Learning New Words – All this and Arthritis, too?

I recently went to a new neurologist as I physically could not manage commuting in to NYC (see New Neurologist Visit).  As a result, I had to have a new set of MRIs.  I expected the usual “There’s been no change, blah, blah, blah.”  Last year, my neurologist told me that but mentioned I had spinal arthritis, quite normal at my age.  From the get go, Dr. F had said I might want to consider spinal surgery.  My first thought, years ago, was pure, utter terror.  I had a friend who on Thanksgiving Friday 1998, found a lump on his rib cage. He went to the ER that day and it was determined to be cancerous. Another lump was found on his spine.  It was operated on.  By 9 December, he was paralyzed.  His funeral was Memorial Day weekend.  When Dr. F broached the possibility again in 2017, she said it could possibly help but I would still have MS.  My response to her was that I have been told that I am an ideal candidate for laser eye surgery.  But…there’s always a but.  I would still need to wear readers because of my over 40 year old eyes.  What’s the point?  Would my mobility change?  I voted  no.

Despite my expectations, the new doctor left a message that she wanted to review my test and MRIs.  I had already received a call on the blood indicating that my B12 was a little high.  I’ve had that before.  The nurse also said my cholesterol was a bit high.  This was unusual and mildly alarming.  However, my husband’s was also high.  Aha, we had made three batches of Pati Jinich’s homemade cookies in a week and a half.  When I go off the rails, I do it definitively .  The cookies are made with three and a half sticks of  butter; in other words just about a pound and a tin of condensed milk.  I actually thought Dr. M was calling about my urine test.  I didn’t do it at the lab.  The last time I did one was at my gyn NP’s as we were fairly certain I had a urinary tract infection.  Hilarious is the word that comes to mind.  Not to be too graphic but it was challenging to collect, not fall or spill.  I also have bashful kidney or shy bladder. The lab was not happening.  They gave me a specimen jar.  Next, my husband would have to carry it it in.  My middle initial is P usually for Perfick! But all too often  Procrastinate.  We finally got it together along with a little brown shopping bag for Tom to carry it in.  LOL.  I truly believed and feared that I had something urinary/renal going on.  So, the phone call.  My blood is as previously indicated.  My urine is FINE!  Really? Really. However, Dr. M tells me that I have spinal arthritis.  Yes? But.  I have badly herniated discs.  There has been significant deterioration.  I hear the words “spinal surgery”.  I close down and tell her I have to discuss it with my husband.  This is just graceful politeness.  I always make up my own mind.  I am known for consensus and collaboration but I always, always make up my own mind.

Technology is a wonderful thing or maybe not.  Dr. M has said she will send me the report.  However, there is a patient portal.  I go on it and pull up the actual MRIs.  They are so ugly and so not me.  My philosophy has always been “I am very good at my job.  I know it.  I expect you to be very good at yours.  You don’t know how to do mine and I don’t know how to do yours.”  I used to argue with a friend of mine who wanted all the exact details.  Why?  Can you tell the doctor/hairdresser/dentist, “Wait, that’s not the right way!?” I do open the written report.  I am good at words.  I don’t like these. I pull a Scarlett O’Hara and “I’ll think about it tomorrow.  Or next week.” The report actually makes a kind of sense.  I have been deteriorating almost daily.  No one wants to acknowledge it, including me but there it is.  Spinal deterioration at least provides a rationale.  This, then leads us to spinal surgery.  Tom assures me that things have changed and it’s been almost 20 years since my friend had his.  Laser surgery is now common.  I read the report again.  Basically, it says that there has been no additional demyelination; no increase in plaques. Actually, there has been no increase in plaques since this started. However, I have significant myelomalacia(new word!) and nerve impingement.

I am going to get a surgical opinion.  I am terrified of it but what’s the worst outcome?  I can barely walk now.  My mother developed intense osteoarthritis and osteoporosis seemingly overnight.  So, this diagnosis also makes sense in that light.

It’s always something.  Once again, I find myself being my own care coordinator.

Has anyone else encountered spinal stenosis and had a positive surgical outcome?  Or is this going to be like cataract surgery and because I’ve reached this state of deterioration, anything is an improvement?

MRI, Blood, Family and Me

I was brought up with a rather healthy attitude to medical matters – fact of life, suck it up.  It works for everything but blood and needles.  My father didn’t understand that as he said I was a woman and bled.

