, it has found its way back into mainstream vocabulary and I find it disturbing.

Thankfully we have reached a point when the majority of society has stopped using the words “retarded” or “gay” in a derogatory manner. We are fighting to end racial slurs and prejudices. As a whole, we have come to understand that when you use a word that represents a group of people as a way to explain something as being “stupid” or bad, you are insulting said group of people.

It is mean. It is hateful. It is unnecessary.

As a culture, it is time to add a new word to this list of words sitting in degrogatory banned camp. That word is “lame,” my friends. When something or someone is lame, that means he/she cannot walk. It does not mean that he/she is stupid or dumb or undesirable.

It simply means that an individual cannot walk.

Fortunately our society has graduated past the belief that disabilities define the person, rendering those with such issues as useless to the good of the whole. This advanced mindset should also spill over when we consider using words whose correct meaning explain race or maladies as a way to denote something bad that is going on in our lives at the moment.

If you are using such words or phrases, I implore you to take a minute to think of their true meaning and then apply that to how you are using the words in your everyday speak.

Then ask yourself how you would feel if a large portion of our society began using your name in a derogatory manner.

“That is so Sarah that you forgot to set the DVR.”

“That show is soooo Sarah. I cannot stand it.”

“Stop being so Sarah. You are getting on my nerves.”

(*Apologies to all Sarahs. It was simply the first name that popped into my head. There is a reason I write nonfiction as opposed to fiction: I am horrible at developing characters’ names.)

Not so fun, is it?

I am stepping off my soapbox now and climbing back onto the treadmill. That Valentines Day candy isn’t going to burn itself off my hips.

Be blessed, friends. Put love out there and not hurtful, mindless speak.

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!

 

 

 

 

The Journey Home

We are home. These two sweet faces have been within inches of my own for a little less than 24 hours now.

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So all is right with our world here at casa de Phillips .

That being said, nothing was right with our journey back home. Wednesday morning (discharge day) started early at 4 am with a pain pump change. That was followed up with a bedside bath and a nurse with an ingenious way of washing hair using washcloths (my back cannot get wet until tomorrow which means being creative with how I wash my hair.) I was able to put on clothes , dry my hair and put on a touch of make-up. I was a new woman, ready for my re-entry into the world of the living.

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The rest of the morning was a flurry of meetings with doctors (Dr Park was giddy with the improvements I had made), going over discharge instructions, completing a mini-PT session, packing up my belongings and gathering all my fun new prescriptions. Around nine am, I felt nausea and a headache coming on and notified my nurse. I was quickly given IV medicines and we kept going about the process of being discharged. The weather was threatening big storms across our entire travel path for the day so we were anxious to get out of the hospital and begin the journey home. We returned to the hotel where Tobe had been staying for eight days ( that is a fun bill to pay) to finish up that packing, eat a quick lunch and then go to the airport.

Once at the hotel I was really not feeling my best. I napped on and off while Tobe packed and managed to eat a tiny bit of lunch. Our shuttle arrived and drove us to the airport. It was during that journey when I began to feel horrible. The conversation between our driver and another passenger turned to food, leaving me praying that the small salad I had eaten would stay down until we arrived at the airport. My head was also hurting significantly.

We arrived at the airport, checked in and navigated security (where I was given a very thorough pat down due to my inability to walk through a scanner. The agent was a bit upset at first when I told her I had a large incision on my back due to spinal surgery and asked her to be careful in that area. I am not sure what she suspected me to be smuggling under my bandage.) Upon arrival at our gate I felt so miserable that I sent the husband to a local gift store to retrieve an empty shopping bag to use in case of a stomach emergency. We were able to pre-board first, securing a seat at the very front of the plane. As usual the Southwest flight crew was beyond amazing and offered any assistance they could. As the other passengers boarded, I am sure I got my fair share of alarmed looks. I know many were concerned they were flying with the world’s most contagious person. The husband kept loudly saying “spinal surgery” to put everyone’s fears at ease.

The flight was long and filled with rough air. I slept through a lot of it but did wake up near landing (which was prolonged due to bad weather). We finally landed, was greeted by my angel of a mother-in-law and eventually made it home. After being home for about an hour I felt better but was still bad off.

The next morning I woke up, took my mini bath and the husband washed my hair in the kitchen sink. Ladies, you know you have a good man when he will wash your very long, very thick hair in the sink. Especially when he is used to merely washing hair that is no more than an inch long.. The original plan was for him to go to work and for my MIL to come later in the day to take me to PT. It became pretty obvious , as the headache and nausea returned, that I could not be home alone. By 8 am the pain was unbearable when I was up and tolerable laying down. Tobe called St Louis and it was believed that I could have a cerebral spinal fluid (CSF) leak. The prescription was to lay flat and drink lots of caffeine.

