My Tuesday

Today was a big day with my physical therapist. She came to work with me right after the awful breakfast. With my great friend Tom cheering me on, we started off with more practice at getting out of the bed and pivoting into the wheelchair. The therapist wheeled me down to the end of the hallway to a set parallel bars. This was the first chance to work my newly revealed muscles....

With little assistance, I was able to stand up and walk by using those bars. My first few steps felt a little awkward, like I was using someone else's legs. My strides felt effortless and much more fluid than "normal". The physical therapist tested my dorsi flexion and was impressed with my new range of motion. After several boring trips up and down the parallel bars, I wanted to venture through the hallway with a walker.

My quest back to the room was approximately 150 feet, and I was determined to reach my destination. It took a few steps to get used to the aid of the walker, then gained momentum, like a semi bearing down the Grand Island bridge. The therapist wanted me to slow down and take a break, but I was a man on a mission. I made my final destination to the bed and earned a well deserved nap...

Later that afternoon, as my wonderful brother Mike came to visit me like he has every day, the therapist came in to see if I could make it past the final hospital hurdle.... The Stairs! We went to an office which had portable wooden steps. There were 3 small steps on one side, 2 larger steps on the other, with a small platform on top. With little help from the therapist, I was able to stand up and walk up the small steps, on the platform, and down the larger steps. Then, I turned around and walked up the larger steps, on the platform, and down the smaller steps. After a brief break, I did it again....

I was still energetic enough to get some more walking in. We walked down the hallway with the walker. It was about 100 feet. I took a little break in the wheelchair, then walked back to the starting point; racking up 350 total feet of mileage on my new legs today...

After receiving another terrible tray of food, Mike called the very genorous Heidi and Tom to bring a delicious chicken sandwich from Panera's. After dinner, we hung out and played a few games. Overall today has been very productive and promising for what the future has in store!

My Monday

I did not sleep much last night.. However the pain has subsided greatly since the previous post-op recovery days. Pain medication through IV has been eliminated and I am on an aspirin/Tylenol pill dosage as needed for pain. With assistance from the PT (physical therapist), I was able to briefly stand, pivot, and sit in my wheelchair. The process of moving into the chair was a little uncomfortable, but once seated, not too bad. I stayed in the wheelchair for about an hour and a half. With assistance from the OT (occupational therapist), I was able to get back into bed.

Dr. Park came in to see me for a moment. He reiterated that the procedure went well. I asked how many fibers were severed; and he told me that about two thirds of them were cut.

That was pretty much it for today... tomorrow is supposed to be more intense with physical therapy. Hopefully I will start taking steps with some help of course. I will let you know how that goes tomorrow.

My Sunday

Today is better than the previous two days. They took me off the Valium and the Morphine dosage has been cut down considerably. I was able to eat solid food (mashed potatoes, turkey and cherry cobbler) for lunch. I was also able to drink fluids from a straw. They took the catheter out, Ouch. Still quite a bit sleepy, been trying to rest.

My surgery day

8:00 cst, 9:00 est.I'm going in for my surgery. Mom, Tom and Mike will get updates and keep you posted in this blog as the day moves forward. Thank you for all the prayers thus far and continue to do so through the surgery and beyond.

Update 8:55 cst 9:55est: surgery starts

Update10:35 cst 11:35 est: We just got our first update of the surgery. It is going great so far. We are about halfway through the procedure.

Update 12:22 cst. The doctor just finished Kens surgery. He said everything went very well. Kenny just got transferred to a recovery room and he will be on morphine for the pain.

Update 2:18 cst. We just got to visit Ken, he seemed like he was doing well. He was in pain as was expected, but he was coherent enough to ask what the doctor said about the surgery. The morphine/Valium combo is helping to alleviate most of the pain.

Update: After visiting with him, Kenny seemed to be doing very well . He was alert and asking questions. While not moving he said his pain level was a 6/10. He will be receiving Valium to help ease his back spasms. We decided to let him rest for the night.

Update day 2: Kenny is in the recovery process. There is still quite a bit of pain, but he seems to be doing better than yesterday. The doctor confirmed again today that the surgery was a success and he should be progressing as the days move forward.

My Pre-Op Day

So, today was the pre-op day. Keeping to my promise to stay current, here are the events as they unfolded.