Breast biopsy 2003 just before Christmas?  No biggy, just the worry.

Then this started.  And nobody could figure it out.  So, an MRI.  I went locally.  I read nothing about it in advance.  I knew people were scared of them.  I haven’t felt claustrophobic.  Again, just not allowed. I focused on this was a means to finding out what was going on. At that point in time I had been advised it could be brain tumors, cancerous or not, or maybe MS.  The brain tumors weren’t a happy thought.   I was given headphones playing jazz, not my favorite.  I played flute in my youth so music is burned in my brain.  I count beats all the time.  I find it a great help with life in general.  For example , I count as I swing my leg to get in the house.  Since I unconsciously count, I could tell if it was an alright if I counted steps when walking in 100’s; in 10’s I knew it wasn’t a good day.

The first MRI passed uneventfully except for the jazz. And of course, the contrast dye with a needle was best ignored.  It was inconclusive. Another one was ordered.  This time I found I could ask for different music.  I have a rock and roll heart but asked for classical.  It’s calmer.  This time they thought they caught the edge of a brain aneurysm. Fun.  They told me to be very careful until I could come in for a different view. Very funny. During that period my postal worker asked me to give him a ride to his appointment with the postal psychiatrist.  Being paranoid, he made us park around the block.  Not the brightest idea for two people who had falling issues. But the definitive “this isn’t a brain aneurysm moment” occurred  because the newspaper delivery man backed up at high speed on a one way street at 5:30 a.m. when I was leaving for work, turning right onto the one way street.  My life flashed in front of my face but all that happened was 6000 dollars worth of damage and I cancelled the paper.  Oh, and he kept on missing for quite some time. The MRIs were not definitive and I did have to go for the spinal tap – same positive, determined attitude.  Same result – non-definitive.

So I ended up with a diagnosis and an admission of this is what we call it when we don’t know what it is. My first set of MRIs took  me years to pay off and I was insured!

I began to be treated at an MS Institute in NYC.  There I participated annually through last year in research studies.   I was paid to take the MRIs. The MRIs are state of the art and I usually do at least 90 minutes. No music but earplugs and headphones. We discovered the contrast dye and I do not mix.  So, here’s the thing – I fall asleep during them.  I drift off.  Part of it is counting the beats are like counting sheep to go to sleep.  The other thing is when I was working, no one could reach me!  I used to rise at 4:30 a.m. so I was perpetually exhausted? Where else could I be covered with a comfy blanket, not get calls, emails or inquiries and have a lay down in the afternoon.  They were always calling in “you need to stay awake!”.  Last time though I was in a deep sleep but it was fine as I did not move.

 

My eldest cousin does not share my view.  I am told as children we were mistaken for twins. Odd, as he is almost two years older than me.  I saw it better when we were teens.  We both spent some of our most formative years with our indomitable grandmother.  Cuz and I live in different countries but email weekly.  I was surprised to find that he had an upcoming MRI and had to have some calming things.  I shared some of my hints and tips with him – focus on a positive health outcome, no one can reach you workwise, close your eyes before you go into the tube, focus on that womblike, heartbeat sound, breathe and distract yourself.

Of course, on the family thing blood tells.  His youngest brother and I shared a fear of blood tests.  Unless accompanied, he would go in the front and out the back.  Me?  I live on what our grandmother called “Put Off Street”.

Cuz was very much on my mind as I had another MRI yesterday.  Due to the new neurologist, I need new MRIs.  She cannot view the previous ones in the research study. Yesterday, I returned to the site of the original.  I know the drill.  They don’t make you gown up but I had on a little cotton sundress, no metal anything.  Big difference.  The first time I had MRIs here I could walk.  There was no spectral leg, stick or rollator.  The institute is equipped to deal with me.  There are orderlies and techs who can lift/drag me along.  Quite hilarious as there I am in the full tog -booties, pants, gown, braless.  Here, there were two tiny women and my husband wasn’t allowed in. Well, we did manage in a fashion.  The blanket was not up to snuff nor my shoulders.  I did get classical music which I found moderately annoying after all these years.  I did not nap, quite disappointed.

And now, Cuz and I both await results.  Any  day that is harder than the test itself.  You can’t count the beats