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Baclofen Pump: Miracle and/or Marvel? Yes!

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    Baclofen Pump: Miracle and/or Marvel? Yes!

    My name is Marco and I have been a member here for several years. I've never created a "Tell Us About Yourself" post until now. I'm glad that I waited until I had something valuable to say. First off, I'd like to say that Michelle & I realize that some of you, or a loved one, might be going through something horrific at the moment. We want to be sensitive to your needs and are not trying to cause additional damage. Should you need prayer or simply a hug, please let someone know! Second, I want you to know that Michelle & I are Christians. Even our normal speech is laced with Christian vernacular. We are not trying to offend you or your sensibilities. It's simply our life view and we hope you can respect that.

    You are probably thinking, "Enough of the disclaimers," let's get to it. Fine!

    The reason I am writing is to witness what God did for me and to celebrate my beloved bride. Again, I understand some of you don't believe in a miracle-working God and that is expected. You may prefer to consider it a scientific marvel, and that is both understandable and fine. In my opinion, the two terms miracle and marvel are not mutually exclusive.

    As for my wife, we were married a few weeks before I started having health problems. Roughly six months into the marriage, I was diagnosed with MS. That alone dashed a number of our hopes and dreams. I then had a series of flare ups almost every summer. These included everything from extreme back spasms to going partially blind. Though we treated aggressively with medication and physical therapy, it was obvious we were losing ground. Shortly, thereafter I was declared permanently disabled without the ability to reliably walk, talk, see, lift, type, or even think. As the physical and emotional deficits added up, we leaned on our faith, and each other, for comfort.

    The flare in August 2012, was the worst and left me in the hospital. When I arrived at the ER they thought I had a stroke. I was unable to use my right side and my lower body. Days later when I was released I could barely lift a loaf of bread. I did PT 2-3x per week for 2 years, and could then lift about 8 lbs. By the close of 2012, I was on daily morphine and Cymbalta for normal pain and Norco for breakthrough pain. Even with these pain medications on board, I was still in the 6-7 out of 10 pain scale most days. For me, the constant pain was similar to or greater than a migraine. Along with the pain was severe heat intolerance. Each year, the summer months made life harder for me. Even while wearing an ice vest, the daily heat strain was simply too much. Michelle and I have discussed moving each of the past three years. It becomes tough for us to consider leaving our church, home and all of you friends. More on this later.

    Fast forward to this year, and the pain got so unbearable that I visited my pain management doctor and asked him to shoot my leg with Botox. The doctor declined, but referred me to a Physical Medicine & Rehab (PM&R) Doctor for evaluation. The PM&R performed a comprehensive examination of my physical, not neurological, body. Quickly, he ascertained that the bulk of my problems were spasticity related. We discussed oral medications, Botox, Baclofen pumps and other options. The doctor listened to and answered all of my questions and then left the decision up to me. His recommendation was the Baclofen pump route, and especially taking the trial dose prior to making a decision. He explained that the pump should reduce my overall body spasticity, decreasing pain associated with spasticity and improving my overall Quality of Life (QoL). My wife and I went to lunch and talked about our options. We quickly, but skeptically, decided to proceed with the Baclofen trial.

    Below I have included information about PM&R doctors.
    • PM&R Fact Sheet: http://www.aapmr.org/patients/aboutpmr/pages/faqs.aspx
    • PM&R Doctor Locator: http://www.aapmr.org/patients/findph...s/default.aspx
    • Website for my personal PM&R Doctor: http://www.PMNInstitute.com

    Note: It is common to call these pumps ‘Baclofen’ pumps, but they are more correctly called an Intrathecal Therapy Pump (ITP). Baclofen is simply the medicine commonly used in conjunction with these pumps for severe spasticity.

    A few weeks later, the Baclofen trial was conducted. The trial simulates a single Baclofen pump by dispensing the medication directly into the intrathecal space. The 50 microgram Baclofen dose is small compared to the actual dose required by the individual (for example, I needed 300 micrograms); the trial results were not stellar. Further complicating the trial was how my body responded to the decrease in spasticity. My brain started getting a lot of feedback as my body was waking up for the first time in years. The doctor actually heard my wife and me talking about the lackluster results and believed we would not move forward. He finally asked,
    Originally posted by PM&R Doctor
    "Are you going to get the pump?
    My response was a simple, but resounding "YES!" After the trial, the spasticity returned and the pain came back with a vengeance. This was a further indication that the initial dose had worked. It was time to move on with the ITP pump and achieve all the possible benefit.

    End of Summary
    Until now, I have tried to summarize the background events. It's still hard to summarize 6 years of living with MS into a few paragraphs. From here on out, the detail level of the experience will increase. During my rehab stay, I often sent out emails with amazing updates. I am going to leave these emails as in tact as possible so you can get a first hand idea of the blessings the Baclofen pump has caused.

    On September 24, I returned to my pain management Doctor and discussed my PM&R conversation. As I told him the possibility, he got all misty eyed and said, “Then I did do the right thing,” (by referring me to another physician). He was so thrilled that I might actually get help. The other doctor in his office had just lost his mother to MS. I can’t wait to see him and give him a hug.

    On September 29, 2014, I underwent the pre-test for the ITP surgery. They perform a lumbar puncture (LP, or spinal tap) and then drop one dose of the medicine to gauge any changes. The doctor then comes in periodically to check any perceived or measured difference. My wife and I were debating it and the doctor asked, “Are you actually going to do this?” I said, “of course, we’re just somewhat skeptical.” The doctor responded that the trial dose is the minimum of 50 micrograms or 0.050 milligrams, and after the pump was inserted, he would increase the dose and get a better response.

    On October 27, 2014 I went to meet the surgeon for the pre-op meeting. Oh boy, talk about an odd visit. My wife and I would almost never freak out about a neurosurgeon, but this guy is an odd duck. Despite his idiosyncrasies, this is one of the most reputable neurosurgeons in the area. We stayed with him, and we’re glad we did.

    On November 7, 2014 I underwent a 2.5 hour surgery to install the ITP pump. The primary goal of the surgery was to reduce the spasticity-induced leg pain. Spasticity is simply muscle tightness or stiffness caused by muscle spasms or involuntary muscle contractions. The surgery started late, but immediately afterwards the miracle began. I woke up with less leg pain and things just got better from there. We had a number of complications the following few days that were NOT pump related. After the complications were worked through I was transferred to the rehab hospital 4 days later than expected.

