Bridge across the Helmand River. Photo by Mohammed Omar Lemar
A long time ago……no, too depressing.
Some time back……no, too vague,
Once upon a time…..yep, that’ll do.
(Ahem) Once upon a time, I found myself with my ODA, sitting on a bridge over the Helmand River in Southern Afghanistan.
A pre-dawn raid was being conducted in a nearby village by another team and we were there to stop people from leaving the party early via the bridge. Due to the timing, we were forced to skip our morning coffee and as the sun rose and things calmed down, our Afghan Army counterparts broke out the necessary bits and began to brew up a pot of tea.
When it was finished, they offered us some and a teammate asked if it was safe to drink and did I want a cup? I replied that if it was made with bottled water or he saw it boiling, then it was safe and yes, I would very much like some morning caffeine. He went back over with the interpreter, who verified that it was indeed made with bottled water and returned with a cup for me.
As I sipped mine, I looked out over the river and watched two men washing a car in the shallows, a man and his son watering their goats by pushing the whole herd out onto a sandbar, and several women washing clothes while 3 children bathed nearby.
I was near the end of my cup, thinking that the tea had a rather earthy aftertaste and as I watched one of the goats lift it’s tail to relieve itself in the slow flowing water, I felt some grit between my teeth. The tea was sweetened with raw sugar, so an undisolved grain or two was to be expected, but I looked at the, now visible, bottom of my cup and upon examination, the grit was unmistakably sand, with a small pebble or two added in.
I waved the interpreter over and explained my concerns. He went back to ask our tea makers about the water quality. He was raised in Southern California and even though English wasn’t his first language, it was the one he slipped into as I heard him exclaim, “What??!! Oh, no!”.
Turns out that there was a bit of misunderstanding/misinterpretation on both sides. The water had come out of a bottle. An empty bottle that had been filled at the river’s edge, near the base of the bridge. It had also not been boiled because time was variable and the thought was that boiling would make it too hot to enjoy right away.
I dug through my bag and enjoyed a nice chaser of Ciprofloxacin and gave some to everybody that had drank the tea. Well, almost everybody. I didn’t get to everyone in time and that unfortunate soul had to suffer, both the wrath of the river and my less than stellar bedside manner, but that’s another story.
The point of my story today is to make an addition to a previous post about understanding the language and managing expectations between you and your healthcare team. The information you and your team share has to be clearly understood by both parties, as do any expectations. As the head of your own healthcare team, (which you should be, by the way), the responsibility falls on you.
Those of us with multiple sclerosis have, medications, therapies, assistive devices, etc, etc, to consider. It behooves you to understand and have a realistic view of the risks and/or benefits of all these.
For example, I have an intrathecal baclofen pump. The decision to have one implanted was not entered into lightly and was not made before weighing every expectation, possible benefit, and risk. In the end, it was this honest and, understood by all parties, “weighing” that made me decide to accept the risks and inconveniences in favor of the possibility of a better quality of life.
That’s an extreme example of both sides understanding the difference between bottled water and water from a bottle, but hopefully the point is made. When it comes to MS, make sure you understand what is being said to you and that what you’re saying is understood.
I started a Valentine’s Day post, but couldn’t make it work. I was trying to be funny about being diagnosed 8 years ago on Valentine’s Day, but it ended up as kind of a dark post and that wasn’t what I wanted. I’m sure there will be plenty of those, but I didn’t want to go that route on the 14th.
Next, I had a swallowing study and a visit with the speech therapist. Yeah, multiple sclerosis doesn’t stop with arm and leg muscles, so I’ve been choking more and more and having a weak cough doesn’t help clear my airway when I aspirate stuff. Of course I didn’t choke once during the barium swallow, so other than the barium drinks and coated snacks, including half of a cookie, it wasn’t a super productive experience. I did get a little device to strengthen my expiratory muscles so I can cough, etc forcefully. It’s a nifty little exhalation resistance device and seems to be working well. If it made trumpet, slide whistle, or whoopee cushion sounds (I have 3 little boys), it would be just about perfect.
A couple days later it was MRI time. My annual brain one (no new or active lesions) and both shoulders (not great reports, but I’ll get to that). I’m not claustrophobic and my hearing isn’t great, so as long as I have well placed ear plugs, I just go to sleep in there. I had planned on one long scan (and nap), but for a variety of reasons, they treated each body part as if it belonged to a different person and I had 3 scans with about 30 minutes in between.
My implanted baclofen pump is MRI safe and shuts itself off when it detects the magnetic field, then back on 10 minutes after it no longer detects it. Between MRI 1 and 2, I stayed in the MRI suite and apparently didn’t get far enough away, so the pump stayed off long enough to set off the alarm. It was the 2 tone, critical alarm, which sounds a bit like a European ambulance, and coincidentally, like any number of hospital alarms, so I didn’t even notice until I left to grab lunch before MRI 3. I was actually in the restroom when I realized that the beeping was coming from me. I noted the time and sure enough, it went off again 10 minutes later and 10 minutes after that and so on.
