Friday, July 1, 2011
Saturday, July 17, 2010
Prospective candidates feel free to email with questions at email@example.com
* Dr. Park just performed his 2,000th surgery in July 2010!
Sunday, August 16, 2009
I am seeing gradual improvements in my muscle flexibility. However, much work is needed in strengthening, especially on my left side which has been extremely under-utilized my whole life.
The chronic back pain remains. I expect to request my MRI/Xray reports on Friday unless I hear from the neurologist beforehand. If nothing major shows up on those tests (which I expect), I will proceed with investigating injection therapies in addition to maintaining my daily physical therapy. A probable cause of this right side low back pain is the lack of strength on the left side. Basically, when I weight bear on the left, the right hip "hikes" up and over more to add the support to the left where strength is lacking. This constant compensation over the years, combined with my pelvic instability when I walk is the likely cause of the chronic pain and inflammantion of the back. Ligaments are stressed, loosened, and are unable to maintain the support needed by the pelvis.
Walking patterns are slowly getting better, yet feel so unnatural. I am no longer on the walker but will be most likely using a cane to add stability to the left side until the proper strength is achieved.
I will keep you posted when those imaging test reports come in.
As always, thanks to all you followers for your support and prayers!
Saturday, August 8, 2009
Sunday, August 2, 2009
This week is the last week for restrictions of the motion of the spine. After this week, I hope that my increasing these ROMs (range of motions) will continue to bring me back to a better place physically and mentally. As I write this, I realize this is exactly why I started this blog for the prospective future patient. Honesty in moments like these.
My left side of my low back is now showing similar signs as my right. This is interesting to me, as if the body is trying to balance itself out somehow. Interesting, yet still frustrating. Despite these pains, I am still able to keep my daily regimen of home therapy and my outpatient PT appointments. In these moments of pain and weakness, I "offer them up" as a good catholic boy should! :) I also realize that things can always be worse. There was a story on the front page of the paper a few days back about a CP man who is wheelchair-bound who has a friend who has no limbs. This friend is able to build and work construction and is building a new, accessible house for his friend. Yeah, that was a good reality-check for me for my whining and impatience.
I think the initial back pain issues will have to be put on the back burner and dealt with later in the year once the surgical process has been completed in terms of therapy and healing. I hope to investigate ideas like injection therapy, etc. in the future.
Sitting for any length is most difficult these days as the spine is in a weakened posture with gravity pushing on it as well as my SI (sacro-illiac joints) being out of alignment. Obviously, I cannot yet see a chiropractor for usual adjustments, however, my home PT team is working hard to help in this area. Again, it's all about patience.
Muscle strengthening and stretching is now the focus. The body truly is so complicated and unique. Most low back pain is hard to diagnose an exact cause due to so many variables in the body. However, the gluteus muscles, piriformis, and hamstrings are usually always in the equation. These are the muscle groups I most focus on. Also, core stability and strength contributes greatly, so I try to do my crunches as best I can. Also, the upper body has made its own adjustments through the years to compensate for the lower. Muscle stretching to help with upper body movements are needed as well, as I walked with a guarded gait for so long. Basically, the upper body also walks very stiff-like and I need to learn to keep the upper body relaxed while walking. Teaching the upper body to relax while in motion is a very foreign concept to CP patients, as we instinctively guard ourselves from falls, etc. which may cause further injury.
We'll see what this next week brings! I still have a little over a month before work begins. My goal is still possible! I still am not back at my own home yet as I do not feel ready. Also, I am still using the walker--not because I can't walk without, but I am more likely to fall into old, bad, incorrect walking pattern habits. Hopefully, I will try driving later this week!
Til next time!!
Monday, July 27, 2009
Monday, July 20, 2009
Til next time!
Tuesday, July 14, 2009
So, my feelings this point are a mixed bag of impatience, optimism, and seeing an opportunity to finally slow down for real in life. Being one that likes to always be on the go, to be busy with a full schedule of responsibilities, it is certainly a hard adjustment not doing much outside of exercise and resting. My back incision still has healing to do, and I have to realize that rest is best at this point.
My pre-conceived timeline of milestones based on other patient's experiences has to be thrown out the window at this point. My body is unique with its developmental strengths and weaknesses and comparing to others is not wise.
The most pain is felt in the middle of the night. My PT equates this to daily muscular training which in all honesty, I've never done, at least not correctly with muscle firing in correct sequences. So, sleep is bad, but pain meds are good. I usually only wake up once, take my pills and am good til morning. Be sure that I am not over-working. I have a morning routine of 20 mins, my daily therapy visit of one hour, then another evening routine of 20mins.
I am feeling stronger, but still using the walker. It is too easy at this point to let the body go back into old habits, which is counter-productive to this whole process. So, I purposely use the walker and purposely move slow to retrain the body through clear, precise feedback. It really is a game of re-wiring the system. It will be, as expected, a long process.
I appreciate all the comments and emails, I do read them all! It is not easy to respond personally to all of them, which is why this blog was created in the first place...to keep communication open to all those adoring fans in one central location.
So, in conclusion, although I do not see drastic changes, those who treat me do. They are who I must trust over my own impatient need to be self-ambulatory after two weeks of major spinal surgery. I am curious to compare these thoughts to those of next week.
Thanks for reading and for the thoughts, prayers, and good wishes!
Wednesday, July 8, 2009
Friday, July 3, 2009
Wednesday--discharged, flew home with my brother, arrived at mom's at 10:30 and went to sleep. I am on Percacet, Hydrocodone for pain which helps. The most pain is from the back incision site which runs three inches long and a quarter inch wide from L1 to L2 vertebral space.
Thursday--slept in till around 11. Feel tired and groggy from the meds. Starting to use the walker more efficiently, I refuse to sit in the wheelchair anymore, pointless and backwards in my mind. Took some laps around the house on the walker, took a nap. Went to first outpatient PT session at 5:30pm. PT folks glad to see me. Got baseline measurements and began focusing on walking properly with straighter, more fluid gait pattern and heel-toe contact synergystic movements. This is my homework for the weekend.
Generally, I tire easily, my head is groggy and my back pain is present always. There is a large degree of numbness in my legs which I am told will slowly dissipate over time.
All being said, I feel I am right on track, considering today is my 4th day out of bed, and I look forward to the sun coming out here in Buffalo so I can get outslide and walk. The limited space of my mom's living room will surely start to leave tred marks if I can't get out soon!! :)
I feel all the love and support of family, friends, even some new followers who I assume are potential SDR candidates.
Till next time...
Tuesday, June 30, 2009
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!
Monday, June 29, 2009
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.
Sunday, June 28, 2009
Friday, June 26, 2009
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.
Thursday, June 25, 2009
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!
Wednesday, June 24, 2009
Thursday, June 18, 2009
My next post will begin the day by day journey!!!
Sunday, June 7, 2009
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.
- 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.
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!
Thursday, June 4, 2009
FOR THE FORGOTTEN
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.