Monday, May 06, 2013

Ken's Ordeal Part 5: Waiting

If you wan to start at the beginning, click the link labelled "Ken's Ordeal" at the bottom of this post or in the sidebar, and scroll down.

There were many good, and likely life-saving results of the discovery and removal of the pheo and one of Ken's adrenal glands.  His blood sugars have stabilized.  His blood pressure is on the low side.  His heart tests are all normal.  There are no more "episodes."  The surgeon was pleased with Ken's "numbers" when he saw him.  He had no explanation for the pain, continued weakness, and so on.  He said, "I don't think it was due to the pheo.  You not only had fleas, you had fleas and ticks.  They just happened to show up at the same time.  I hope someone can discover what else is wrong." 

So the attempts to find a diagnosis continued. Some things that have happened are just too personal or painful to share on the Internet.  The last three months have become blurry in my mind.  There have been so many doctors appointments and so many tests that it is all starting to run together.  Some of the things I recall:

The visit to the original orthopedic surgeon, the one who had suggested the "back cement back in early January.  He said, "I'm so sorry, Ken, but in order for it to do any good, that surgery would have had to be done a month ago, and of course, we couldn't do it until the tumor came out.  It is too late now."  He did not recommend a fusion.  He is a remarkable doctor, and has been the most involved and aggressive (in a good way) of all the doctors Ken has seen.  He ran multiple tests looking for anything that seemed remotely possible as a cause for all the pain and hand swelling.  Nothing showed up.  Later bone scans showed osteopenia.  Ken has gone from 6:4" tall to 6'1". 

The visit to the endocrinologist.  She has been one of Ken's doctors for a long time and was the person who finally connected the dots and ran the test that confirmed that the accidentally-discovered adrenal tumor was indeed a pheochromocytoma.   But during a post-op visit, she was unconcerned about Ken's continued weakness and general feeling of illness.  She encouraged him to exercise more.  She did not have any ideas about what might be causing the continued severe pain.  Eventually, some other symptoms occurred which caused Ken to insist that she check his testosterone level.  It was "alarmingly low" she said.  Two weeks later she ran more test to see if the source of the problem was his testes or his pituitary gland.   She ran a scan to check for a pituitary tumor.  None was found.  She started Ken on a testosterone Rx, and told him he would feel better in about a month or two.  He's waiting.  It has been about two weeks so far.

The visit to the Emergency Room during Spring Break. This happened after a weekend of severe hand, shoulder and back pain. Ken said his pain was an 8 or 9. (He has never had pain at a 10 level, because he reserves that for "screaming in pain.") After watching him in agony for two days, we went to the hospital. We were hoping he could be admitted for some pain management. He did not get admitted.  He did get an intravenous line of Delaudid (thought to be about 6 times stronger than morphine.)  That reduced his pain to a tolerable level, but the drug had worn off before we got back home.  Thankfully, in another day or so he had returned to his "new normal."  That is a pain level of about 4 or 5, after using Oxycontin and a Fentynal patch. 
The visit to the rheumatologist in Marshfield.  The famous Mayo Clinic in MN is not covered by our insurance, but the Marshfield Clinic is.  It is large and has a good reputation for diagnosing mysterious ailments.  We drove several hours and met with a doctor who came into the room and announced, after a few questions and a few simple maneuvers with Ken's hands, "I know what you have.  You have diabetic cheiroarthropathy.  It is causing the limited motion and contractures in your hands.  There is nothing that can help with this. You also have carpal tunnel syndrome."  He gave us a pamphlet to read, and we left, feeling hopeless and defeated.  Only later, reading the pamphlet, did we learn that cheiroarthropathy does not cause pain.  Nor swelling.  Several weeks later he had tests for the carpal tunnel diagnosis.  They were, Ken said, "Terrible."  And showed nothing.

Our chiropractor does help with the back pain, but the relief is slight and temporary. 

A visit to a respected acupuncturist caused even more pain in Ken's hands, arms and back.  He could feel "every needle" and reported that two weeks later he could still tell exactly where they had been inserted.  They made the pain worse, not better.

Of course, we found another rheumatologist, who agreed that the diagnosis could not be polymyalgia rheumatica nor a result of the drug Simvistatin (both suggested by the rheumatologist at St. Lukes).  He ran more tests, which were inconclusive. He is assuming, for lack of something more concrete, that Ken has rheumatoid arthritis. He started him on an Rx for that, but says it could be a month to six weeks or more before any results are seen. It has been about three weeks. No improvement so far.  And he is leaving the clinic soon.