    I arrived to the rehab hospital late on November 13th and was excited and overwhelmed by my special opportunity to improve my overall wellness.

    November 14, 2014
    Today was my first full day of rehab and it primarily consisted of evaluations by physical, occupational, psychological and speech therapists. It was quickly determined that extreme spasticity has been a huge hindrance for me, impacting not only my mobility and pain level, but also my ability to speak and perform most of life’s daily activities. This further validated the decision for surgery, since our objective was to reduce or rid the spasticity in my body. Over the next few days, they will continue to fine-tune the medication dosing of the pump. That means it is possible to even get more benefit than what has already been realized (being nearly leg pain free). They have already added an additional pain therapy to my post-surgical recovery and reduced or eliminated nearly a half-dozen medications.

    Two of the comments received from early visitors have been,
    Originally posted by Friend
    “This is like a miracle”
    and
    Originally posted by Friend
    “You look like the ‘old’ Marco.”
    Needless to say, Michelle and I are thrilled with the preliminary surgery results and with rehab. We realize we are blessed and maintain good hope for the future. Complete surgery recovery will not occur until early next year when we will have a better understanding of the final impact of the pump. Even more thrilling than the pump is the amount of love and compassion our friends and families have shown. We will be forever grateful for the outpouring of support we have received.

    I am not sure how long my rehab stay will be, but I'm sure I will be home shortly to rejoin Michelle and resume my family duties. During this time, please keep my beloved in your prayers. Thankfully a few people have volunteered to provide her some assistance until my homecoming. If you too would like to help Michelle, please contact her directly, or I can put you together. A normal day at rehab involves at least 3 hours of one-on-one therapy. Tomorrow, my abbreviated schedule only includes 1 hour of physical and 1 hour of occupational therapy.

    I’m starting to realize just how jaded I have become about healthcare, especially VA healthcare. I am grateful that virtually all of my other doctors are passionate about their profession and genuinely care about their patients. I am blessed to be in a place where true rehabilitative medicine is practiced. Before this experience, rehab always had a negative connotation, but now it’s one of the most beautiful words I know. The physical healing I have experienced is one earthly example of the spiritual healing one can only get from Christ. Even now, my life is many times better than it was prior to surgery. Just days after surgery my walking, talking and thinking are all considerably better. There is much rehab that is required, but this has already qualified as a miracle for our family.

    Michelle (wifey) likens this experience to a scripture in Joel.
    • I will repay you for the years the locusts have eaten-- the great locust and the young locust, the other locusts and the locust swarm -- my great army that I sent among you. Joel 2:25, New International Version
    I liken this experience to a more familiar passage in John.
    • The thief comes only to steal and kill and destroy. I came that they may have life and have it abundantly. John 10:10, English Standard Version.

    Originally posted by One hospital visitor put it this way
    “You are the modern day version of Jesus healing the paralytic”
    as documented in Matthew 9:1-8 and Mark 2:1-12.

    My PM&R Doctor, Joe Urquidez, left a few moments ago. He just returned from San Diego, where he gave multiple presentations about the therapy I had. After a physical examination, he ripped the incision covering off my backside and said,
    Originally posted by PM&R Doctor
    “Everything looks proper and promising.”
    He made a small dose adjustment and went home to his wife. I cannot wait to get home to my own wife, but first, I have more rehab to complete.

    November 15, 2014
    For nearly 20 years I worked with computers and saw them revolutionize everything from department store distribution centers to patent portals for medical offices. E-mail has become so efficient that many of you expect delivery across the nation, even while on the phone long distance. Needless to say, in the past 24 hours I have been reminded of the power of computers and the Internet.

    At this rehab facility, therapy occurs six days a week. Monday through Friday I receive a minimum of 3 hours of one-on-one training and potentially one or more group training sessions. Since the medication pump catheter is physically inserted into the spinal column, I am housed with the other spinal column patients. I might be the most mobile of the current rehab patients. So while it’s easy to see my blessings, it’s also humbling to see the struggles of so many others. Fortunately, all of us are at an excellent facility for our various ailments.

    Today, the focus of therapy was physical and occupational therapy. The first task was improving my gait and walking endurance. Since my bad MS flare in August 2012, my world has continuously gotten smaller. On average days, my walking is generally limited to about 15 feet before my gait begins to degrade and I become a fall risk. Unfortunately, I have six falls over the past 15 months, but fortunately, I did not break any bones. Theses falls and lack of walking endurance were the driving force behind me getting a wheelchair. Inside the home most, of my walking closely adhered to the 15 foot limitation. Outside the home, I was normally dropped off at the location entrance or was required to use a wheelchair.

    It was believed that my mobility was limited by a combination of neuropathy, nerve damage and spasticity. Recently, my Pain Management & Rehab (PM&R) doctor believed that an increasing amount of my mobility issues was spasticity related. Approximately one month ago we did a lumbar puncture procedure where they administered a single medication dose to my spinal column. The results were obvious and sufficient to warrant the full pump surgery.

    Yesterday, one week after my surgery, I was able to walk over 70 feet as part of my physical evaluation. The evaluation was completed using a walker, but clearly showed the potential mobility improvement as a result of the pump. This morning the therapy team began to work on improving my gait. A few feet into my walk, the therapist made a technique correction, asking me to straighten my knees and attempt to bounce less. I make the corrected change, and after a few more attempts, found myself well short of the 60 foot marker. Later today, during my second hour of therapy the walker was customized for my body to help me stand more erect and relocate my hips directly over my legs. A few moments later, my gait had substantially improved over not only last week, but also over yesterday. We completed gait training by traversing a minimized set of stairs before switching to the wheelchair for arm strengthening. So while the distance traveled was shorter, I was able to improve the efficiency of my gait and begin stairs training.

