Ken, and our daughter, Kris, arrived home late last night from the latest Mayo excursion. I didn't take Ken this time because of scheduling conflicts. And it seems we have at least a partial diagnosis. And with that diagnosis, I'm trying to think towards the future. Having any diagnosis, after nearly a year, is a victory of sorts.
Yesterday they did a nuclear imaging scan that is aimed at locating inflamation in the body. This morning Ken told me that it was clear his joints were "on fire." He has rheumatoid arthritis, apparantly a "raging case." He is in the 10 to 20% who have a version of RA that does not show up with the usual tests and does not respond, even a little, to steroids.
I am trying not to think of the rheumatologist at St. Luke's Hospital in Milwaukee. Nor the one at the Aurora Clinic in Menominee Falls (he did mention rheumatoid arthritis, but did nothing except prescribe steroids that did not work and then abruptly resigned and went elsewhere). Nor the one at the Marshfield Clinic. Especially that guy--the one who announced with complete confidence that Ken did not have any sort of rheumatic disease but clearly had carpal tunnel syndrome and diabetic cheiroarthropathy.
Allow me a necessary digression for a bit. I have mentioned that Ken had a knee replacement done some time back, and it was one of the relatively rare knee replacements that turned out to be a total failure. Because of his high risk of infections, his serious "venous insufficiency" (lack of blood flow, mostly due to blood clots) and other issues, the orthopedic surgeon here has told Ken that he would not even consider taking the prosthetic out and putting in a new one. So he has endured a swollen and painful knee for over a decade.
Now, the swelling and pain have increased to an alarming level, so we had an orthopedic doctor at Mayo take a look, since we were there anyway. As I mentioned in the last post, he says the prosthesis is loosening from the bone and recommended immediate surgery. He also said that even though tests have shown no sign of infection, there coudl be an infection in the bone near the knee that could only be verified by taking a tissue sample during the surgery. He said "In our world we would assume this knee is infected until we rule it out."
Remember that back in spring Ken had his third bout with serious cellulitis (a leg infection)? He had a follow up visit with the infection specialist here. The knee surgery issue came up. The doctor's advice was "I agree with the ortho surgeon here. I absolutely do not recommend it. The complications could be dire, and there is no way of knowing if the next knee replacement would be any better than this one." He described several horror scenarios that I won't bore you with, but it may very well not end well at all if Ken has knee surgery again.
Additionally, as I wrote last time, the knee surgery would be done at the VA hospital. He did advise that if Ken decided to go ahead with the second knee replacement (frown and head shake) that he should be notified because of the serious danger of infection.
Ken decided to forego the surgery until he "couldn't walk anymore."
Back to Mayo. After yesterday's tests, the Mayo rheumatologist told Ken that the Rx he would give him would cause lowered immune system function. In short, if he gives him the Rx that he hopes will help turn off the inflamation, and thus reduce his excruciating pain and his ongoing joint deterioration, he could cause any hidden infection in the knee to enter the rest of Ken's body. He says it is absolutely imperative to do the knee surgery before anything else is done.
And here we thought the knee was a "side issue" at Mayo. And we are trying not to think of Ken's numerous bouts of infection and what could happen with an Rx that causes even more liklihood of infections.
He recommends the knee come out right away. Then, at some future date when danger of infection is past, he will try Ken out on a drug to deal with the RA. And then, if necessary, the surgery on shoulders and elbows to release the nerve can be done. He does agree with the dapper hand surgeon that there is clear nerve inpingment, he just disagrees on the cause. So the surgery that was scheduled for next week is now cancelled.
The doctor strongly suggests that the knee surgery be done at Mayo so that the team there, orthopedic specialist, infection specialist, rhematologist, etc. can work together to give Ken the most hopeful outcome. It is not, however, likely that the Veteran's Administration will agree. He did tell Ken that he would "say whatever I need to to try to convice them of the complexity of this."
Ken is calling the VA today to see if we can get an orthopedic surgeon there, or someone in VA administration, to talk with the doctors at Mayo. Either way, knee sugery must be done right away. In Ken's case, this may involve (even with all horror scenarios aside), weeks of recuperating and bed rest. But the decision is made. No knee surgery, no RA meds. So...
And as I'm trying not to think of the doctors who told Ken that this "isn't rheumatalogical," I'm also trying not to think of how we said, months ago, "This has to be something systemic. It sure seems like rheumatoid arthritis."
We must focus on the next step--somehow negotiating the VA system to get a doctor who can speak to a doctor at Mayo. And if the VA insists that the surgery be done in Milwaukee, getting a plan in place. If only every doctor we see didn't put in the notes, "....very complex case..."
But we have a possible diagnosis. For that, I am thankful. And I am thankful for those who are still thinking of us, praying for us, and reading these posts after all these months. (Not nearly as many, of course.) Thinking of all of you, some of whom have never met us in person, is overwhelming.
Sheesh. That's maddening, all those drs who told you it wasn't RA. I have 2 family members who have RA with no testable symptoms. Praying for quick surgery and moving on toward treatment!!!
At least there is some hope now! Maybe not that he will be completely cured, but that the meds they will put him on will ease the pain and prevent further damage.
Thank you, Lord, for providing doctors with the insight to see the real problems!
Perhaps the fact that every doctor noted that it is a "very complex case" will help with getting the VA to let Mayo deal with it.
As always, praying.
I will pray that it can be done at Mayo. I have had you on my mind for almost a year now. And will continue you both in my prayers and thoughts.
You are in my prayers
Looking back, I think that if I had had more extensive testing for my problems (completely unlike Ken's problems) I probably would not have endured 4 surgeries over the last 21 months, but only one more extensive surgery in the first place. None of these doctors I've seen claim to have seen three surgeries in a row fail. The good thing about Mayo is that they usually do more extensive testing than other places. There should be a money angle that should be in Ken's favor. Buy that I'm thinking about my last surgery which cost $50,000 total, but the other three added up to $50,000. Maybe if the VA can be convinced that in the long run, taking care of things correctly and in the right order, they can come out ahead money-wise.
Still praying for you both. Grateful for the diagnosis, maddening about the process to get there! The VA is such a good idea, just not the best when it comes to actually doing what many people need....we certainly need to fund it better. I do hope they see the importance of Ken following Mayo's procedural process and having the surgery there.
Still reading. Still praying.
Thanks to all.
Good points, Ruthie and Lois. Oh, I hope so! We shall see.
And Lois, I am so sorry all that happened. The medical world is maddening and a blessing all at once, huh? And you likely know this more than most.
Ken was unable to connect with the person he needs to speak to at VA today. Will try again tomorrow.
Prayers. Grateful for this diagnosis.
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