Visits to physical and occupational therapists have been painful and only slightly helpful.  The next visit is with a pain specialist. 

Ken has not been at work since before Christmas.  He is on disability insurance for the moment and we are trying to decide what to do.  We still think it is too coincidental that the pain symptoms and hand swelling occurred in the same week as the extreme adrenaline episodes. Doctors all say the symptoms are not related to the pheo.  We have joked, "Maybe there were fleas and tics and spiders too."  

And somehow they all showed up in the same week back in December.  It doesn't seem possible, does it?   

We are glad the "episodes" are history and that an accidentally high level of blood thinner led to a check for kidney stones--and showed a tumor.  We are grateful that the surgery went well and that those symptoms are all gone.  We are glad that Ken's drug list is a fraction of what it used to be.

But it was difficult to expect a return to life and function and be met with no answers to the debilitating pain.  I wish I had a happy ending. I wanted to wait to write anything until we had at least some positive news about the mysterious hand swelling and the pain in hands and shoulders. 

Some days are better. Some days are terrible. Today Ken could not lift his arms.  He is very depressed.  We are praying for answers.  We are waiting. 


R.A. said...

I've been eagerly awaiting each installment of Ken's story, as I've enjoyed your blog for a number of years and miss your writing. I'll continue to lift your family up in my prayers.

I suffered with debilitating pain for years and currently co-lead a support group for women with my condition (endometriosis), so I know a little of what Ken is going through, especially with the frustration with doctors (one lady consistently put me on antihistamines when I was losing my hair and too weak to stand up!!). Please just know you're not alone in that experience; sometimes feeling like you're the only one with a "mystery illness" can be very disheartening.

One idea (and forgive me if it wears you out to hear "one more suggestion" as to what it may be! I know what THAT is like too!) is food allergies. I know it sounds like a stretch, but my disease is hormonal and intricately connected to gluten and dairy allergies. When I read about Ken's testosterone levels that was my first thought. Gluten, soy, dairy and sugar - these are all foods that can seriously effect hormone levels if a person has a sensitivity or allergy. If Ken doesn't have the heart for one more test (at a food allergist's clinic) then simply an at-home trial of no dairy/gluten for two weeks could show if that's one of the driving causes or not. I know that people with both fibromayalgia and MS have had quite a bit of success cutting these things out of their diet too.

But again, if that's too overwhelming to even think about right now, I completely understand. I only suggest it as a potential aid and not to burden you guys. I know what you guys are going through!

May the peace of Christ be with you today. Praying for a pain-free day for Ken! <3

Chris said...

Oh Dorcas!

I had no idea you two were going through all this! My heart goes out to you, and I'm praying for you and Ken in the hope that you will get some answers and some relief. I know it has to be wearing on both of you!

I have no answers or possibilities for you, just love and prayer. Ken sounds like he's going through hell and has been for quite some time. You sound worn out. I'm so sorry you have to go through this.

I know it sounds trite to say "Hang in there" when you have no other choice. Just know I'm pulling for both of you.

Much love,


Deb said...

This is so frustrating! I get weary of physicians who act like demigods!! My prayer is that the true answer will become clear and Ken will find healing and relief.
God's grace and peace surround you both. <3

LoieJ said...

Although I'm married to a physician who is very thorough, I know that some just aren't. I've been to some of those, specialists who hardly ask any questions and, in two cases, never even touched my body to check me. I think that in the future I'm going to be quite a b__ch if I run into one of those again. But most of the time, you don't realize that you aren't getting the full extent of the history and physical as it should be done until later when you find yourself going down a different, but more correct path. I always wonder if there isn't some way to get back to those docs and say, Hey, You Blew It Bigtime.

But my ranting isn't helping you. And all I can do for you and Ken is to pray for you to find relief and guidance. And I will keep you in my prayers.

Crimson Rambler said...

oh Dorcas. Not a single word of advice to offer, nor a treatment to recommend from here -- but keeping you both in my prayers and hoping some day soon to read "Part 6: SOLVED!"

Dorcas (aka SingingOwl) said...

Thank you, RA. I talked to Ken about this. Looking for a food clinician today.

Faith Hope and Cherrytea said...

adding my prayers. have been missing you at rev gals so clicked over when your name popped up on the sidebar.. so sorry to hear all this.
I live with rheumatoid arthritis [discovered via blood testing] after I couldn't lift a milk jug for pain and swollen hands and I know the sense of loss and frustration .
TY for sharing so we can join together before God on your behalf. Much love,