    I have now been using a wheelchair for approximately 18 months. Until rehab, I had received limited wheelchair user-training. Today, I learned the importance of wheelchair safety and strategies to improve my wheelchair transfers. Previously, when confronted with a steep decline I would often push hard into the decline and elevate my hands and arms, mimicking a roller coaster ride. Having been disabled for over two years, rushing down terrain declines in my wheelchair has been one of the few “freeing” moments I have had. My wife and other onlookers may soon be comforted by my restraint on these declines. The risks are simply not worth the few seconds of perceived “shredding” reward. Historically, my arms have seldom been taxed in the wheelchair, but after today’s training my arms were significantly fatigued.

    My surgical recovery continues with the primary incision site healing well. The only problem is the secondary surgical area is inflamed and causing significant pain and discomfort. In addition to the Lidocaine patch and post-surgical pain relievers, heat and cold therapy have been added in attempt to reduce my level of pain. Amazingly, within a few minutes of discussing a therapy change, it is often fully implemented. After discussing the benefits of alternating hot and cold therapy treatments, both options were quickly located in my room. Hopefully, the thermal combination will pay dividends and my pain level will be better managed before therapy resumes on Monday.

    Tomorrow, there will be no scheduled therapy and that will allow me time to recuperate and spend the day focused on spiritual matters and visitors. One of the emails that recently came
    Originally posted by Friend
    “Your message gave me goose bumps! I am so very grateful that you have seen the recovery you already have. My prayers will be that you will see continued recovery through the coming months. I will come to see you soon.”
    . As you can see, Michelle and I remain indebted to you for your prayers and support. Michelle and I have are also thanking God and praying for each of you. Until my next update, I hope you and yours find blessings to recount.

    Overjoyed Sister
    My sister called me about 5 minutes ago. Within moments she said,
    Originally posted by Sister
    "I'm really having a hard time. I haven't heard you sound like this in years." She then handed her husband the phone and said, "Talk to him. Talk to him."
    After a few minutes, she placed the phone in speaker mode. She simply wanted to hear her brother's voice sounding NORMAL. I've had a Stephen Minister for over a year. When he came to visit me in rehab he said,
    Originally posted by Stephen Minister
    "You seem BIGGER!"
    He then sat and cried for a long time at the obvious changes.

    Many of you have never met me or not seen me in years, but just two weeks ago I was a shell of my former self. I have been using a wheelchair for almost 2 years and could walk just over a dozen feet. I cannot remember the last time I considered jumping, running or even dancing with my beautiful wife. My daily pain level was a 6-7 even while on heavy pain medications. I have not driven in over 2 years and even while not driving, my "startle response" was overly sensitive. My speech was affected, and even communicating for an hour would often tire me out for several more hours. A simply email could take 1-4 hours to create, and my typing speed had been reduced by over 90 percent. Two weeks ago this very post may have taken me two full weeks to complete with many more errors. Showering was enough to fatigue me for several hours. I even regularly missed church strictly because of fatigue. My persona had been diminished by disease symptoms, extreme spasticity, medication side effects, and chronic, debilitating pain. Each day my world had gotten smaller and smaller.

    There is just something about miracles that causes others to take notice (in disbelief, marvel, amazement, etc) and the recipient to tell the story. During surgery, Jesus was walking by, and I reached out and grabbed the hem of his garment. I am still tethered to my little rehab bed. I'm not even allowed to get up without an attendant (safety protocol), but my world is expanding moment by moment.

    Today, the rehab staff had a patient meeting. Without reservation or objection, the entire medical and therapy staff decided I was ready to go home!!! I won’t actually be released until sometime Wednesday, but the release process has begun. I would like to thank all of you that have prayed, loved and supported us for the past several years (and days). I also want to honor my wife that has spent many nights in tears over my condition. She has prayed more times for me than I have for myself. When many people would have left, my wife didn't quit or leave – she simply held me closer. We had only been married for 6 months when I was diagnosed. A few short months later I became ‘permanently disabled’ and worse. The type of love my wife has shown deserves to be respected and applauded. Michelle has been carrying all this for years, not just her challenges, but carrying mine as well. She not only deserves my praise, but she has earned it.

    We hope to see/hear from y’all in the near future. Soon, I might be driving again for the first time in years. What is clearly obvious is this is only the start of something much bigger than us. Unlike last week when I was struggling, I might have to get off FB now because I am completely overwhelmed.

    During therapy, the OT/PT and I ran into a Vietnam-era Marine. He had tears in his eyes as I thanked him for his service.
    Originally posted by Marine said
    "Man, my wife is coming home after 5 months."
    We instantly had a connection, and I could only imagine the horror of 5 months in the rehab hospital. That is not saying anything bad about rehab; it's just recognition of their challenge. The therapist and I made it outside for productive training. Outside, the marine drove by and was fist-pumping and honking his horn in jubilation for his situation, and encouragement in mine. That is just another example of the miracles that happen to everyday people in rehab. Great challenges often lead to great results. Thankfully, a place like St. David's Rehab Hospital - Central exists. I am not big for product endorsements, but I am a living testament to the level of health care and support of this facility.

    My wife will be here in a few minutes and we are both thrilled. I will be going home around lunch tomorrow to begin the rest of my life. While challenges remain, there is no doubt that my wife is awesome enough, and our friends & family are great enough to make it through. The stats would say I can expect another 30 flare ups in my lifetime, 15 of which should statistically result in permanent injury. Know with the knowledge gleaned here, and my medication pump, I am ready to start defying those odds.

    So often the single limiting a factor a patient has or doesn't have is hope. One of my favorite versus has always been Hebrews 11, “Now faith is confidence in what we hope for and assurance about what we do not see." No matter what the struggle or hardship, you can choose to have hope or despair. Even confronting, death you can have good hope for something greater and better. So take a dose of hope from God, science, or whatever, but understand with great tests come great testimonies.

    I would encourage you to love on your loved ones. My wife was the best example of this. When confronted with MS she held me closer. The same happened with PTSD, Fibromyalgia, and every other diagnosis -- she simply held me closer, maintained hope and prayed for me. We have always thanked God for our blessings and now our cup is running over!

