My left hand

I am still waiting for my first dose of the oral MS med. In the meantime, I am wrestling with a splint on my valuable, only-working left hand.

A horse! a horse! my kingdom for a hor…er, thumb!

I am still waiting for my first dose of the oral MS med and the requisite 6-hour observation immediately after.  In the meantime, I am wrestling with a splint on my valuable, only-working left hand.

At the beginning of this episode, I started to get pain in my left wrist.  After I complained several times to OH, he finally got me to make an appointment with The Quarterback. (I tend to down-play any health anomaly at first aand maintain that doctors are too important to be bothered.  Notice anything about that? Avoidance = Denial!)

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Fearing carpal-tunnel, I was relieved to hear her tell me it was tendonitis.  She wrote me out aprescription for 6-weeks of hand-therapy and another for extra-strength ibuprofen.

My-splint

The next day, we drove up the freeway a few exits and pulled into the parking lot of a local gym.  The hand therapy office was upstairs.

I was still in my wheelchair so I had called ahead to ask about accommodation.  I was assured that I could use the elevator in the gym.

But instead, when we got there, we were confronted with the first of two "lifts" to get to the top floor. This was "the elevator." I wheeled into the first, which was only big enough for me and my chair.

Once OH had made sure that my brakes were locked, I pushed the button to raise the platform while he climbed up the handful of stairs and met me at the lobby level.

I rolled out of the cage and OH wheeled me over to the taller lift, and we repeated the procedure. 

It was sooo slow and shook violently as I reached the top. I was annoyed by that but OH told me later that waiting for me and suddenly seeing that, "took 10 years" off his life.  [Awww, so sweet!]

He pushed me into the therapy suite and we were directed to the small office at the back.  By this point, I was not impressed at all and muttered to OH that in my opinion, I only needed to come this one time, and then could do the exercises or whatever by myself.

He told me to reserve judgment and we entered the office.  And met the two very trained and super friendly therapists.  I will keep the appointments.

I learned that the tendon that runs from the middle of my thumb to my elbow had become swollen and inflamed.  Amazingly, the tip of my thumb, and the rest of my fingers are controlled by other tendons.  The therapy consists of gentle stretching and heated massage. 

Then my hand was traced and the markings were transferred to heavy plastic, cut out and warmed in water until it was pliable. 

Finally, I was instructed to rest my elbow on the table in front of me and hold up my palm, bend my finger to my thumb in an "ok" sign, where the warm plastic was wrapped around my thumb and wrist.

The plastic hardened, straps were affixed, and I've been instructed to not take it off for six weeks, except for temporarily, to gently wash, stretch, and massage.

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Goldil-OCTs and the three chairs

Last week I went for my Optical Coherence Tomography (OCT) test.

Last week I went for my Optical Coherence Tomography (OCT) test.  The tech was running way behind, we were told.  She was accidentally double-booked, we were told.

As I sat there, I discovered that I was glad that this test was not a “fasting” test, glad that I was not waiting on an empty stomach.  [So sad that this is my first thought.  Welcome to our sandbox!]

Probably when I see the test results, I’ll be way more fascinated, but right now I am struck more by how awkward it was to transfer myself from my wheelchair to two different chairs and a swivel stool, then back to my wheelchair 45-minutes later.

The test started with me plopped down in a comfortable, padded executive chair and holding up a “mask occluder” [ha! It took me ten minutes to find out what that was called!] over each eye.

AMASK-T
Executive-chair

First covering one eye, then the other, I read the eye chart lines down as small as I could go.  Additionally, after each time I covered the opening with the pinhole screen and tried again.  [Curious, but this helps!!]

Next I switched back and forth between each eye fixating on the center dot of an Amsler grid so the tech could determine the accuracy of my central visual field.

Then I lurched over to a basic, hard plastic office chair facing the far wall with another eye chart.  Again using the occluder I read aloud the increasingly smaller letters on that chart.

Visitor-chair
Rolling-stool

Finally, I pitched forward to a revolving stool.  I knew it swiveled but didn’t realize how hard that would make it to lean on while shifting over.

I suddenly had visions of me as a character in an I Love Lucy episode [do I have this series on the brain? (see here)] trying to stay on the stool as it tried to spin me off!

When I finally got seated and righted, my left eye was taped closed.  I was told to lean slightly forward, rest my chin on the chinrest and press my forehead against the camera frame, then fixate on a pinpoint of blue light.

The tech told me I could blink whenever I wanted, just to keep staring at the blue light, that this part of the test would go fastest if I just held still and stared straight ahead.  First one eye was tested, then the patch was switched to the opposite eye.

Finally she removed the eye patch and put “numbing” eye drops in both eyes.  She then gently placed the rounded tip of a tool that looks like a pen directly on each cornea to measure the intraocular pressure of each.