The St. Louis medical complex is in the heart of St. Louis. It is comprised of various medical facilities including, Barnes-Jewish Hospital North and South Complexes, Children's Hospital, and the Center for Advanced Medicine. The entire complex is connected via a covered walkway which was great, since it's around 100 degrees outside today!

My morning began at the Center for Advanced Medicine at 8:00am where I registered, gave a medical history, several viles of blood and a hearty urine sample, if I might brag. I was given a special super cleaning soap to use tonight and tomorrow morning. This is obviously used to super-clean the skin and goes to reduce chance of post-surgical infection. (I'm sure this is standard practice and in no way a subtle hint at my personal hygeine) I had some time to kill so stopped in the cafe for some breakfast. Typical hospital quality, but what can ya do!

Next, it was off to Children's Hospital for my pre-op assessment with the rhizotomy team. There I again went over medical history info and signed various consents, etc. They took me right away, which was nice. I already was well ahead of schedule so I was grateful not to have to wait long.

Next, I met with a PT and a cameraman. It was time to make a movie. Now, normally I charge for this kind of work but considering they were ultimately doing me a huge favor with this whole surgery thing, I worked pro-bono. The video is for pre-op baseline documentation to be compared later post-op. I was asked to perform various physical tasks, ranging from walking and running, to the slightly more humorous requests of crawling up stairs and jumping over sticks. Being one not to get in the way of good clinical information, I cooperated and pray that such footage remains contained. (It will, this is a shot at humor). On my way out of the appointment, the surgeon, Dr. Park happened to be walking by. We had a breif conversation and I told him to get plenty of sleep tonight! My four-month post-op appointment was given to me as November 16th 2009. There, another movie will be made (we are currently in negotiations for salary) and the results will be compared to baseline. The staff at Children's is wonderful and the environment set up through the entire hospital is very positive!

Finally, it is time to have "X mark the spot". I went to the Nuclear Imaging where my spine was inked for the incision site. This was easy, painless. Basically, it's a real-time X-Ray machine.

That was it! Now, just relaxing and looking forward to a night of very little sleep, I'm sure. No big deal as from Friday to Monday I have strict orders to be flat on my back! :)

My brother Mike will be updating the blog tomorrow through Monday. I expect that Monday will be my first day I will try to get out of bed!

My Wednesday.

Arrived safely in St. Louis, today after just making our connection which was strategically located miles from our initial landing gate. My ears are still plugged up from the flight! Tomorrow spending the morning and early afternoon at the hospital doing pre-op stuff! Thanks for the prayers one and all.

My Surgery

In just a week my surgery day will arrive! Instead of typing out the info, I have created some links to follow below for the info on the surgery itself! ENJOY!!

My next post will begin the day by day journey!!!

• The Surgery
  

• Specific Info for Adult Candidates

• Video Example of Pre/Post Operation Improvement

• Meet Dr. Park

• Recent News Story on NBC News
  

My Explanation

Cerebral palsy (CP) is an umbrella term for a group of disorders affecting body movement, balance, and posture. Loosely translated, cerebral palsy means “brain paralysis.” Cerebral palsy is caused by abnormal development or damage in one or more parts of the brain that control muscle tone and motor activity (movement). The resulting impairments first appear early in life, usually in infancy or early childhood. Infants with cerebral palsy are usually slow to reach developmental milestones such as rolling over, sitting, crawling, and walking.

Common to all individuals with cerebral palsy is difficulty controlling and coordinating muscles. This makes even very simple movements difficult.

• Cerebral palsy may involve muscle stiffness (spasticity), poor muscle tone, uncontrolled movements, and problems with posture, balance, coordination, walking, speech, swallowing, and many other functions.
  
  
• Mental retardation, seizures, breathing problems, learning disabilities, bladder and bowel control problems, skeletal deformities, eating difficulties, dental problems, digestive problems, and hearing and vision problems are often linked to cerebral palsy.
  
  
• The severity of these problems varies widely, from very mild and subtle to very profound.
  
  
• Although the magnitude of the problems may wax and wane over time, the condition does not get worse over time.

Types of cerebral palsy are as follows:

• Spastic (pyramidal): Increased muscle tone is the defining characteristic of this type. The muscles are stiff (spastic), and movements are jerky or awkward. This type is classified by which part of the body is affected: diplegia (both legs), hemiplegia (one side of the body), or quadriplegia (the entire body). This is the most common type of CP, accounting for about 70-80% of cases.
  