    I want to thank everyone for their love, encouragement and support. Even Internet/Facebook connections have told me they were praying for me. One sent me the following comment:

    Originally posted by Friend
    "Marco, I know we have never met except through a couple of Facebook sites. Since the first time we had chatted, I knew you were an intelligent and strong willed person. One day I would love to meet you in person. You are just up the road from me. Just wanted to let you know since my suicide attempt last year, I have become a stronger individual. Also my faith in the good Lord has kept me going. When I went to church this past Sunday, I went up to the altar, and asked GOD to give you the strength needed to pull through this and make a speedy recovery. I told him that you were a good man. So I'm so glad to hear this news. I hope all goes well and we get to meet one day, either up there in Austin, or down here in San Antonio. Stay strong and God bless you, brother, and your family."
    I hope to hear from each one of you in the near future. Until then, be blessed and remember you are NEVER ALONE!


    Baclofen Pump Humor (Dark?)

    I recently had a Baclofen pump installed with miraculous results. Just days after surgery I am doing wonderfully, but there is a medication 'fine-tuning' process that takes place. This process requires some level of precision; not enough medication leaves spasticity in the body, too much medication, and the person can resemble a jelly fish.

    My wonderful doctor, Joe Urquidez, stopped by on a Sunday evening to check on me in post-surgical rehab and made a small increase in the Baclofen dosage. And YES! He does look like Vin Diesel. About 2 hours later, I was unable to urinate. My legs are crossed, my eyes yellow, I am restricted to my bed for safety reasons, but I was begging Sir Isaac Newton's gravity to help me go. Nothing!!!


    I called the rehab nurse and she asked if standing would help. Moments later I was standing in the bathroom praying I could go. We turned on the sink water for a little motivation. Nothing!!! The rehab nurse then scanned by bladder and determined I was only 2/3rd full and planned a catheter for 5:30 am.

    I suspected the Baclofen increase relaxed my bladder too much to go. I lay down to sleep but could not, so I decided to start this blog entry. Considering the past several years, this problem wasn't overly significant, not at all scary, and in fact, it was rather humorous. So while I was laughing hard at the situation, my bladder decided it was ready to go.

    Fortunately, I had not left a frantic message to the doctor about my inability to urinate or my lack of patience.

    For the past few years I have been suffering with extreme spasticity related to Multiple Sclerosis. The spasticity was so bad it affected my walking, talking and many other basic body functions. On November 7th, I had a Baclofen pump surgically implanted to treat the spasticity. There were post-surgical complications that were not pump related, but it made the recovery a bit harder and longer. My sister had been calling and visiting me at the hospital, but had not seen me in a day or so.

    Thus far, we knew the pump had reduced my spasticity and chronic pain and had provided some improvement to both my walking and talking. Earlier tonight, the wonderful Dr. Joe Urquidez increased the dosage of my Baclofen pump with the intent to further improve my speech. Dr. Urquidez did caution me that due to the catheter location and the pump specifics, it may not be realistic to target just the speech for improvement. Note: My catheter was already at T4 and any higher up could cause serious health problems. Dr. Urquidez then used a handheld computer to modify the medication options before using radio waves to upload the configuration. The new configuration would burst minute Baclofen doses and increase the daily dose by 15 mcg (0.15 milligrams). Seeing the process in action, it would totally remind you of "Bones" McCoy from Star Trek using a medical Tricorder.

    There is just something about miracles that causes others to take notice (in disbelief) and the recipient to tell the story. During surgery, Jesus was walking by, and I reached out and grabbed the hem of his garment. I am still tethered to my little rehab bed. I'm not even allowed to get up without an attendant (safety protocol), but my world is expanding moment by moment, and my loving sister is joyful!

    Then I have my beloved, beautiful, absolutely perfect, flawless my wife, Michelle. Michelle also stood by me for six long years before a miracle happened to change our life. I realize she did not have to stand by me, but she did because she understands the power of love. This is the Bible verse that has comforted her over many long nights of suffering. My wife is a woman of faith, and she absolutely, positively would not be moved. So many nights I lay in bed broken and hurting, and she would pray for and over me. Absolutely amazing! There has never been another woman intended for me, but it took forty years for God to bring us together. It's quite similar to the Exodus, but I have been afforded the opportunity to enter my promised land with my incredible wife.

    November 17, 2014

    On Tuesday, November 17, 2014, the rehab staff had a patient meeting. Without reservation or objection, the entire medical and therapy staff decided I was ready to go home!!! I won’t actually be released until sometime Wednesday, but the release process has begun.

    My real reason for wanting to gather is to thank all of you that have prayed, loved and supported us for the past several years and days. I also want to honor my wife that has spent many nights in tears over my condition. She has prayed more times for me than I have for myself. When many people would have left, my wife didn't quit or leave – she simply held me closer. We had only been married for 6 months when I was diagnosed. A few short months later I became ‘permanently disabled’ and worse. The type of love my wife has shown deserves to be respected and applauded. Michelle has been carrying all this for years, not just her challenges, but carrying mine as well. She not only deserves a party, but she has earned it.
    • For those people that have seen me struggle, come expecting a living, walking, talking miracle.
    • For those that have not seen me recently, come watch the faces drop of those that have.
    Many of you have been reading about the miracle my ITP-Baclofen Pump has caused. ITP stands for Intrathecal Pumps, and Baclofen is the medicine that I am getting. The pump works by stopping pain signals that travel through the spinal cord. ITPs deliver medication directly to pain receptors located in the spinal cord. Because the medication is delivered directly to the need, much smaller doses are needed when compared to oral medications, including oral Baclofen,

    ITPs often work when other pain control and/or spasticity methods have failed. I definitely have been transformed inside and out because of it. Within days of the implant, my entire world has changed. Every little aspect of my life has been changed for the better.

    Note: For maximum effectiveness, the prospective patient needs to have enough muscle tone for activities. If muscles have significantly atrophied, then ITP may have less remarkable results. As always, with any treatment there are risks, and every patient will have an individual result. The result will basically come down to a few factors: how much muscle mass exists, what percentage of your problem(s) are caused by spasticity, and you individual responsiveness.