Next test will be a dermatologist for skin-cancer screening.  [I suspect all these tests are required because of things a few patients contracted in clinical.trials–to make sure those things are not already “on board.”]

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My lil’ meningioma

After my routine MRI last year, the resulting report noted at the bottom that what was previously thought to be a white matter lesion along the right, front part of my brain, consistent with MS, was actually slowly growing larger and thus more likely “a small meningioma.”

After my routine MRI last year (8/17/2010), the resulting report noted at the bottom that what was previously thought to be a white matter lesion along the right, front part of my brain, consistent with MS, was actually slowly growing larger and thus more likely “a small meningioma.”

My new neurologist wanted me to have another MRI, at her facility, which I did on May 4th, and then OH and I met with a neurosurgeon to review these scans.  He told me that yes, it definitely looked like a meningioma.

[I asked if he really could tell it was a benign tumor without doing a biopsy and just by looking at it; he assured me that he could—something to do with smooth versus jagged edges, etc.]

He suggested that I not wait until it got any bigger to decide what to do about it.

[I asked if I would for sure have to deal with it eventually; he replied that yes, since we knew without a doubt that it was growing, albeit slowly, sooner or later I would have to deal with it.]

His recommendation was that I have one-time, outpatient radiosurgery, a “Gamma Knife treatment,” while it was still small enough to do that; otherwise, once it got bigger, he’d have to open up my skull and remove it. Brain surgery!

So that’s what we decided to do (and by “we” I mean “me”!).

The night before, I agreed not to eat or drink anything after midnight. Early the next morning, we arrived at the hospital, I in my wheelchair, wearing loose, comfortable sweats and carrying my morning meds and vitamins. 

The nurse that we had met the day before now met us at the procedure area and reviewed my various pills, then told me I could have something to eat after the head frame was attached, and I’d had the MRI that would show doctors exactly where to aim the lasers.  I could take them at that time.

In Gamma Knife, a frame of aluminum alloy is attached to the head, which looks heavy and a little scary [see pictures below; I tried to get the pictures of myself taken with the nurse’s cell phone, but these give you an idea].  But the skull itself is not drilled into, just drilled up to, and the frame is only about 6 lb.

 

 

1. Head Frame for Radiosurgery

2. Head Frame Attached to Live Person (not me!)

 

Before attachment of the frame, an intravenous (IV) line was inserted at my left wrist, and I soon felt very calm, warm and relaxed.  Ah, the Ativan® fog.  Good stuff.

Next I received four injections of a local anesthetic, two in either side of my forehead and two through my hair in the back of my head to numb the spots where the frame would be attached to my head.

This was when it became more traumatic for OH than for me.  He was watching me, observing all the shots, but once injected just under the skin, the anesthetic made golf-ball size swellings at each injection point.  He was morbidly fascinated but couldn’t tear his eyes away. [I got the story later but at the time was in a blissful haze, feeling little to no pain.]

Then the frame was attached and the pins that held it on firmly were tightened by hand. [I guess some doctors use a small drill but my nurse said the sound of it caused some patients anxiety.  Imagine that!]

Once the frame was secured in place, I was wheeled upstairs to an MRI machine and got a quick scan.  This picture and precise measurements were taken to pinpoint the location of the tumor.

 So after going for the scan, I was wheeled back to the staging area to eat, drink and nap until it was show time.   Since I was the only patient scheduled for Gamma Knife that day, OH was offered the second bed in the staging area, and since we’d been up so early that morning, we both drifted off to sleep almost immediately.

Meanwhile, my medical team – including a physicist! – were working together to determine the appropriate radiation dosage and develop a computerized treatment plan.  When they were done, the nurse came back to get me. It was “show time.”

I was wheeled into the treatment room, transferred myself to the unit’s bed and my head frame was locked into position.  The nurse had explained that while the machine looked like an MRI machine, the actual procedure was so quiet that patients often asked, when told it was over, “Did you even do anything?”

Now, she leaned over me and said, “What kind of music do you like?”  We settled on The Beatles and she told me I’d be lying down for about 45 minutes, but that there was a microphone through which I could talk to my doctor, so if I needed to take a break, to just let them know.

She started the music, left the room, and I drifted in and out of Beatles’ songs for 45 minutes.  I never needed a break.

Then she was back, helping me transfer myself back to the wheelchair, and wheeling me back to OH in the staging area.  The head frame and the IV were removed and there was minimal bleeding from the pin sites in my forehead but I shouldn’t get them wet for 24-48 hours.

Before we left for home, she admitted to me that there was a small chance that a bit of my hair in the front would fall out temporarily a few days after the procedure but that it would grow back.  As far as required pain medication, she and the doctor both told me that I shouldn’t need anything stronger than regular ibuprofen.

