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.
Baclofen Pump
July 27, 2008
Tomorrow, July 28, I undergo surgery to implant the baclofen pump (ITB Pump-Intrathecal baclofen Therapy Pump). Medtronic makes the pump; click Medtronic to learn more about the pump. I will on a short hiatus while I go into rehab. Then I’ll be back blogging about my experiences. Hopefully, someone else that has to go through the same surgery can read about this and get a real world understanding of what happens.
I undergo surgery around 7:30AM tomorrow. The procedure takes about 90 minutes. A small incision is made just below the skin into the layer of fat at waist level on either right or left side. The pump is wrapped in cloth and inserted into the incision. The another smaller incision is made in the lumbar region of the back at the spine. A small catheter is tunneled from the pump to the lumbar region and inserted into the intrathecal space of the spine. I am stitched up and recovery begins while liquid baclofen begins it drip into the spine.
Afterwards I need to lay flat for 24 hours to avoid a massive headache as this procedure is like one mega lumbar puncture. Then I am whisked away to the rehab hospital for four to seven days. Probably seven days.
Why rehab? Well, mainly to wean me off the oral baclofen. Additionally, rehab will help to strengthen muscles that are currently spastic, teach me how to use muscles the correct way again. You know, things like that. My oral baclofen will be reduced from 110mg a day to 80mg a day. Rehab will adjust the pump will continuing to reduce the oral baclofen.
Within seven days I will be released, sent home and hopefully feeling much better than I do right now. I am hoping the painful spasms will end so I can stop taking pain pills. Potentially, fatigue will lessen as 110mg daily of baclofen increases fatigue.
I am both eager to have an ITB pump and work at rehab. Having a positive outlook has been an advantage for me through Atypical Mulitple Sclerosis, most likely Primary Progressive Multiple Sclerosis. I know I have a choice in my outlook. I do not expect certain things to happen so I am usually pretty happy most of the time.
I went through the ‘Why Me’ phase years ago. It wasn’t helpful. I came to the conclusion why not me. What made me so special that I actually thought I was above getting sick, hurt, etc. Because I am surrounded by people who care, love and support me I am glad that I have Multiple Sclerosis. Sounds weird?!? I guess it is, but I hope that because I have MS, maybe I can lessen the hardship of one other person who also has MS.
I can send out good thoughts and feelings to others who are suffering from MS. And not just the physical and mental effects of MS, but also the emotional toll it takes on their spouses, children, friends, families. So often I hear from others about domestic upheaval from the sheer emotional and financial toll from MS, espeically Primary Progressive Multiple Sclerosis. I mean PPMS can be a very isolating disease as sufferers have great difficulty moving about their communities for both daily living issues and SOCIAL CONNECTIONS.
In any event I will blog more when I return. Until then I wish you all well.
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.
Real Diagnosis
July 21, 2008
In June 2006 after an unsuccessful year of pursuing some treatment with three different neurologists, I hit the jackpot with Sis’s neurologists (one fellow and one Multiple Sclerosis specialist). From June until early August I went through MRIs, blood tests for a whole lot of different diseases, and lumbar puncture.
When these test results came back to Dr. Kindhearted (my primary neurologist) and Dr. Caring (the MS specialist), Dr. Kindhearted called informing of these results. Unfortunately, they all came back normal. Now I say unfortunately only because this delayed diagnosis; and I thought they would stop treating me. I had only just begun the baclofen but I felt some improvement in my legs.
I followed up in August 2006 and was sure Dr. Kindhearted and Dr. Caring were going to say, “Well since all the tests are normal except for that small white spot on your MRI which we are pretty sure isn’t causing all your symptoms there is nothing more we can do.” But they didn’t. In fact, Dr. Caring said the normal test results just makes their job harder, but that is ok because they like a challenge. He also said that even normal test results are helpful to them because it points them in different directions or helps eliminate other diseases. Multiple Sclerosis is really a disease of elimination: other diseases must be ruled out to rule in MS. We were still on track, they were still digging.
They increased my baclofen again at this visit in the beginning of August. They put me through the litany of neurological tests in the office. They then conferred and returned to the exam room. Apparently, my eyes were getting worse. The abnormal eye movements were more pronounced, incoordination worsened in both hands and legs. The spasticity worsened, worsened from mid-June to early August. That was disheartening to hear. Although I knew my eyes were not right. It felt as if I was losing coordination of my eyes, like my eye muscles were weak and didn’t seem to do what I wanted them to do.
In addition to increasing the baclofen, they did genetic testing for CADASIL. As you may know my two sisters were already diagnosed with RRMS. MS is one of the differential diseases when diagnosing CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy). WOW, what is that?
Well according to the Genetics Home Reference (Click for the long story) website it is an inherited condition that causes strokes and other impairments. That’s they short story.
I was sent home with the appointment for the end of September still in tact. It was then that I would get the results from the genetic testing. Yikes! Although the docs didn’t seem to think that it was CADASIL, but due diligence must be followed. Ok, I guess I can deal with that, I mean after all these docs were traveling down roads of which I am sure the buffoons I had previously seen never even heard about.
Hubby and I went home relieved. We survived a second appointment and these docs and Dr. Kindhearted and Dr. Caring were still busy searching for answers.
Atypical Multiple Sclerosis 