Saturday, September 14, 2013

Ken's Ordeal Part 9: An Answer--But Wait

Last time I wrote about the visit to orthopedics to have Ken's knee checked out.  Immediate surgery was recommended.  We have since confirmed that the surgery will need to be done at the Veteran's Administration Hospital in Milwaukee.  But doctors are disagreeing on that surgery.  I'm not talking about that in this post.  Maybe I'll write about that sometime in the future.  One thing at a time, I guess.

Our September trip to May approached.  This time, cost notwithstanding, we decided to find a motel with a pool.  Days at Mayo can be quite wearying and a sauna, hot tub, and pool sounded like a good end to a day at the clinics. We opted for the venerable Kahler Hotel.  The Kahler is a bit faded and worn, but still retains evidence of its former glory, and it includes several restaurants and a Starbucks.  It also has a tunnel (don't think dark and moist--think lined with pricey shops) that leads to the Mayo complex. 

Our room is on the 8th floor.  I'm sitting in it now, typing this blog post at a small desk.  The window is open and a cool breeze blows the curtains.  An exausted Ken is snoring softly a few feet away.  The room is tiny.  It might be the smallest room I've ever paid money to stay in, but the furniture is lovely and the small chest of drawers has a marble top.  The armchair touches the desk chair.  There is no room for it to be placed further away.   

When we first opened the door yesterday, we were quite surprised.  Well, we reasoned, we won't be spending time in here.  We'll be over at Mayo.  And unlike our previous trips, all appointments were on one day.  This visit to Mayo was mostly centered on the nerve compression and possible surgery to correct it that I mentioned two posts ago in Part 7.

The long drive from the east side of Wisconsin had been a rather quet trip.  There just isn't much to say at this point.  We were hopeful and a little awed the first trip here.  This was our fifth trip, and that expectation has worn off.

Ken was scheduled for an early-morning blood draw today, so he was gone from our room well before seven.  As usual when we come to Rochester, I had slept fitfully.  I tried to stay asleep after he left, but I was drawn out of bed by a golden halo of light that shone around the heavy drapes and directly into my eyes.  Pulling back the curtain I was greeted by blazing sunlight in a bright blue sky.  My spirits rose a bit.  "Gonna be a bright, bright sunshiney day..." -- I heard the song in my head.  May it be so, Lord, I said.  That is about as much prayer as I can manage these days.

The orthopedic surgeons are housed on the 15th floor of the Gonda Building.  The Mayo Building is at one end of a long, windowed hallway, always full of light, and the Gonda Building is on the other end of the hallway. "The Mayo Clinic" consists of both buildings, plus more.  The Mayo Building clinics are somewhat varied in appearance, but the large Gonda Building clinics all look the same.  Each one has striking artwork.  Each clinic area is lined with beautiful wood.  Each clinic is filled with dozens of comfortable chairs.  Each has a long reception desk with two or three people present to check folks in.  Sometimes it is disorienting.  Are we on the 5th floor, the 8th floor, the 15th floor?  

We are eventually called to Door A and we move down a gleaming hallway, past exam room doors that each have a bank of at least ten colored lights.  Some doors have nearly all ten lights lit, others one or two.   Blue, yellow, red....we don't know what the rainbow array signifies, but it is part of every Mayo Clinic exam room. We've started to joke about it.

Soon we meet the chief resident on the floor.  He, like all Mayo doctors, wears a suit and tie.  No knit golf-types shirts here, and no lab coats.  It strikes me that we have yet to meet any female doctors at Mayo.   

The pleasant and efficient resident looks about 19, but I know he must just look young for his age.  He tells me he is in the last year of his five-year residency.  He asks lots of questions, reviews Ken's MRIs, puts him through a series of painful tests.  Then he exits to find "the boss," an orthopedic surgeon specializing in hand issues. 

The boss turns out to be Indian or Pakistani, a small, dark man with an astonishing amout of hair product in his rather long curls.  His suit looks expensive and is beautifully tailored.  His shoes were amazing.  I look at them and then at Ken who mouthes, "See his shoes?" when the doctor is looking away from us.  The shoes are narrow and pointed, a highly-polished tan and cream set of wing tips.  They are gorgeous.  Ken later commented, "That pair of shoes must have cost more than all the shoes in our closet--yours and mine together." 

He repeats everything the resident just did, and he carefully examines Ken's hands.  He notes the deep divits (the resident called it interossei wasting) and the weakness, etc.  Both doctors agree.  This hand problem, and likely much of the hand pain, is due to compression of the ulnar nerve.  (That nerve we call the "funny bone" that hurts a lot when you happen to whack it just right.)  As we expected, he wants to surgically release the nerve. 

He also talks about shoulder surgery.  His description is complicated.  We are not sure exactly what is involved, but he says he will fix the shoulder and the elbow during the same outpatient surgical visit.  Each will be minimally invasive.  The pain should be reduced by at least 30% to as much as 90%.  He will start with the left shoulder and elbow and after those heal he will schedule the same surgeries on the right shoulder and elbow.  After much conversation, surgery is scheduled for September 26th.