One of those times was in an elevator and the other passengers started to look around for the source of what was obviously an alarm before all turning to look at me. No one said anything, but you know it was just the embarrassment of having to ask if I was beeping that stopped them. I felt like a person compelled by shame to confess to farting on an elevator, “OK, it was me! That awful sound came out of me!!”.
None of us said anything, but I probably looked guilty enough that everyone knew it anyway. The perfect scenario would have been if someone had worked up the courage to ask and I had the wherewithal to stare back,wide eyed, and hoarsely whisper/croak, “Oh no!! Run!! Save yourselves!!”.
Then again, I bet the penalty for causing a panic on a Veteran’s Affairs hospital elevator is pretty stiff.
I haven’t completely lost my touch. The MRI techs were a little nervous about my pump anyway, so when I told them the alarm was going off, there was a little hand wringing and they wanted to know if they should do something, or call someone. I kept a nice, straight face and told them I was meeting the pump rep after the 3rd MRI anyway (standard procedure) and probably wouldn’t explode for an hour at least. This didn’t ease their minds at all, but my smirk was probably big enough to be seen on my head/brain scan.
Both are MRI images of my right shoulder
OK, I’ve digressed enough. My shoulders are not good….well the right one in particular. Both have been dislocated in the past, the left, just once, in the parachute incident I wrote about before and the right about 3 times, in way less exciting incidents. I knew the right one was getting worse but ignored it and had my bad knee and ankle fixed instead because they were my more important, weight bearing, joints…..right?
MS, thy name is irony,……or maybe mean spirited coincidence? I’m not sure how that works, but I am sure that turning my arms into my weight bearing, wheelchair using, transferring, etc, limbs, is just making my shoulder problems worse. I’ll post the MRI report at the end of this post, but the impression I get is that we’re past the point of more rehab and probably past the point of steroid injections too.
I’m afraid of what the ortho doc is going to say, but I guess it’s because I know what he, or she is going to say. I really can’t afford to let this get much worse, but I dread being down to one fully functional limb while I recover from whatever the “fix” is. I’m hoping it’s a minimally invasive arthroscopic clean out, debridment, cartilage shaving/planing surgery with no weeks of immobilization. One that I can move and rehab as much as I can stand after. I know “hope” isn’t a course of action, but I’m daring to hope anyway.
Here’s the report. Maybe I’m worried about nothing, but it doesn’t sound very cheery to me.
Findings:
Marrow: There is no bone contusion or fracture.
Acromioclavicular joint: There are severe degenerative hypertrophic changes at the acromioclavicular joint with cystic change in the distal clavicle at the joint and bulky osteophytes extending inferiorly from the joint.
Subacromial and subdeltoid space: No significant collection of fluid in the subacromial or subdeltoid space.
Rotator cuff tendons: Tendinopathy supraspinatus tendon with low grade undersurface partial tear at the insertion site posteriorly. Mild tendinopathy infraspinatus tendon. The subscapularis tendon and teres minor tendon are unremarkable.
Rotator cuff muscles: Unremarkable. No atrophy or edema.
Glenoid labrum: There is a 0.6 x 0.7 x 0.9 cm para labral cyst associated with the posterior superior glenoid labrum consistent with underlying labral tear. Possible labral tear at the junction of the anterior inferior labrum at the site of a probable small full-thickness cartilage defect.
Long head biceps tendon: Intact. Small amount of fluid within the extra-articular tendon sheath which could represent mild tenosynovitis or physiologic medication with small glenohumeral joint effusion present. Additionally, there small loose bodies/debris within the tendon sheath of the extra-articular long head biceps tendon.
Glenohumeral joint: There is mild thinning and irregularity of the glenoid cartilage with small full-thickness cartilage defect suspected at the anterior inferior glenoid labral junction. Additionally, there is full-thickness cartilage loss anterior-inferior glenoid. There are multiple loose bodies within the inferior glenohumeral recess, the largest measuring roughly 1.2 x 0.8 x 0.6 cm. Small loose bodies are seen anterior to the glenoid, posterior to the subscapularis tendon. Additionally, there is a loose body within the subscapular recess measuring roughly 1 x 0.7 x 0.7 cm in diameter.
I’m having my 9th dose of Ocrevus this coming Friday (29 October) and since I’m a glutton for punishment, I’m having my baclofen pump refilled, the baclofen dose rate turned up a bit, a flu vaccination, and all my yearly bloodwork done. I figure that even though I’m cleared for the faster infusion rate, I’m still going to be sitting in the clinic for the better part of my day, so I might as well be efficient and get it all knocked out at once. I mean, I’m already getting one needle poke, what’s a couple more? OK, not my best logic and I may be singing a different tune after, but at least I’ll have some good material for next week’s post.