She also told me that, in the remotest possibility some healthy tissue was also damaged by the radiation, losing its ability to regulate fluids, for example, the neurosurgeon might prescribe a mild steroid to treat. We should keep an eye out for mood changes or sudden bouts of irritability that might indicate that. 

Yeah, right.  Like I’d be able to tell the difference. :) 

We were home by 4:30 that afternoon wand I had taken the next day off from work just in case.  I slept soundly that night and the next.  I had a little headache pain the next morning but nothing since, and sure enough the ibuprofen handled it.  So that was my big adventure last month.

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Something else in my head

My neurologist tells me I have “transitioned” to Secondary-Progressive MS and my MRI notes an increase in one lesion that may instead suggest a benign tumor.

In July, my neurologist told me at my yearly appointment that I had transitioned to Secondary-Progressive MS (SPMS) and that the medicine I'd been self-injecting was obviously not slowing my progression so I could discontinue the daily shots and he then ordered my regular MRI.

So in August, I went in for this scan, first without then with an injection of contrast dye. 20 years on with this disease and I am so used to the procedure I even nodded off at one point which is quite a feat because the banging and noise is loud.

I have online access to my partial medical records, not the scans but the summary reports, so a few days later I got a reminder that the report had been dictated and was posted to my online account.

When I read it, it seemed pretty straight-forward: compared to previous scans, "there has been interval progression in disease with interval development" of multiple new lesions (as I'd expected).  In addition, several of the previously noted lesions "appear to have increased in size." (crap)

Still, pretty much as expected UNTIL I got to the bottom: " …there is a 1 cm presumed extraaxial  enhancing lesion seen along the right frontal convexity which appears more prominent in size in comparison with prior examination and may represent a meningioma." (What is a meningioma and how long have I had it if it's increased??)

Now my last MRI was Feb. 2007 and 'meningioma' is not mentioned (maybe not yet by name?).  And in my Nov. 2005 MRI is a note that my largest lesion appears to be 5mm in the right front of my brain (oh, maybe this is it).

I switched over to the National Library of Medicine's Medline website (http://www.nlm.nih.gov/medlineplus/) to look it up.  This is what I read:

"A meningioma is a tumor that arises from the meninges — the membranes that surround your brain and spinal cord. The majority of meningioma cases are noncancerous (benign), though rarely a meningioma can be cancerous (malignant)."

I didn't know what to think, but went downstairs to ask OH what he thought.  Worried (understatement!), he insisted I make a follow-up appointment with the neurologist to look at the actual scan.

So I emailed my neurologist's nurse asking "What does the doctor think about this? Should I be worried or should I not be worried? Or should I not be worried yet?" (As an aside, I LOVE having this kind of access to my doctors!  It costs about $60 a year but is so worth it!)

She called me back and set up an appointment for early September, saying he was taking vacation that month but nonetheless would be coming into the office to see patients in the mornings.  I decided that if he hadn't called me immediately after seeing the scan results, he wasn't worried so I wasn't going to be either.

At the beginning of this month, OH and I went to see the scan.  And plain as day, we could see a mass about the size of the tip of my thumb.

My doctor immediately assured me that a meningioma is almost always benign, slow-growing and not a threat to the brain tissue.  He said that it was at an easily accessible location if we wanted to have it removed, but that the surgeon would probably not want to do it yet: it's small and slow-growing.

He recommended that, for now, we just keep an eye on it, that I have another MRI in 12-18 months to make sure its slow-growth isn't accelerating.

I let my GP know what was going on and what course of action the neurologist suggested.  Without hesitation, she concurred with him. 

So, we're waiting and watching and that's the latest from here! 

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Something else in my head

My neurologist tells me I have “transitioned” to Secondary-Progressive MS and my MRI notes an increase in one lesion that may instead suggest a benign tumor.

In July, my neurologist told me at my yearly appointment that I had transitioned to Secondary-Progressive MS (SPMS) and that the medicine I'd been self-injecting was obviously not slowing my progression so I could discontinue the daily shots and he then ordered my regular MRI.

So in August, I went in for this scan, first without then with an injection of contrast dye. 20 years on with this disease and I am so used to the procedure I even nodded off at one point which is quite a feat because the banging and noise is loud.

I have online access to my partial medical records, not the scans but the summary reports, so a few days later I got a reminder that the report had been dictated and was posted to my online account.

When I read it, it seemed pretty straight-forward: compared to previous scans, "there has been interval progression in disease with interval development" of multiple new lesions (as I'd expected).  In addition, several of the previously noted lesions "appear to have increased in size." (crap)

Still, pretty much as expected UNTIL I got to the bottom: " …there is a 1 cm presumed extraaxial  enhancing lesion seen along the right frontal convexity which appears more prominent in size in comparison with prior examination and may represent a meningioma." (What is a meningioma and how long have I had it if it's increased??)

