A month later
September 2, 2008
Wow, I can’t believe a month has passed since my baclofen pump surgery. I continue to have the pump adjusted. It is a process like everything else in life. I go for weekly adjustments until we find the perfect dose. Meanwhile, life goes on.
I work with a physical therapist to help strengthen my legs and stretch out my muscles. This time there is light at the end of the tunnel. This is the third endeavor with the same pt. Bless her, she is extremely experienced in progressive ms, understands all that atypical ms encompasses and cares. Most of all she cares.
The last time I saw her, I was getting ready for the pump surgery-back in the beginning of June 2008. She tried to patch me up as best she could until the surgery, but was fighting an incredibly steep uphill battle. Finally conceding that despite her best effort I was losing ground. The best I could do was wait for the surgery, after which she would be of real help. The tears in her eyes as she had this heart to heart with me, touched me deeply. She cares about her patients. Her patients are real people struggling, fighting for better moments. The openness of her concession touched my heart so much that I really felt her pain. Felt and understood the helplessness of her words. She was in the business of making people better and I was the wrench caught in the cogs.
So, a month later with physical therapy script in hand, I sashayed into her office. With jaw dropped to the floor and tears in her eyes this physical therapist welcomed me back with open arms. Literally, open arms. Our smiles stretching from wall to wall. “Now this is something to celebrate! You have made my entire month by walking in here.” Her words touched my heart. She had helped me out so much in the past, I was glad to see her eager face again.
I barely notice the pump anymore. Once in a while when I move into a certain positions the pump bumps into my ribs. That I feel. Otherwise, not so much. We (hubby, son and I) nicknamed the pump ‘Tigger’ because it keeps me bouncing. Meanwhile, they (hubby and son) jokingly consider me a cyborg. I’ll gladly take that label.
I move so easily now. Still not as naturally as one should move, but so naturally that I can easily forget, if even for a moment, ms has changed my life. Have you ever been caught in a wind that starts at the top of the trees and blows threw you as it sweeps past. I was caught in one of those winds the other day. So what you say. Well I was actually able to throw out my arms and enjoy the sweep breeze because I didn’t have lofstrand crutches attached to my arms.
We ( I include myself before ms) take movement, simple, easy, graceful, natural movement for granted. The simple beauty of walking naturally, of moving with ease, without thinking about it, without mechanical assistance is something we should all take a moment and enjoy. Really, take a moment a walk, simply walk, take a few steps. Concentrate on just each step. Feel each foot fall, feel the ground, the floor underneath your feet. It is truly a wonderful sensation.
That is probably the greatest lesson I have learned this past month, these past few years living with ms: take each moment as it comes, enjoy every moment, see the simple beauty by keeping your eyes and your mind where your feet are. In this way you are always awake and aware enough to enjoy and live each moment. Good stuff. At least good enough for now.
Hey, look ma no crutches!
August 22, 2008
Well, I am three and a half weeks post surgery. And look ma, no cruchtes! That is right. I shed my afos (ankle/foot orthotics) and forearm cructhes. I don’t even use a cane. I am walking normally.
I forgot that your feet actually go one foot in front of the other when you walk. For so long my feet went out to the side. In fact, my neuro-rehab doc described my walk as that of a Zombie: stiff legged and painfully slow. She even reminded me that I should have been in a wheelchair were it not for my stubbornness, and unyielding decision to stay upright until I couldn’t anymore. Giddy with excitement over the results, this doc had me walking for everyone. And I was glad to oblige.
I also found out that I am more of the exception than the norm with my baclofen pump results. Most people with mulitple sclerosis, whether primary progress, atypical ms, or your normal garden variety do not get the pump so early or have such great results.
Now, after so many months with this blog, I know what you’re thinking. Why? Why are my results, well quite frankly atypical? I asked the same question. I even asked why they don’t implant the pump on more people who are still mobile. They tend to have many people who are immobile, even with twisted limbs before a pump is implanted.
Again, relativity and everyone’s ms is different, comes into play. See, in regards to my spasticity I am described as looking more like a spinal cord injury patient. From my trunk down to my toes I have pretty equal severe spasticity. Even leg weakness was bilateral and pretty even; although, my right side is the weaker side but only slightly.
So, most of the time patients have only one side with severe spasticity. Because the pump dispenses lioresal (liquid baclofen) through a catheter implanted directly into the spinal canal, spasticity is relieved bilaterally. If one side is severely spastic and one side not so much then the result of the pump will be one side too weak to work properly and one side somewhat relieved. Not good results.
I guess in that case I am lucky. Because of the bilateral severity, I am reaping the wonderful relief that the baclofen pump promises. Imagine that, being so inhibited, being so spastic, being so affected actually works in my favor. Ironic, really. And I love irony.
The other major reason my docs don’t see such great results is that many people choose not to have the pump implanted. I would like to say I don’t understand why someone would choose not to have the pump implanted. But I can’t.
