Thursday, July 26, 2018

Mayo clinic, part 2

I am out of pain.

It's temporary...I can hope for another four hours or so for the local anesthesia to stay with me.
Then, I can hope in another few days, or longest two weeks (!), the longer-term steroidal pain medicine will kick-in and help the pain exactly where the local is working right now- my stomach wall. This is what they call the nerve-block shots. I had two today, one above each hip bone, to work on the stomach wall nerves. It's a diagnostic tool; if it works, we know the problem is in the stomach wall. If it doesn't work, we know the problem is something else, something deeper inside. The fact that the local anesthetic worked is a good sign, but the real test will be to see if the steroid part of the shot will work for me.

(oh, and BTW, the shots were put into me directed by ultrasound. And in the OR, the ultrasound transducer fluid is COLD! I asked why they don't have those special warmers, and they said that the cold doesn't give an environment for bacteria like the warm does, so in a case of an injection, they prefer to use it un-warmed. Interesting!)

It's been quite an emotional roller coaster here...hoping to get appointments for all the consults I need lined up in one week, waiting for openings in the schedule. Yesterday was an entire bust of a day waiting on getting into the gastro doctor earlier, but there were no openings, and we had waited in the Gastro unit all day. Mind you, every unit and waiting room there is like a beautiful hotel lobby, with carpeting, free internet and computers available, big soft easy chairs galore, and even large jigsaw puzzles set up on tables for people to mosey on up to and just do parts. That's cool. We did parts of a few puzzles in different units already.

But it wasn't an entire bust. We met a very interesting Egyptian-American couple and talked to them for quite a long time.
Also I did more blood work that my doctor ordered. I didn't understand what it was for, but later in the day when we got home, and the results were posted on my Mayo patient portal, I checked them out. And guess what? They point to signs of Celiac disease! I can't believe we overlooked doing that test in Israel with all the blood work I had done. I went back in all my blood tests for the past year or so, and nope, we didn't test for that. It's not a definitive diagnosis, though. They recommend I do an intestinal biopsy to decisively diagnose. It turns out that the Mayo radiologists who read my CT & MRE saw signs of possible Celiac disease inflammation or Crohn's disease. The interpretations I got in Israel said nothing of the sort. And apparently my colonoscopy I had done in October wasn't thorough enough, the gastro here said a whole section wasn't examined, and that is where this inflammatory process is seen in my other scans. So, when I get back to Israel I have to redo the colonoscopy & endoscopy (JOY), and send the results to my team at Mayo for them to interpret and diagnose. I could do those tests here, but it is many thousands of dollars, and we are paying out of pocket, and it's free (or nearly free) in Israel.

I have a lot of tests to do back in Israel. A chest CT as well, to rule out reasons for my 2+ year chronic cough.

I see my primary care physician (Italian lady with thick accent) again for a wrap-up tomorrow. Thing is, we may not yet know if the nerve block will be effective until after I've left. I have open-portal communication with all my doctors here, I just write a letter and send it through the portal to whoever I want to speak to, and I hear back within a day or two (usually from the doctor's assistant, in consultation with the doctor). It's an awesome system.

I have to see what else she suggests I should really take care of while I'm here, if anything.
Turns out that as of yet I didn't get a surgical consult. I'd like to have one, to have another opinion about surgery, but apparently not many surgeons do the type of surgery I'm looking at (removing mesh/reconstructive surgery), and there isn't an opening until Mid August when I'll be back home already. I can call as many times as I want during the next few days to see if there is a cancellation, and I can possibly get in, but the chances are slim. That's a bummer, but everything is scheduled in the heavens... G-d is the Master of schedules, not us.

The integrative medicine system here is *amazing*. All the doctors are in close contact daily. Things get done in a timely fashion (usually). For example, I had the pain doctor today, then a pain specialist (not MD) training in coping with chronic pain (extremely informative!), then they did the nerve-block shots immediately thereafter, when it hadn't been previously scheduled. Everyone communicates with everyone. All recommendations from all doctors can be seen by anyone on that patients team. This system should be adopted world-wide, this is what patients need. I will post some pictures from the Mayo history museum at the entry level of the clinic, and you will see a little of what I mean.

They have an incredible three-week pain clinic program here. One gets physical therapy (totally individualized of course), and lots of mental training to basically reclaim your life. The pain specialist today told me in length about it, and gave me an entire shopping bag of reading materials and CD's. I could possibly consider coming back to do that some time. If necessary.

If the nerve-block shots work, I'll need to find someone in Israel to do them every three months or so. The long-term hope is that it can retrain the pain messages in my body to stop making pain. I feel it's not going to be so easy to find someone in Israel to do it (paid by the national insurance) on a timely basis, but I'll cross that bridge when I get to it. It's possible that keeping the pain away artificially can change the "pain loop" in my nervous system. That remains to be seen. We're not even sure if this is going to really work yet.

OK, here are some pictures from the museum, and one special one from today out on Silver Lake here in Rochester MN:

Dr. Plummer was really one of the most important founding members of the original Mayo philosophy,
as well as superb doctor. We believe his name should be part of the Mayo name, but somehow it isn't.
They mortgaged their HOUSE to get this microscope
for the clinic!

Not a great photo, but Lou Gehrig was diagnosed and treated here!
He is the one who's name is on ALS. They have a signed baseball and his
original uniform and glove!

Foundation blocks

This... so NICE.
In Israel, I have many many times had to
roll the big roll of paper at the head of the examination table
so the last patients wrinkles are not going to be under me. I always
thought it was so gross that patients have to do that.
Here, this sign is on every exam bed of whatever room you are invited into.
And there are cotton sheets...not a big roll of gray paper.
(yes, I know it's all about funding...)
This we saw today, from our a little battery-powered boat on Silver Lake, after light rain showers. It was breath-taking.



  1. Yes! This really sounds positive! Love and prayers fro a complete healing!

  2. I had written something and can't see it anymore. I am so happy that there are new answers and new horizons... You were getting none of that here. I pray for you. Healing hugs����