Side note: I gave up soda over two years ago. I have consumed more cokes in the past week than I care to think about. I try to flush it out with lots of water. I also try to forget how delicious all those sweet cold chemicals taste :).

Thursday was a haze as I stayed flat on my back, getting up only to use the restroom. Every time I sat up, an immediate horrible headache returned. Friday morning proved to be the same and the husband put in another call to St Louis. Once Dr Park finished surgery, he was able to consult with the nurse and it was decided that there likely was no CSF leak but rather It was inflammation of the meninges (coverings of spinal cord and brain).

This was good news in that I was very concerned that had it been a CSF leak, I would need a blood patch to resolve it. Normally such a procedure is not a big deal. However, I have an incision on my back that is very specialized done by a world-famous doctor who happens to be ten hours away. Having a regular ER doc come close to that site made me really nervous.

The bad news was that there was the chance that rather than an inflammation of the meninges, I could have an infection of the meninges ….. Otherwise known as meningitis. Good times. We have carefully monitored my fever since being home and it has stayed below the 100 degree threshold, which was a good sign (my body temp—just like my blood pressure —runs low.). As of yesterday morning, I have been fever free for over 24 hours.

The praise in all of this is that I now have a prescription for steroids and they are working! Yesterday I barely had any headaches and was able to sit up for a longer period of time. My parents are here now to help out some (apparently the husband needs to return to work…ha!). Mom took me on a drive yesterday and it was glorious. I even took my fancy blue walker out for a spin up and down our street late in the afternoon.

I finally feel like I am past those first days at home when everything was terribly frustrating because I was struggling with what appeared to be unrelated symptoms to the actual surgery. This morning I am finally off to my first official physical therapy session here at home. I am ready to test our these new legs and see what I am capable of … While also fitting in some good rest to maintain my stamina.

On discharge day, Dr. Park told me I would be back to myself in three weeks. I plan to do just that!

Thanks again for the outpouring of love, prayers and words of encouragement . They have cheered me on every step of the way!

Surgery , Day One and Day Two

So I had my spine cut open on Friday morning.

What did you do?

Seriously I went in early Friday morning to Barnes Jewish hospital in St Louis to have Selective Dorsal Rhizotomy. The surgery went well (at least I think it did. I was sound asleep.) I do remember being wheeled back to the operating room. At that point I had been given nothing in the way of drugs, other than a regular iv. As some of their doctors and nurses began their meeting around me as to what was going to be done, I started to worry that no one realized I had not been given anything to sleep.

Isn’t that everyone’s fear that surgery will begin and you will be awake accidentally ?

Fortunately someone said they were going to give me something to relax through my iv line. The next thing I know was that it wa four hours later and I woke up on recovery terribly thirsty.

I was hoping for a Route 44 ice tea from Sonic.

Instead I was given three ice chips.

I was eventually moved onto the floor and given a room. The parents and husband were with me the entire time. I was given Pepsi and crackers (Praise The Lord ) which felt like the best meal ever in the history of food.

The pain meds made me go on and on about how delicious that cold Pepsi happened to be and how tasty my little package of crackers were to my ol empty stomach.

That went on until my stomach said ,”no thank you” and the husband had to stand
By while everything came back up.

(You know what couples should do in premarital counseling? Deal with sickness in their potential spouse. The husband and I try to leave a sense of mystery between us but when one is sick the other jumps right in. My husband is a rock star when it comes to helping me out in not -so-glamorous times. He doesn’t even flinch.)

The day of surgery and post op day one were a bit of a roller coaster. My back has little pain , but it also has an epidural in it. The worst has been my head hurting and nausea. I could not tolerate light or anything in front of my eyes those first two days. The doctor actually sad soda would help the headaches. I quit drinking all sodas two years ago. However I have had so much of it in the past 24 hours. I try to not think about all the sugar I am consuming with each (cold, delicious ) gulp.

My first two nights I had roommates move into my room in the dead of night. There technically are no private rooms here at Barnes . We had one at first but knew someone most likely would move in. I never thought it would be around 2am.

The first was a very disoriented older lady. She was tolerable and left the next day.

The next was a disoriented lady who was anything but tolerable. She strung profanities together that I never realized could go together . She was extremely loud and mean. This did not help my need for lots of rest. The husband and several nurses stepped in and worked something out so that I could move rooms. My new roomie is quiet, normal and needs to rest a lot herself.

Health wise I am much better today (post Op day 2). I have been headache free since noon and have eaten just a bit more than on previous days (food has not sounded good at all lately). My back is very tender and my legs are somewhat numb (due to the epidural ). Tomorrow I get to sit and stand. After laying flat since Friday, sitting up sounds like a luxury. I will let you know just how decadent those thirty minutes in a wheel. Hair are tomorrow.

Until then, good night, dear readers.

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(The picture is my viewpoint from my flat on the back position in bed. Exciting, huh?)

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