  
• Dyskinetic (extrapyramidal): This includes types that affect coordination of movements. There are 2 subtypes.
  
  

  • Athetoid: The person has uncontrolled movements that are slow and writhing. The movements can affect any part of the body, including the face, mouth, and tongue. About 10-20% of cerebral palsy cases are of this type.
    

  • Ataxic: This type affects balance and coordination. Depth perception is usually affected. If the person can walk, the gait is probably unsteady. He or she has difficulty with movements that are quick or require a great deal of control, such as writing. About 5-10% of cases of cerebral palsy are of this type.
    
    
• Mixed: This is a mixture of different types of cerebral palsy. A common combination is spastic and athetoid.

Many individuals with cerebral palsy have normal or above average intelligence. Their ability to express their intelligence may be limited by difficulties in communicating. All children with cerebral palsy, regardless of intelligence level, are able to improve their abilities substantially with appropriate interventions. Most children with cerebral palsy require significant medical and physical care, including physical, occupational, and speech/swallowing therapy.

So where do I and fellow SDR candidates fall into these categories? In order to be a candidate for SDR as an adult patient, Dr. Park has a clearly defined criteria. Only adults who have "Mild" CP of the spastic diplegia classification are considered for surgery. The term "Mild" is deceiving. It is true that compared to other types and intensities of CP, we patients are on the "milder" side of symptoms and tend to be high functioning both physically and cognitively, however, the toll that muscle spasticity takes on our bodies over time is certainly not mild in the long run. Because muscles in the lower extremeties (hamstrings, calfs, gluteus, quads, etc.) are spastic, they are unable to stretch. Therefore, they are difficult to strengthen. Also, due to their tightness (spasticity), they cause unnatural and unbalanced forces on the skeletel system, which in turn results in pain and degeneration of ligaments, tendons, and overall muscular weakness. This weakness then causes other "normal" muscles to work "overtime", performing functions they are not meant to do, which results in muscle fatigue and recurrent strains, sprains, and skeletal changes in response to the overall compromise of the muscular system.

The command to tense, or increase muscle tone, goes to the spinal cord via nerves from the muscle itself. Since these nerves tell the spinal cord just how much tone the muscle has, they are called "sensory nerve fibers." The command to be flexible, or reduce muscle tone, comes to the spinal cord from nerves in the brain. These two commands must be well coordinated in the spinal cord for muscles to work smoothly and easily while maintaining strength.

In a person with CP, damage to the brain has occurred. For reasons that are still unclear, the damage tends to be in the area of the brain that controls muscle tone and movement of the arms and legs. The brain of the individual with CP is therefore unable to influence the amount of flexibility a muscle should have. The command from the muscle itself dominates the spinal cord and, as a result, the muscle is too tense, or spastic.

As you may or may not know, muscles work in pairs and are named agonists and antagonists. In muscle spasticicty, the tighter muscle disturbs the balance of this muscular relationship, causing the tighter muscle to effectively, "turn off" it's related mate. Therefore, the "off" muscle is not able to be accessed by the body, it cannot be easily strengthened, and the function of that muscle is compensated for by another, causing the chain reaction mentioned earlier of muscle fatigue, etc. One of the most common results of this phenomenon is low back pain for obvious reasons.

Balance and coordination is also negatively affected by CP due to the inability to access and properly use muscles that contribute to balance.

Patients spend their whole lives stretching daily to try to keep muscles as flexible and strong as possible. However, the effects of stretching are very short-lived as no permanent improvement is really ever achieved. Normal-bodied people obviously get stiffer, tighter, and less flexible as they age. For the CP patient, this process becomes one that progresses exponentially, as we already have quite a "head start" on our limited flexibility to begin with. Therefore, a a 30 year old body may very well feel and have the structural deterioration of one that is 40 years. CP patients have to work harder and use far more energy to do daily tasks and physical activities then normal-bodied people. Therefore again, our stamina decreases quicker than most in activities such as walking, running, climbing stairs, etc.

The beauty of the SDR surgery is that it attacks the core problem directly, muscle spasticity. With SDR surgery, muscle spasticity is greatly reduced, and in some cases, eliminated altogether to a normal level!