We should be feeling better, because at least there is a plan and a partial diagnosis.  We aren't.  I am afraid to be relieved, and Ken is thinking about how the doctor told him that the surgery will only stop the deterioration from growing worse.  It will not restore hand function nor hand strength.  The nerves are dead and the muscles are atrophied.

Later he visited another section of the orthopedic clinic where he was given an ultra-sound-guided injection into his bicep.  This was the fourth time his shoulder or arm has been injected with cortisone.  It never helps, and he wanted to refuse the injection but the doctor explained that it was in a different place than before and if it helped, or even if it did not, it could help with a diagnosis.  The numbing agent never seems to work either, and the shots are always painful.  This one, Ken later said, was much worse than any of the others.  When he approached me, back out in the clinic lobby, his eyes were bleak and I could tell he was fighting tears. 

In a choked and muffled voice he said, "The only thing I was looking forward to this time was a sauna, sitting in the hot tub with you, and then a swim in the pool.  I can' t do any of that because of the injection.  Too much danger of infection."  He was frustrated and angry and I knew the tears were not about the pool.

We returned to the hotel for a quick nap, and we both went back to Mayo feeling somewhat better.  The next clinic was on the Mayo Building side, in rheumatology.  The rheumatologist has seen Ken before, and he ordered MRIs some time back.  There had been no follow up visit scheduled, a mistake on someone's part.  A different doctor had noticed and had insisted Ken have a follow up with the rheumatologist, even though no one really thought that there was much evidence of rheumatic disease. 

The rheumatologist has an interesting Australian accent.  He also wore the Mayo uniform of a white shirt, suit and tie, but he couldn't have looked more different that the surgeon we'd met earlier.  His shoes were scuffed, and his worn tweed suit coat gapped when he sat down.  He had a rather abrupt manner, but he asked Ken detailed questions (many more than on the first visit two months ago).  He looked at the lab results, reviewed cortisone injection results, pondered the list of prescriptions Ken has tried.  The MRIs he had ordered were of poor quality because Ken was in too much pain to lie still, but some things were visible. 

Gazing at the MRIs, he looked perplexed.  He made a phone call to someone who he said was "a whiz at deciphering these things" and he told the woman at the other end of the phone that he wanted her advice on a "very complex case."  After several minutes of conversation that was a foreign language to us, he thanked her, hung up, and turned to Ken.

"I'd cancel the surgery you have scheduled for the 26th."

"What?"

"I agree, your symptoms indicate compression of the ulnar nerve.  But even though your lab tests show no inflammation, and even though all the different steroids you have been given, both shots and pills, have done nothing, I think the nerve compression is caused by widespread joint inflammation.  My colleague over at the MRI lab agrees. She says there is 'inflammation everywhere.'  I suspect a raging case of rheumatoid arthritis or something similar."

In about two seconds my mind travelled back to the three rheumatologist Ken has seen in three different clinics before ending up at Mayo.  This one is the fourth, and this is our second visit with him.

"How can that be...?"

"In very rare cases, we see this.  Steroids don't help.  Labs show nothing, but inflammation is there.  We must do some more tests.  No sense having surgery if the nerve compression is due to inflammation and some sort of hidden rheumatic disease process."

Ken and I nodded wordlessly.  Of course. 

He want on, "The symptoms fit, even though the tests do not.  Nerve deterioration accounts for the muscle wasting and weakness, but not the swelling you have.  I'm scheduling some very specific tests to check for different types of inflammation.  I'll talk to the ortho docs.  We will do these tests first.  If they do surgery, and the real cause is inflammation, they will only make things worse."

As I pushed Ken's Mayo wheelchair across the atrium to return to the Kahler Hotel, it was once again filled with the sound of piano music.  Evening shadows were long, and the beautiful space was mostly empty.  There was a smattering of applause, and somehow it sounded as though it came from a great distance, as the musician finished his song.  I felt invisible, alienated, small.

It seems so strange that nothing in these long months has been straightforward. We've lost track of how many doctors Ken has seen now and how many possible causes for various problems have been suggested.

We talked about how we almost didn't have the follow up visit at the rheumatology clinic.  We were grateful someone eventually noticed that omission.  Other than that, we don't know what to think. We are pretty numb.

We leave for home in the morning, and we return to Mayo for the tests on Thursday.

6 comments:

Terri said...

wow, rheumatoid arthritis makes perfect sense. I wonder if the next round of tests will confirm the diagnosis....and if it does, then maybe some real relief will be on its way. Prayers continue.

Robin said...

Wow.

PS (PSanafter-thought) said...

Sigh. No words.

Jan said...

How difficult this continues to be. Prayers.

The only thing I can say is that I was not diagnosed with RA for almost a year, because labs did not show any inflamation, even though symptoms indicated RA. My family practice doctor would not refer me to a rheumatologist until finally I documented the symptoms, which were progressively worsening. But all this was minor compared to poor Ken. Prayers.

Chris said...

Oh Dorcas! It was the same with me. It took a long time of worsening symptoms before they ever diagnosed me with RA. I'm praying whatever treatment they come up with helps in a maximum way!

Metacrock said...

Hey Doras,Metacrock here, good to see your blog again. Sorry to hear of Ken's woes. My brother had ulner nerve damage once and had to be operated on. His hand withered up becuase of the damage. Today, years latter his hand is normal. So it could reverse.