Back in February of this year, my neuro-rehab doc told me I needed the baclofen pump after botox injections were unsuccessful. As I explained somewhere else in this blog, botox is injected in isolated muscles to relieve spasticity. Due to insurance red tape, I needed to max out on oral baclofen AND have unsuccessful botox treatment before being covered for implantation of a baclofen pump.
In February 2008 I had my botox follow-up. The botox only relieved my calf muscles to the detriment of the rest of my leg and torso muscles. I went into that appointment in severe pain because the rest of my spastic muscles were trying to compensate for the now less spastic calf muscles. Basically, my whole gait was thrown off (again! -first time of course is because of MS) creating a great deal of strain on my legs and lower back.
Yet, I still said “NO!” to the pump. I wanted to try botox once more. So, May 2008 was the target date for the next botox injection. Meanwhile, I was sent to physical therapy. I spoke with hubby, family, and friends. All said, “TAKE THE PUMP!” Oh, no. I was too young for such a permanent, drastic move. My physical therapist, wonderful woman who is blunt. Which I really like. Give it to me straight. She said “If you got worse after the first botox treatment, what makes you think the second one will help?” Great question, don’t you think. I had no answer for her. I had to admit that botox wasn’t going to work.
Left with no other option, no other feasible, reasonable, sane option, I informed my neuro-rehab doc in May 2008, that I did indeed want the baclofen pump. Three months later and I am a different looking person.
As my doc says, “You don’t even look like anything is wrong!” Good stuff really. I am even getting used to having this baclofen pump in my side. I am beginning to think of it as my little ticker-it’s what keeps me going physically. Well that and ten months of chemo (Cytoxan). Hubby, son, friends and family keep me going psychologically.
Recovery from Surgery
August 12, 2008
Well, it’s been two weeks since my surgery to implant my baclofen pump. The surgery itself went great. I am healing nicely and the pump is working great. I am still not fully weaned from the oral baclofen, but making good progress.
Apparently, my body does not like either anesthesia or percocet. That was the one hitch during the recovery in the hospital. So, on Monday July 28 I was trying to recover from surgery while getting sick. Oh yeah, one more thing. Because implanting the pump is one HUGE lumbar puncture, you must lay flat for the first 24 hours. I knew this going into the surgery but didn’t count of being sick from the meds. The next day they switched me from percocet to vicoden. Much better! Sigh of relief!
The nurse, which I had the prior day, even said “I bet you second guessed your decision yesterday.” That was and understatement. But, I did keep reminding myself that having a baclofen pump is a process. First you must heal from the surgery while transitioning from oral to liquid baclofen and going through physical and occupational therapies.
The big question of course is did it work? Does it work? Yes! For me, the pump is working. I am walking with only a cane now. I packed away the forearm crutches and leg braces. There are still some nagging stiffness, but as I said I am still transitioning.
I guess one of the hardest parts of this whole process for me, and it is really why I didn’t initially jump at the idea of a pump, is the idea of having this device in my body. It is like a mental game I play. Do I want to live the rest of my life (41 years old now) with this artificial device in my body? Yes, it definitely helps me walk, reduces pain level, and most importantly I can the relief in my son’s and my husband’s faces. So I logically and intellectually tell myself this is the best.
After all the chemo and now the pump I feel better than I did three years ago when I first walked into my current neurologists office. The catch is with atypical multiple sclerosis that acts just like primary progressive multiple sclerosis I can’t help but think I am on borrowed time. Really when you look at life there are no guarantees of health or longevity so in a way we are all on borrowed time. Makes me want to make a difference in this world, even more than I did before. I feel a pulling toward helping people because through all of this I have learned that we are all suffering in some way whether it is outwardly visible or inwardly destructive. All of this, the past three years, I have met people that have no health issues that are miserable, unhappy or people who seem to have it all yet they are nasty or not quite right. We all suffer somewhere.
Back to the pump. On the afternoon of July 29 I was transported to a rehab hospital where they should have adjusted the pump and given me PT and OT. I somehow slipped through the cracks and no doctor made any adjustments. In fact, I never saw a doc there despite my constant asking and badgering. So on Friday August 1 hubby (who was by side the entire week, even sleeping the first night in the hospital because I was so sick) and I left the rehab hospital. Filed a complaint and walked (Yes, I walked) out of that hospital and into my neuro-rehab doc’s office where she explained the entire pump, precautions, expectations, and made the first adjustment.
Both the neuro-rehab doc and the surgeon went over the pump before the surgery. I was well aware of what I was getting into before I jumped. I know since we (hubby and I) made the decision to undergo implantation of the baclofen pump I have heard other people say they were not prepared for or expected too much from the pump. Again, I think this is what is wrong in the medical field. Too many docs and others see us as patients (things like a chair,the manilla file folders that keep our medical history) and not people. I have learned to ask any and all questions, to research as much as I can. And most of all I feel very lucky and happy to have the doctors I have. Nothing can replace trust and caring when it comes your health.