    For me:
    • I am walking better, stronger, faster, and longer.
    • I have more energy and can do things previously that would put me out for hours or days.
    • I am talking better with more control, no pain and fewer facial flaws.
    • I am physically stronger going from a 2/5 to a 4/5 on the hand strength test.
    • In one week my lung capacity has nearly doubled (no training).
    • I am thinking more clearly ... I passed a number of neurological examinations that I had previously failed.
    • I feel better - I came in on morphine and may soon be off of the narcotics and nearly pain free.
    • I can feel my toes. For so long my feet would slap the ground when walking. I could not feel or really use my toes when walking. Now, my gait is near perfect, and I can feel all my toes.
    • I can feel my hands. Before my hands would touch things like I was wearing mittens or gloves. I had no fine-touch sensation, so I could not run my hand over various textures and determine a difference.
    • I could only feel part of my bladder so I could not really tell when it was full until it was virtually too late. Now, I feel my bladder when it is full or not, so it's easier to get to the bathroom in time.
    I woke up freezing the first night I was home. I’ve been hot two years, similar to having a 2-year hot flash. Then my MS medication also causes flushing and it’s been a hot time. I’ve been so uncomfortable we’ve been facing the decision to moving to a cooler climb. Only time will tell, but it currently appears we will not be moving anywhere. Now, we may not have to leave our family, friends, church, neighborhood, etc.• Many, many more changes have happened, and it has been a miracle therapy for me.

    Recreating the Miracle
    As you can see, the Baclofen pump has revolutionized my life. The obvious question now becomes who else can benefit from this technology?

    Q. Who is a candidate for the Baclofen/ITP Pump?

    Not all types of pain respond to ITP therapy, because the pain receptors are different for different types of pain. Nociceptive pain transmission is interrupted at the spinal cord, and pain relief is experienced. Neuropathic pain, peripheral or central nervous system pain is generally treated better with topical or local anesthetics. Opioids are often more effective at treating pain from tissue damage.

    Where ITPs kick butt (sorry for the technical term) is spasmodic pain. Spasmodic pain is often caused by brain or spinal cord problems commonly associated with MS, brain/spinal cord injury, cerebral palsy and/or stroke. Because 99% of my symptoms were caused by spasmodic pain, my results were stellar.
    Spasmodic pain can often be compared to muscle cramps where you have contractions caused by excessive muscle tone.

    Q. Are you a doctor or medical professional?
    A. I am not a doctor, or qualified medical profession. I am simply a pump patient that had miraculous results from a pump implant. Because my results were so amazing I wanted to share my good news with other patients.

    Q. How good were my results?
    A. The word "miracle" has come up dozens of times in just a few days. That's a hint at the awesomeness of my pump. I hope your results would be as great as mine, but each patient has individualized results from any treatment.

    Q. OK, so you're not a medical professional. Where can I get more reliable information?
    A. Perfect question. Please understand all medical information should be granted from a qualified source. A qualified source would be the manufacturer, http://www.medtronic.com/patients/se...icity/therapy/, or your physician.

    Q. How do I know what kind of pain I have?
    A. Have a sit down talk with your neurologist, primary doctor, pain management, physical medicine doctor. Don't take silence or avoidance as an answer. You absolutely need to know the root cause(s) of you pain so you can have the best treatment plan.

    Q. I have limited pain is this the therapy for me?
    A. Only you can make that decision, but getting an ITP is a serious medical procedure. You are somewhat gutted open like a fish and a metal pump is placed in your abdomen. Tubes are then run from your pump around your back and into your spine where the medicine is released. If you thought that last sentence was horrific, your pain level may not be sufficient to warrant a pump.
    If your pain is so out of control you're ready to try nearly anything for relief - you're probably the candidate properly matched for this procedure. For me, the actual procedure was not that horrific, but I'd rather take a pill 4-5/day than have the pump if it provided adequate pain relief.

    Q. My doctor's clueless, now what?
    A. The doctor specialty that seemed to help me the most is a Physical Medicine & Rehab (PM&R) Doctor. Call your insurance provider and see if they have a PM&R physician in your network. I am not aware of a national phone number or clearing house to call (I should see if 1-800-GoPumps is available).

    Q. How do you know if the pump will work?
    A. This is a question for your doctor. You will need an examination to determine if you are a likely candidate. If you get a green light, then they will have you conduct a test. During the test, they will give you one dose of Baclofen during a lumbar puncture procedure. Based on the results of this trial, a decision will need to be made to proceed or not to proceed to the surgical step. For me, from start to finish was approximately 10 weeks, with the last 2 weeks being in the hospital.

    Q. How long were you in the hospital? How long is the recovery process?
    A. After the procedure, I stayed roughly a week in the regular hospital recovering from the procedure before being transferred to a rehab hospital. The recovery part is difficult to state because like other items, it will depend on your rate of recovery and so many other variables. I do know of patients that did not have hospital stays but had the procedure outpatient. Others opted to forego the rehab hospital and simply go home or return to work. Fortunately, I was able to go to a rehab facility that was also incredible in every way. My total hospital time was 7 days in the regular hospital and 6 days in rehab. If not for complications, my regular hospital stay would have been about 2 days before the rehab portion began.

    Q. What are the risk factors?
    A. From information freely available on the Internet, the following side effects were noted: nausea & vomiting, constipation, fatigue, weakness, difficulty breathing, flushing and other paresthesias (funky brain feedback). More serious complications are hardware malfunction, bleeding, infection,

    Q. Does the pump run out of medicine? How long does it last?
    A. The lifetime of the pump is roughly 7-10 years. After that time, a second procedure is required to remove the old pump and replace it. Medication refills are also required based on your dosing. For example, your pump holds only so much medicine. You take that total medication and divide it by your daily dose, and then you need a refill. Most people get their pumps refilled from 1-3 times/year.

    Q. Can you actually see the pump?
    A. Nope, all the components are placed under the skin, but you may see a bulge under the skin. The pump comes in two sizes (20 & 40 mg), but are very close to the same physical size. The pump may be more noticeable on thinner people because they have less room beneath the skin. The pump, however, is made of titanium so you may set off metal detectors, alarms, etc. You will get a medical card to carry explaining that you are a pump recipient for security-related matters.
    The company actually maintains a database with the pump serial numbers and patient information.

    Q. How much did the surgery cost?
    A. I'm still in the hospital so I have no real clue. Again, you would need to talk to your insurance company and/or doctor about it. Fortunately, with my insurance, a copay was needed, but not the cost of the procedure.