I’m actually looking forward to all this. Getting the bloodwork done ahead of my December GP appointment will save time then. The flu shot may not be 100% effective, but after my bout with Covid in early September, I’ll take even a 10% chance of not getting the flu. It’s past time for a baclofen pump adjustment. The goal has been to find a dose that tames the spacticity while still leaving enough muscle tone for my legs and lower torso to be useful. I let it go this time until the spacticity started to become a problem, so I’ll be glad for the relaxation. Finally, I’ve been on Ocrevus since it was approved by the FDA in 2017 and it seems to have my progression stabilized (no new brain or spinal lesions and no active demyelination), so naturally, I’d look forward to the continuation of therapy based on that assumption alone. However, there’s another reason and that reason is because this time around, I’m having an extra rough time with the “crap gap”.
Ocrevus is a twice yearly infusion that specifically targets the B cells in the immune system that the developers determined were responsible for demyelination. The “crap gap” is a space of time just before an infusion when the effects of the last one are wearing off and you start having a return of your old, pre-Ocrevus symptoms……ie, you feel like crap. I have no idea how medically/scientifically factual this is, but patients on both Ocrevus and its sister drug Rituxan report a period of increased symptoms 2-4 weeks prior to an infusion.
Experiences seem to vary, both in duration and intensity. Some of my gaps have been worse than others, but all have been noticeable. I usually start to feel a little extra fatigued about 2 weeks before an infusion. My last infusion in April was delayed by 2 weeks so as to not interfere with my 2 rounds of Covid vaccine, but even with 4 total weeks of gap, I don’t recall it being particularly noteworthy when compared to others. My pet theory (which is just that) is that my immune system was too busy reacting to the vaccine and building antibodies to put a lot of effort into pestering me for being late with my infusion.
This infusion has also been delayed by 2 weeks due to scheduling conflicts, but this time, I’m really feeling the gap. Extra fatigue, brain fog, uncooperative hands, arms, and legs, foggy, double vision, and just overall crappiness. If I had the wherewithal, my pet theory this time would be that the extra spacticity resulting from not having high enough baclofen levels was a big contributor. (hmm, it appears I have the wherewithal)
Regardless, this is my most memorable “crap gap” to date. Maybe I’ll start referring to it by a title worthy of it; the “crap gully”, the “crap ravine”, the “crap canyon”…….Ok, now I’m just being over dramatic.
I’ll have a good infusion/pump refill/blood draw/flu vaccine report next week. Stay tuned.
In an earlier post, I mentioned that I had a baclofen pump, so I thought I’d tell you a bit about it. A word of warning, this is going to be a long one. I’ll try to condense it as best I can, but there’s no way to tell you about the pump without telling you why I made the decision to have one implanted in the first place.
Of all the symptoms of MS that I’ve ever dealt with, spacticity was the worst. The National Multiple Sclerosis Society has this to say:
Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low back pain. Although spasticity can occur in any limb, it is much more common in the legs.
Mine was pretty severe. I know this is an old depiction of the effects of tetanus and I’m not trying to compare the two, but it’s a fairly accurate depiction of what a bad moment with spacticity was like.
I took baclofen (a muscle relaxer) in pill form for a few years, but apparently I’m a lightweight and eventually I reached a point where the largest dose I could handle without falling asleep or staring at the wall and drooling wasn’t having an effect on my spacticity. After talking it over with my neurologist and a successful trial, I had an intrathecal baclofen pump implanted. This hockey puck size pump is implanted under the skin about 6 inches right of my belly button, and has a small catheter that goes around under my skin and is inserted into my spine between the L3-L4 vertebrae. From there it goes up to about the T-10 level and delivers a dose of baclofen straight to my spinal canal. Right now the daily dose is set at 64 micrograms whereas my highest oral dose was 50 milligrams. After absorption through my digestive system and crossing the blood brain barrier, who knows how much was even getting to my central nervous system? ( I’m sure there’s a way to figure that out, but I’m far too lazy) With only about a 100th of that dose going directly where it’s needed, I have all the desired effects, with no noticeable side effects.
At its worst, something would trigger it, a stretch, clothing brushing against me, a drop of water, or puff of wind, etc and I would involuntarily extend my legs, feet crossed over each other, joints at the painfull point of hyperextension, back and neck arched, and hands curled into fists with arms pulled in tight. If I was in a chair and not reclined, this would send me sliding out like an uncomfortable burial at sea. That was most common, but sometimes the opposite muscle group would dominate and my legs would draw up and I’d be thrown forward by clenched abdominal muscles. Sometimes my arms and hands would lock out straight and sometimes if it happened mid yawn, my jaw would spasm shut on my tongue or lip. If I could only have one phrase to describe the most frustrating part of MS for me, that phrase would be, “consistently inconsistent”.