Now my last MRI was Feb. 2007 and 'meningioma' is not mentioned (maybe not yet by name?).  And in my Nov. 2005 MRI is a note that my largest lesion appears to be 5mm in the right front of my brain (oh, maybe this is it).

I switched over to the National Library of Medicine's Medline website (http://www.nlm.nih.gov/medlineplus/) to look it up.  This is what I read:

"A meningioma is a tumor that arises from the meninges — the membranes that surround your brain and spinal cord. The majority of meningioma cases are noncancerous (benign), though rarely a meningioma can be cancerous (malignant)."

I didn't know what to think, but went downstairs to ask OH what he thought.  Worried (understatement!), he insisted I make a follow-up appointment with the neurologist to look at the actual scan.

So I emailed my neurologist's nurse asking "What does the doctor think about this? Should I be worried or should I not be worried? Or should I not be worried yet?" (As an aside, I LOVE having this kind of access to my doctors!  It costs about $60 a year but is so worth it!)

She called me back and set up an appointment for early September, saying he was taking vacation that month but nonetheless would be coming into the office to see patients in the mornings.  I decided that if he hadn't called me immediately after seeing the scan results, he wasn't worried so I wasn't going to be either.

At the beginning of this month, OH and I went to see the scan.  And plain as day, we could see a mass about the size of the tip of my thumb.

My doctor immediately assured me that a meningioma is almost always benign, slow-growing and not a threat to the brain tissue.  He said that it was at an easily accessible location if we wanted to have it removed, but that the surgeon would probably not want to do it yet: it's small and slow-growing.

He recommended that, for now, we just keep an eye on it, that I have another MRI in 12-18 months to make sure its slow-growth isn't accelerating.

I let my GP know what was going on and what course of action the neurologist suggested.  Without hesitation, she concurred with him. 

So, we're waiting and watching and that's the latest from here! 

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Advice to the newly reclassified


I personally think the only reason the doctors differentiate between
“types” of M.S. is to give the patient an idea of what is appropriate
to expect. But because of that, there are drugs that are only approved
for one “type” of M.S. so if a doctor wants you to try one you must
be classified as that type. And it really is such an individual, unique
disease: tell J. not to let the label dictate what she is or isn’t
experiencing.


This is a description from an MS Society booklet called “Managing
Progressive MS” that you can download for free at http://www.nationalmssociety.org/download.aspx?id=314


“Progressive MS manifests itself differently in everyone. Whether
your MS is “secondary-progressive” which followed a period of
“relapsing-remitting” MS or “primary-progressive” meaning it has been slowly
progressive from the beginning, it is important to realize that “progressive”
does not necessarily mean severe disability. But it does mean that there are
few or no relapses, and few or no recovery or remission periods when major
symptoms abate.”


Also see http://www.nationalmssociety.org/living-with-multiple-sclerosis/living-with-advanced-ms/index.aspx


With Tysabri (what you called “the chemo”), tell J. not to worry
about the “multifocal leukoencephalopathy” (PML) at this point.
It has been reported in only a few cases and always with people who were
currently taking other immunosuppressants as well. The National Library
of Medicine reports that “there is not enough information to tell whether
using it alone also increases this risk” and that is because it hasn’t
happened.

The Multiple Sclerosis Quarterly Review, published by the United
Spinal Association and the Consortium of Multiple Sclerosis Centers, reports
that there have recently been reports of liver dysfunction and two cases of
malignant melanoma associated with its use. But it also reminds us that although there continue
to be safety concerns, it is still “the most effective FDA-approved drug
for treating” M.S. Tell her to have
her liver enzymes checked with regular blood tests.


I got Tysabri once when it was first approved and was tired but fine (I always
think that except for this “pesky M.S.” our immune systems are
superstars). But the following Monday it had been pulled from the market
because of the initial PML discoveries. In the meantime I had an MRI and
there was little change so my doctor decided not to resume it for me when it
came back on the market. The bottom line is that there are both risks and
benefits to all drugs and also that chemotherapies tend to have less side
effects in recent times.It has really
helped some people.


Also, I can totally relate to being too proud to ask for help. When OH
was in the hospital and I was spiraling downhill, I was finally able to ask my
mom for help. She was so pleased to be able to do something,
so I think it might help J. to ask if she knows how helpless you feel and don’t
know unless she tells you what you can do that she would really
appreciate. My mom washed, folded and put away laundry, washed dishes,
scrubbed the shower and cooked meals for my freezer for months.


Learning to ask for help is one of the lessons this disease is trying to teach
me.

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