Now that you have a background of the CP condition, my next entry will be to explain the SDR surgery in detail!

My Rationale

BREAKING MY OWN RULE

I'm not one who has really been a fan of blogging or bloggers in general. However, I do think that such a tool is beneficial when it can help others by sharing experiences and advice that is not easily found elsewhere. Such is the rationale that has prompted me to begin this blog.

FOR THE FORGOTTEN

There are about 550,000 persons in the US with cerebral palsy; the number of new cases per year has increased 25 percent during the past decade; now there are about 9,750 new cases each year, according to UCP. Approximately 70 percent of cerebral palsy occurs before birth, about 20 percent during birth, and most of the rest within the first two years of life.

What is most surprising is that 80% of the CP population in the U.S. is over the age of 21! Although the picture that usually leaps to mind when one thinks of cerebral palsy is a child in a wheelchair or braces, the large number of adult cerebral palsy patients underscores the need for continuing cerebral palsy management throughout adulthood, with all its myriads of challenges to be met for quality of life. What happens to those adorable poster children with cerebral palsy? They don't fade away. They grow up, they grow old; and they continue to have cerebral palsy and face its changing challenges every day of their lives. (Don't worry, we're still adorable!) (http://www.oandp.com/articles/2005-09_02.asp)

This blog is primarily written for people who wish to learn more about the condition and its longer-term effects on the adult patient as well as those who suffer with adult CP and are curious as to the specifics of the Selective Dorsal Rhizotomy surgery which has been refined by Dr. T.S. Park at the Children's Hospital in St. Louis, MO.

This surgery is one that I have decided to have in three weeks time. It is one that I spent the last year researching and physically preparing for. It is what I hope will mark a "new beginning" for myself. More importantly, I hope to keep this blog current as the events unfold. In keeping such an accurate log of information, I hope to preserve the true feelings, developments, milestones, setbacks, and any psychological impacts I may experience along the way.

It is my hope that this description will be of help to my fellow adult CP patients out there who are considering this procedure. I know for me, this procedure was stumbled upon luckily as I did an Internet search. It is sad that such a breakthrough of this kind is not better communicated in the medical community. Unfortunately, this goes to illustrate the lack of focus and priority the adult CP population is receiving in this day and age. We truly are a forgotten group, we are the CP kids from yesterday all grown up.

CP is given much attention by the medical community in the early childhood years. Obviously, it is in these years that the most improvements can be made to reduce long-term effects of CP. However, due to its pediatric focus, most patients do not have a medical expert to oversee their progressions, regressions, and changing needs as they age into adulthood. Most of us have been given a physical therapy regimen to follow daily (although I have yet to meet any that truly follow it consistently) and sent on our way to maintain a body that is only going to worsen over time due to aging, strain on joints, and poor postural habits due to muscular and skeletal compensations to keep our heads on straight!. Most also have had some corrective orthopedic surgery in their youth, however, these surgeries only provide a postural "quick fix", that most likely will not last the long-term. Dr. Park is the first surgeon in the U.S. (perhaps the world) to attack CP at it's core "trouble-maker", muscle spasticity.


Although this procedure has only been performed on around 50 adults to date, I was lucky enough to find two patients locally who happened to be in the "Lucky 50". I want to thank Marty from W. Seneca, NY and Brad from Columbus, Ohio for their support and help in my search for answers in this process. I only hope we continue to grow this chain of support for the many future adult CP patients in the "SDR Club". I also want to thank the best Physical Therapy team in the Ken-Ton area. Dorothy, Andy, Jane, Erin, Dave, Jim, Alicia, Silbie, Sue, Heather, Amy, Joan, Bonnie, Sam, and Rachel. I think they are almost as excited as I am and I know that in the long-run, their efforts in my rehabilitation will be unmatched!

A final note: I have titled this Blog "My Selective Dorsal Rhizotomy Journey" for two reasons. One, it is my hope that the title triggers Internet search results quickly for those potential surgical candidates of the future. I apologize for not having something cute and fancy! Second, in keeping with my favorite TV show, "SCRUBS", all posts will be titled, "MY......." as was the case of each episode of the hysterical program.

My next entry will give an explanation of the causes, symptoms, and roadblocks of CP and why the SDR surgery by Dr. Park is the only one of its kind offered to the young adult patient of 21-39 years of age.