In the years leading up to the pump, I became unknowingly (well maybe tacitly acceptingly) more and more dependent on the spacticity to “walk” and hold me upright. Imagine tottering around on stilts to get an idea what that was like. I would lever myself upright and swing my stiff legs out in little semi circles rather than flex them at the hip and knee to go forward, or pivot and “moonwalk” backwards into a desired position. My constantly rigid abdomen made going to the bathroom……interesting. The constant clenching affected both the act itself and the motility of my digestive and urinary tracts, resulting in a variety of incontinence issues.
I’ve got to pick on the VA for a second. They provided adult diapers and shipped them to my house in discrete, large, boxes, wrapped in black plastic……….10 at a time. The delivery driver had to make 2 trips with a hand truck to get them all in a giant tower on my front porch. There are only a couple things that are shipped “discreetly” like that, so I’m sure my neighbors either thought I was soiling myself 10 times a day, every day, for 6 months at a time, or had entered the adult toy industry in a big way.
(Experiences with the VA vary. I’m poking a little fun at them, but I’ve had a mainly positive experience. That’s another post for another time)
When the pump took effect, all the stiffness in my legs and abdomen (everything below T-10 level) was gone and without it, I went completely limp. Keep in mind, this is my experience and might have been different if I’d had the pump put in sooner, my spacticity hadn’t been so severe, I hadn’t been willing to rely on the spacticity instead of looking for an alternate solution, etc. Regardless, I spent close to a month in bed, having to rely completely on my wife to pull me to a sitting position and slide me to my wheelchair or a toilet/shower chair with a slide board. If she wasn’t a nurse with lots of experience moving patients, we would have needed help with my post op care. My first trip to the VA after the surgery had to be via ambulance because without being strapped to it, I couldn’t sit in my wheelchair very long and couldn’t begin to transfer into a vehicle.
Everything above T-10, arms, hands, and so on, is unaffected, but putting the catheter high enough to relax them wasn’t an option. The way it was explained to me was that it would have to be a cervical placement to relax my arms and there are other nerves that exit the cervical spine that are important for things like breathing, so relaxing them is less than ideal. Also, the dose to relax my legs and torso is higher than for arms, so if the pump was programmed for a dose high enough for those muscle groups, my arms would be completely limp.
I’m still experiencing incontinence but it’s different. Now instead of clenched muscles being the problem, they’re relaxed and instead of urgency because of too much pressure, there’s urgency because I have to relearn what to flex to hold it. The good news is I’m a guy so keeping a portable urinal by my recliner or bed is a convenient option.
With effort and therapy, I am slowly trying to activate muscles that haven’t been used (voluntarily) in years. Short of forming new neural pathways (neuroplasticity) to replace any that are gone, I may never. I’m being as realistic as I dare. My goal right now is to eventually stand and be able to take a shuffling step with my old walker/rollator. When and if I get there, I’ll set a new goal. If I never reach that goal, just the relaxation, comfort, and ability to sleep through the night that the baclofen pump gives me is worth it.
That was the good; now for the bad. I have a hockey puck sized metal pump inside me with a catheter that goes inside and up my spinal canal. In case you missed it, there’s a surgery involved, so there’s risks involved. Here’s mine (yes my intestines were full of gas, etc that day).
See that port in the middle? Every so often the pump has to be refilled via a needle, like this.
It looks intimidating, but really it’s not a big deal. The pump is right under the skin so the needle just breaks it and clicks into the port. In the picture, the needle looks like it’s standing up in me…but it’s not in “me”. If you absolutely can’t stand needles, you need to consider this. The battery has a certain lifespan and when it’s up, the whole pump has to be replaced, so this is a lifetime commitment to regular surgeries if you decide to continue the therapy. The pump also has to be programmed until the correct therapeutic dose is reached. You need enough tone for your muscles to be useful, but not so much for the spacticity to return. It’s been about 10 months since I had mine put in and we’re still fine tuning. Programming is done with a tablet and an attached sensor that is placed on your skin over the pump. None of this is really bad, I’m just trying to make the point that there’s a lot to consider and it’s not right for everyone.
Finally, I feel like I need to make the point that this isn’t a cure for MS. This isn’t going to give me the ability to walk back. If I ever get back on my feet and take a step again, it will be because the ability was there and being blocked by spacticity. All the pump does is remove an obstacle to something that is either there or isn’t. I don’t know if mine is there, but I intend to find out.
There’s a lot more than this overview provides. I am apparently sensitive to intrathecal baclofen too and what should have been a 1 night stay in a regular room after surgery, turned into 4 nights in intensive care, but that’s another story (I keep saying that, don’t I?). If you want to know anything specific, just ask.