Now we’re getting somewhere
July 23, 2008
I finally found some neurologists, multiple sclerosis specialists, who were willing to work with me. Help me, we-hubby,me,son,family-figure out what was wrong with me and help by treating symptoms initially.
Already on baclofen for spasticity which was helping a little, my third visit was a jackpot of sorts. Dr. Kindhearted and Dr. Caring suggested Provigil for fatigue. I used to be one of those early risers who felt the day was half over by 8 AM. Rising at 5 AM and after a few cups of coffee I tore into my chores. By 8 AM chores over, I began my day. As a homemaker initially in my marriage, then as a homemaker and college student. I went back to school to become a secondary school English teacher.
After graduating Summa Cum Laude, I set up an internship with a local high school. With several teachers retiring, I was already assured a job. It was that spring of ’05 that I set up the internship and by summer ’05 pretty much incapacitated. Besides spasticity, fatigue set in by 5:30am rendering me unable to really do anything. The summer heat also rendered me immobile, only I really didn’t even know the heat had anything to do with it. I had to give up the internship and subsequent job. Disappointment doesn’t even begin to describe my feeling.
Back to September 2006, one by one the docs were attacking my symptoms. First was the spasticity in my legs, second was the fatigue with Provigil. I knew how much Provigil helped because my sister was already on it. She was just like me, a little energizer bunny until MS hit her. Needless to say I was excited about the prospect of having more energy. Maybe I could make it past 7pm before I passed out.
But, wait, there’s more. Dr. Kindhearted and Dr. Caring diagnosed me with Multiple Sclerosis. Most likely Primary Progressive Multiple Sclerosis considering the lack of any the symptoms remitting. WOW! An actual diagnosis! Although it came with a caveat. BIG SURPRISE, huh!?!
Dr. Caring explained that the McDonald Criteria, the official criteria for diagnosing MS, is somewhat arbitrary. He explained that a committee of neurologists convened and decided on the “official” requirements upon which to diagnose multiple sclerosis. All the while knowing that they can never be 100% sure they were dealing with MS. Dr. Caring has been an MS specialist for twenty-five years and knew the toll arbitrary parameters took on patients and their families. HE was not about to let HIS patients go through that turmoil. Why is this important, well because I did not fit neatly into the arbitrary criteria. So even though it seems like PPMS, I was to carry an atypical Multiple Sclerosis tag. Hey, they can call it, me whatever they liked as long as I was being treated.
But, Wait it gets better. I have baclofen, provigil, a diagnosis and now STEROIDS. Solu-medrol to be exact. Wow! A diagnosis, symptom meds (baclofen and provigil) and Solu-medrol. A five day course of steroids. And a follow-up appointment in three months.
Solu-medrol should give me a boost. Maybe even help with the devastating vertigo I was feeling. The docs were tackling my symptoms, taking it slowly, giving me hope. They were also acutely aware of my aggressively fast downward spiral. They kept increasing the baclofen as the spasticity was unrelenting, the vertigo was constant, bladder and bowel issues continued, fatigue, incoordination kept worsening.
Getting approval from my insurance company took about two weeks then the plan was enacted. Ok, I would go to the infusion center at the hospital for the first dose of Solu-medrol the follow-up with a visiting nurse for the remaining four doses. The hospital dose took about three hours because they hold you for about an hour afterwards to monitor your reaction.
That night a representative from a third party coordinator would drop off the four add’l doses of solu-medrol and the paraphernalia. Things like IV pole, syringes, heparin, alcohol swabs, etc.
The next morning the visiting nurse showed up explained how I was to administer the solu-medrol to myself. HOLD ON! No one told me I was going to administer the meds to myself. What are they thinking? I’m not a nurse. What if a large air bubble passes through the IV tube? What if I don’t regulate the drip just right and it only takes me an hour not two hours? What if????
Well, the visiting nurse, Phyllis, took me step by step through the entire process. It’s ok if it takes only an hour instead of two. Some patients prefer that. If air bubbles accumulate in IV tubes, call the office immediately. The phones are open 24/7, even though I was taking the steroids in the AM. She really alleviated any fears, made me believe in myself, took the extra time. She would even be back in two days to change the needle and take blood.
On day five Phyllis came back a last time to extract the IV needle, bandage me and wish me luck. I felt kind of silly, though, because all it took was pulling out the needle, putting pressure with a gauze pad so the bleeding stopped and then applying a band-aid.
I was good to go. Let the effects begin. Keep in mind that for the first week or so your body is so wired that sleeping is difficult. Being around people can be difficult because you are so wired that every little thing can get under your skin. This first course was a learning lesson for me, my hubby, and son. But we managed.
Atypical Multiple Sclerosis 