    Q. Would I do it again?
    A. Duh!?! For me, that is like asking a blind person if they want to see. The answer is definitely a "YES" without a question. I had doubts even the day of surgery, but this was one of the best decisions my wife and I ever made.

    If you have any other questions, please let me know, and I will do my best. If this information excites you, then that is great. Just don't get all out of control. Go see your doctor and get their opinions and move forward as instructed.

    The Baclofen ITP is not a cure, but it may be able to reduce your spasticity in miraculous and marvelous ways. I would encourage any MS patient with remaining muscle tone and significant spasticity to find a PM&R doctor, or talk to your neurologist, about the potential to receive an ITP (Baclofen) pump.
    My great friend and former Pastor, John, once told me the criteria for a miracle and it is summarized below:
    1. The recipient of the miracle cannot claim any special part in it, as the result was clearly from an external source (God).
    2. The recipient cannot stop talking about it via mouth or actions. In other words, the person retells the story, or their new life is a testament to the miracle (e.g. Saul of Tarsus, woman with the issue of blood, paralytic near the Gate called Beautiful).
    3. Onlookers are astonished and give glory to God.
    4. Non-believers start believing that "anything is possible," maybe even the presence of God. Believers are encouraged as they see the Hand of God and have more hope for their own situations.

    My experience matches all of these criteria and so much more. If you ever have the opportunity, please ask my wife some questions. She's not only a Proverbs 31 type of woman, but she can retell any story so much better than I can. Let me close with this passage of scripture and commentary: “And as you go, preach, saying, 'The kingdom of heaven is at hand.' Heal the sick, raise the dead, cleanse the lepers, cast out demons. Freely you received, freely give. Do not acquire gold, or silver, or copper for your money belts.” Matthew 10:7-9, New International Version.

    I have received zero dollars from anyone for this story. Heck, the Baclofen company doesn't know I exist, and the Medtronic company only has my name in a database next to the serial number of my pump. Dr. Urquidez has no idea this post exists, and the St. David's Rehab hospital has already filled room #413, and is already helping a new patient recover from their ailments.

    This is the story of what can happen when you take the right solution and join it to the correct problem. The Baclofen pump may not be your answer to prayers, but don't give up. Scientists are working daily, and God has already apportioned the ideal situation for you. Unfortunately, the timing completely belongs to the Master.
    So until you find the therapy that makes things better for you, keep up the good fight, and know that some crazy Texan and his beautiful wife are praying for you and yours.

    In Christ, Love, Peace & Hope,
    Marco


    Last minute update: My PT arrived at 07:45 am, and began her evaluation. She stated my strength has significantly improved in every area. So while she found some deficits and areas to improve she basically said, I needed a more intense fitness program than home health. I will be enrolling in Neuro-PT more than 2 months ahead of schedule, and with fewer things to work on that previously thought. So my wellness goals for next year are: 1) taper off as may medications as possible, 2) become 100% community ambulatory, 3) pass a driving test, so I can meet many of you for lunch or whatever!!!

    #2
    Thank you for telling your story Marco. I have an appt to see the neurosurgeon on Dec 4. I had the ITP trial on Nov 11. It helped me walk much better. It seemed like I stood a little taller.

    I'm pretty nervous about the surgery and recovery. Your post definitely helps. I have had severe spasticity for years. I am hoping the pump helps me. I am hearing many good things about it. Thanks again!

    Comment


      #3
      Wow

      That was a beautiful post Marco. It was so heartening to read. This disease takes so much from us, but you are getting some of your own back! Congratulations!
      You can't stop washing your feet just because you're afraid you'll fall in the shower.

      Comment


        #4
        Originally posted by Marco
        Note: It is common to call these pumps ‘Baclofen’ pumps, but they are more correctly called an Intrathecal Therapy Pump (ITP). Baclofen is simply the medicine commonly used in conjunction with these pumps for severe spasticity.
        These pumps are also used for powerful pain medications, like Morphine. Many Pain Management Specialists are also familiar with them, but not very familiar with it's use for the treatment of spasticity.

        I recently had a Baclofen pump installed with miraculous results. Just days after surgery I am doing wonderfully, but there is a medication 'fine-tuning' process that takes place. This process urequires some level of precision; not enough medication leaves spasticity in the body, too much medication, and the person can resemble a jelly fish.

        For me:
        • I am walking better, stronger, faster, and longer.
        • I have more energy and can do things previously that would put me out fhor hours or days.
        • I am talking better with more control, no pain and fewer facial flaws.
        • I am physically stronger going from a 2/5 to a 4/5 on the hand strength test.
        • In one week my lung capacity has nearly doubled (no training).
        • I am thinking more clearly ... I passed a number of neurological examinations that I had previously failed.
        • I feel better - I came in on morphine and may soon be off of the narcotics and nearly pain free.
        • I can feel my toes. For so long my feet would slap the ground when walking. I could not feel or really use my toes when walking. Now, my gait is near perfect, and I can feel all my toes.
        • I can feel my hands. Before my hands would touch things like I was wearing mittens or gloves. I had no fine-touch sensation, so I could not run my hand over various textures and determine a difference.
        • I could only feel part of my bladder so I could not really tell when it was full until it was virtually too late. Now, I feel my bladder when it is full or not, so it's easier to get to the bathroom in time.
        I woke up freezing the first night I was home. I’ve been hot two years, similar to having a 2-year hot flash. Then my MS medication also causes flushing and it’s been a hot time. I’ve been so uncomfortable we’ve been facing the decision to moving to a cooler climb. Only time will tell, but it currently appears we will not be moving anywhere. Now, we may not have to leave our family, friends, church, neighborhood, etc.• Many, many more changes have happened, and it has been a miracle therapy for me.
        Oh Marco, that's FANTASTIC!!! I'm glad to hear you decided to join the ranks of fellow "pumpsters" and have had such incredible results!

        I'm also glad you had a positive experience with inpatient rehab, too. My initial pump surgery was day surgery. It was not the best experience, especially after being told I was being discharged and to get dressed so I could leave shortly after waking up! My recommendation to everyone is to discuss the possibility inpatient rehab with your surgeon before the surgery. Surgeons implant these pumps for other conditions as well, not just MS. But, not everyone will need it, BobOP, our veteran "pumpster, " went horseback riding (not recommended!), shortly after one of his surgeries.

        Note: For maximum effectiveness, the prospective patient needs to have enough muscle tone for activities. If muscles have significantly atrophied, then ITP may have less remarkable results. As always, with any treatment there are risks, and every patient will have an individual result. The result will basically come down to a few factors: how much muscle mass exists, what percentage of your problem(s) are caused by spasticity, and you individual responsiveness.
        rdmc shared this link in another thread called, "Too little, too late." http://m.msj.sagepub.com/content/ear...95056.full.pdf

        Q. Does the pump run out of medicine? How long does it last?
        A. The lifetime of the pump is roughly 7-10 years. After that time, a second procedure is required to remove the old pump and replace it. Medication refills are also required based on your dosing. For example, your pump holds only so much medicine. You take that total medication and divide it by your daily dose, and then you need a refill. Most people get their pumps refilled from 1-3 times/year.
        Please let me share my information about the lifetime of the pump and refills. The maximum battery life is 7 years. It is also recommended the pump is replaced 6 months prior to the automatic end of service date, which is based on individual usage. http://www.medtronic.com/patients/se...a-replacement/

        I had to replace my pump earlier than I anticipated this year. I thought I could wait until closer to my ERI (estimated replacement interval) date, but my doctor had other plans. The pumps automatically shut down 90 days after that date. He usually replaces them 6 months before then (=9 months before it's actual end of service), and told me it was because the malfunction rates increase the closer a pump gets to the ERI date. (But, I still managed to prolong the surgery to 3 months before mine's ERI date = manufactures recommendation). http://www.medtronic.com/patients/se...a-replacement/

        It is very important the refill date is calculated correctly to avoid any possibility of withdrawal.

        Both my previous and current doctor refuse to allow me extend my refills dates beyond 90 days. I had really hoped I would be able to extend them further, especially after being given the more concentrated version when my baclofen pump was replaced earlier this year. (According to my printout, I should now be able to go extend out my refills almost 5 months). This isn't the case for everyone, but unfortunately for me, is what I'm told. They withdraw whatever is left at 90 days, and then refill it with new medication.

        I was able to wait until closer to the refill date on my printout the first time, because of an unanticipated, extended rehab stay after my surgery. Having said that, I didn't notice any difference with the effectiveness of the medication. But, I'm still not allowed to extend my refills beyond 90 days.

        So often the single limiting a factor a patient has or doesn't have is hope.

        So take a dose of hope from God, science, or whatever, but understand with great tests come great testimonies.
        I'm glad you have a renewed sense of hope, and that you inspire others to have it as well. Good luck with your new pump, Marco, and I hope you keep experiencing more miraculous benefits from it! Maybe your calling now is to be an ambassador for the baclofen pump? (And share a hug from us with your wonderful, supportive wife, Michelle, too)
        Kimba

        “When you change the way you look at things, the things you look at change.” ― Max Planck

        Comment


          #5
          Originally posted by ijustcallit View Post
          Thank you for telling your story Marco. I have an appt to see the neurosurgeon on Dec 4. I had the ITP trial on Nov 11. It helped me walk much better. It seemed like I stood a little taller.

          I'm pretty nervous about the surgery and recovery. Your post definitely helps. I have had severe spasticity for years. I am hoping the pump helps me. I am hearing many good things about it. Thanks again!

          I could only hope your results are as wonderful as mine. This was nothing less than a miracle for me and I am standing taller than ever before. Spasticity had started to corkscrew my body inwards and once the Baclofen stopped that my entire frame opened back up. What's amazing is the doctors had been convinced my motility problems were neuropathy and not spasticity. The moment I was properly diagnosed with severed spasticity the rest just fell into place.

          Please remember the trial dose is only 50 micrograms and the actual post-surgical dose could be much higher. Mine is 300 micrograms so the trial dose was only 16% of what I truly needed. The trial was strange because my brain was getting a lot of feedback that I could not properly categorize. It's like when your foot falls asleep you get that pins & needles sensation. Think about that if your whole body begins to wake up. It's odd! Now that I have a pump my brain is so much calmer. I’m not getting constant feedback in my brain that my entire body is in distress. After the trial, the spasticity & pain came back with a vengeance and that was a better hint that the trial was successful.

          I tried to put in enough detail so most questions were answered. If you have anything else please let me know. Not a single friend has not commented on how great I look (it’s good for the ego). Again, I hope your results are as fabulous as mine and I wish you well!

          Comment


            #6
            Originally posted by alishape View Post
            That was a beautiful post Marco. It was so heartening to read. This disease takes so much from us, but you are getting some of your own back! Congratulations!
            Thank you! I cannot take any credit for the results, but I am thrilled to be the recipient of a modern miracle/marvel. I am not as strong as I was once, but I'm strong enough not to use the wheelchair. I spend 2 years in PT without any tangible result, but we were doing enough to maintain my muscles and prevent atrophy. That was a key to my bounce back after the pump stopped the spasticity.

            Again, thank you for the comment and I wish you well!!!

            Comment


              #7
              Kimba,
              Why do you have to make me cry? That's so unfair! Going into the procedure I knew they could put morphine (my current pain medication) into the pump. The doctors were hesitant to do so because every medication added makes it trickier to control dosing. Since the medications mix there is no way to increase on medication without increasing the other. My medication was increased from 50 to 300 micrograms, so if morphine had been present I would have also been receiving 6x the dosing. No bueno! Morphine is also acidic and can be hard on the pump causing premature failure.

              And you are 100% correct about pain management doctors. My pain management doctor lost his mother, with MS, about 2 months ago. The second he found out I had MS he hugged me in the middle of the intake evaluation. Since that time he has hugged me every time he has seen me. His mother was not in good shape over the final years of her life. Multiple times per month, the doctor would drive over 14 hours to visit her. Beautiful! I cannot wait for him to see me, but it will be bittersweet because of the loss of his mother.


              Rehab was so incredible. My wife and I have basically muscled through the past several years. We kept buying equipment as the need arose without having any expertise or real assistance. This included a shower chair, rollator, suction cup grab bars, walking canes, etc. Rehab taught me the correct way to do many things including: wheelchair use, walker use, safely using stairs, even exercises to strengthen my breathing. I only wish I had gone to rehab in 2012, it may have saved my job, ability to walk, drive, etc.

              RDMC is a treasure trove of wonderful information and such a blessing to our community. Thank you for the link as I missed his original post.

              You are 100% correct about the pump information and refill date. My pump will need to be refilled 2-3 times/year. That's considerably better than the 13 pain management and 13 pharmacy visits I had to make in one year. Not driving I had to get rides to these appointments. If my wife had a work commitment I had to use the paratransit bus or arrange for a friend to drive me around. No bueno!


              Thank you for the well wishes. I am just thrilled that my wife has a much easier life. She's been my primary caregiver and it's broken her heart to see me in such pain. I'm not 100% sure about the Ambassador program. My 2015, advocacy work will increase many fold, but I need to maintain a healthy life balance to ensure I do not overdo it. Thank you again for everything and I wish you well!

              Comment


                #8
                What an awesome testimony! I am so happy for you and your amazing wife.

                I pray for a continued increase in faith, wellness and love for your family. Keep looking up!

                Comment


                  #9
                  Hey Marco,

                  So glad to read your story. Well that explains why you were in the hospital.

                  I've always called my pump a "miracle", that's what it felt like to be out of pain and be able to move my leg again. I was recently in my physiatrist office waiting, and she accompanied a man and his family out into the lobby. She had been talking to them for an hour explaining about the pump...he was wheelchair bound. She pointed them in my direction and said if you want to hear first hand what it's done for someone...and she pointed them in my direction. Of course, I said, as I always say, it's a miracle.

                  Just a question, do you know at what level they placed your catheter? Hope the catheter incision site heals up for you soon. I found it the hardest to deal with because it's always rubbing up against your chair, or bed, even you waistband.

                  One suggestion...if they gave you a elasticized brace/binder, wear it. It helps secure the pump in the right spot while you're healing and your body is building up scar tissue to keep it in it's "home"...the pocket the surgeon made for it.

                  Hope to hear more about your experience in the future.

                  Comment


                    #10
                    Originally posted by rdmc View Post
                    Hey Marco,
                    So glad to read your story. Well that explains why you were in the hospital.

                    Just a question, do you know at what level they placed your catheter? Hope the catheter incision site heals up for you soon.
                    Yes, thank you for the concern. It means more to me than words can express. I was in the hospital for 6 days and the rehab hospital for 6 days. The first 6 days was miserable (not pump related) the second 6 days were an incredible learning experience.

                    They placed my catheter at T4. My doctor said if they put it up any higher it could have a negative impact on vital functions. The catheter spot has been bugging me a lot, but still much better than the spasticity-related pain.

                    I do have an abdominal binder and I have been wearing it. I also have an LSO brace that I prefer to the binder, but it does the same thing.

                    Thanks again,
                    Marco

                    Comment


                      #11
                      Originally posted by Marco View Post

                      They placed my catheter at T4. My doctor said if they put it up any higher it could have a negative impact on vital functions. The catheter spot has been bugging me a lot, but still much better than the spasticity-related pain.



                      Marco
                      When I was reading your list of "improvements" in your health, I figured they had placed it high.

                      Mine is at T9 because at the time it was placed, most of my spasticity was below my waist, but then I started with some upper body spasticity also so I had to revert to a small dose of Baclofen to handle that.

                      I think most of the improvement we see post pump is due to the baclofen being delivered intrathecally, but also, there's the matter of being able to get off meds whose side effects have a negative impact on our QOL.

                      The high doses of baclofen alone can make one drowsy and lethargic. Add to that pain meds, and side effects worsen even more.

                      That catheter incision will heal eventually. My doc prescribed some cream, and I can't for the life of me remember what. Keeping it from getting dried out seemed to help with the comfort level.

                      Comment


                        #12
                        Originally posted by rdmc View Post
                        When I was reading your list of "improvements" in your health, I figured they had placed it high.

                        Mine is at T9 because at the time it was placed, most of my spasticity was below my waist, but then I started with some upper body spasticity also so I had to revert to a small dose of Baclofen to handle that.
                        You are correct. This was one of the items I had insisted on prior to the surgery. The surgeon refused to hear the conversation saying he would place the catheter wherever instructed by the PM&R doctor. So I contacted the PM&R doctor to ensure proper placement (for me).

                        The intrathecal delivery system is indeed the trick. High doses of baclofen greatly reduced my quality of life, without producing the desired effects. A small fraction of the dose delivered intrathecally produced an insane level of improvement with minimal and tolerable side effects. For example, I have a little nausea that is easily treated with Zofran. I may be able to get off all pain medications. So I'll trade narcotics for Zofran (prn) any day.

                        Thanks again, for your concerns and comments and I wish you well!!!

                        Comment


                          #13
                          How did the Dr. know where to place your catheter tip in the spine?

                          Most of my spasticity is in my legs, but I do lean over when walking. Lately its been difficult to lift my arms over my head to reach in the cupboard or wash my hair.

                          I am going for MRI of my spine and brain with and w/o contrast, ordered by the neurosurgeon. I have another apt with him on Jan. 15.

                          I do feel he is being very thorough, but I just met him.

                          Comment


                            #14
                            Originally posted by ijustcallit View Post
                            How did the Dr. know where to place your catheter tip in the spine?

                            Most of my spasticity is in my legs, but I do lean over when walking. Lately its been difficult to lift my arms over my head to reach in the cupboard or wash my hair.
                            The doctor makes an educated guess. I'm sure he would have put it lower, if the all the spasticity was confined to the legs. I certainly gave my $0.02, but we agreed T4 was the best place for me. I will say this much, if we had put it lower, my legs my have gotten even more relief at a lower dose and it would have been worth it.

                            You might ask your doctor for a script for Occupational Therapy, where they can help you make a plan about the cupboard and hair washing.

                            Comment


                              #15
                              What kind of spasticity do you have in your upper body?

                              My hands and arms are sluggish/weak. Right side is worse than the left side.

                              Pain & Rehab Dr was talking about T-9. I just met this Dr. also. He did the pump trial.

                              Thanks for your input! I appreciate hearing about others experiences.

                              Comment

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