The Mayo - A week of learning

In my last post I told you that we have decided to go to the Mayo Clinic in Rochester Minnesota to get help making a decision on the best treatment for Brandon's scoliosis and osteoporosis.  We have two very different recommendations for surgery, both of which are major surgeries for Brandon to repair his scoliosis.  

Since my last post the Mayo has been incredibly helpful.  They called and gave me options for dates to come to Rochester Minnesota and I was a little shocked that the dates offered were so soon.  I was also surprised that we will be in Minnesota for at least 1 week for assessments.  The Mayo has called almost daily since the United medical director called and made the referral.  The best call was the Friday before we left when a patient relations representative checked to see when we are arriving, what hotel we are staying in and then told us she would meet us in the lobby and take us to our first appointment.  I have to say that was a big relief and one less thing I have to deal with - finding the office for the first appointment at 6:45 am in this mass of building called the Mayo Clinic.  Two weeks ago I drove all over Austin getting medical records and Cd's with radiology films.  I finished sending medical records to the Mayo.  But I had another conversation with the Mayo before we left about records I didn't include.  They asked for me to bring them.  I am not packing another 15 pounds of records so I scanned more documents.  There really isn't anything left that is not now in a PDF file.  When we got to the Mayo they still asked me to walk around with some of the records in hard copy just to make sure everyone had what they needed.  We are a long way to go in this country to have electronic medical records.  It makes it much harder for people like me and Brandon trying to have as much info available for better health decisions and better outcomes.   

Brandon and I left Sunday evening for the direct flight to Minneapolis.  Minneapolis is about 1 1/2 hours from the Mayo which is located in Rochester.  Luckily my friend Carrie Coleman just happened to be on the same flight and we booked our seats together.  She helped us make it to our shuttle to Rochester.  We didn't get to our hotel (Grand Kahler) until 1:00 am and then to bed by 1:30 am.  This was good because Brandon was only supposed to get 4 hours of sleep for the EEG they wanted to perform the next morning.  That also meant I only had 4 hours of sleep.  Rochester just had is first major snow and we came in while it was snowing.  Really it hasn't stopped since we have been here and it hasn't been above 32 so the snow is staying.  The Grand Kahler has an underground walkway so we don't have to walk out in the cold and all the buildings connect.   The hotel is a great location but probably could use a little upgrading.  There are new hotels being build all around the Mayo.  

Monday we met Brandon's new best friend Christel (Mayo assigned us a patient representative from the UHG Spine Program) in the lobby of our hotel at 6:45 am.  The first day was a day of meeting with our lead internal medicine physician who will put an entire plan together for Brandon concerning his spine surgery, scoliosis and genetics.  Then Brandon had a bone density test, spine imaging and an EEG. Brandon has developed an infection at his gtube site so there was a little extra time figuring out treatment.  It was a long day but ended around 3:00.  Brandon and I went to eat and then to bed early. 

Brandon getting ready for the EEG and with his new BFF Christel our patient representative 

who took us to all the visits.   

THE BONES

Tuesday was all about the bones.  But first we had blood tests and Brandon was on a strict diet for the blood tests the night before.  After the blood tests we had breakfast and then met with the endocrinologist to go over the results of the done density tests.  The good news is the highest number for Brandon's bone density went down to -2.8 (the high previously began was -3.7).  Still osteoporosis, but much better results.  The other good news is the lumbar spine overall score is 1.8.  Major progress.  The doctor would like Brandon's highest score to be below 2 before having surgery.  The other news is that there is no treatment approved for men, especially men below age 50 for bone growth beyond 2 years total.  That means once we have completed forteo we will have to move to  different stabilizing treatment. The doctor recommends prolia 60 mg subcutaneous injection twice a year after forteo.  Prolia will help him gain further bone density slowly over time more than Reclast.  If Brandon doesn't have surgery within the period of Brandon using forteo (which is preferred), then surgery cannot be performed until after 6 month from an injection of Prolia.  They are also watching new drugs soon to be approved, but have not seen a change in allowing more than 2 years of treatment.  

Our second visit was with an integral medicine doctor specializing in eastern medicine.  We both really liked her.  She wanted to check for drug interactions with some of the medications and supplements Brandon is using.  The main recommendation for Brandon is to stop using Vega his supplement we use as a base and change to active probiotics.  Here are her recommendations:

I recommend switching to whole foods, whenever possible.

In 2018 the Clean Label Project, a nonprofit organization that examines labeling safety issues, tested 134 protein powders from 52 top-selling brands. They found that virtually all of the 134 products tested contained detectable levels of at least one heavy metal and 55 percent tested positive for BPA. Overall, plant based products fared worse than whey based products. This included the Vega brand, which was ranked poorly and was listed amongst the 5 worst brands. A 2010 study by Consumer Reports of 15 products found arsenic, cadmium, lead and/or mercury in samples of all the 15 powders tested, a few in excess of the maximum USP acceptable intake.  

Regarding Multivitamin Supplements - The worst brands and products  in the Clean Label study: Garden of Life, Organic Shake & Meal Replacement Chocolate Cacao Raw Organic Meal; Nature’s Best, Isopure Creamy Vanilla Zero Carb; Quest, Chocolate Milkshake Protein Powder;

360Cut, Performance Supplements 360PRO Whey Chocolate Silk Premium Whey Protein; Vega, Sport Plant-Based Vanilla Performance Protein.

 

Best overall (but still tested positive for contaminants):

Pure Protein Vanilla Cream 100% WheyPerformix Pro Whey Sabor Vanilla Protein with Amino BeadsBodyFortress Super Advanced Vanilla 100% Whey Protein BioChem Vanilla 100% Whey ProteinPuori PW1 Vanilla Pure Whey Protein

 

Regarding probiotics: Overall, I highly recommend probiotics obtained form whole foods, such as kefir (Nancy's kefir is one example), pickles, sauerkraut, kimchi, kombucha tea, or miso.  

There can be substantial variability between probiotic supplement products based on manufacturing methods, storage, and species-related or strain-related differences. Generally, look for active or live cultures on a label, with colonies in the 10-20 billions. The best supporting evidence, generally speaking, is for Saccharomyces boulardii or Lactobacillus GG. For functional constipation Lactobacillus reuteri DSM 17938 () - 200 million colony-forming units daily for adults can be considered. For irritable bowel syndrome, Bifidobacterium infantis 100 million live bacteria daily can be considered.

 

I hope that helps anyone on supplements or probiotics.  

Brandon in the spine clinic

THE SPINE

Wednesday was all about the spine.  We saw the spine surgeon first.  Some new information.  The surgeon compared spine xrays from 2007, 2014 and to the current xray done Monday.  When you look at these comparisons it appears that the 2007 and 2018 xrays are similar (49 and 51%).  The 2014 xray may have been in a different position than the others.  Basically it is very hard to confirm that Brandon has had significant decline.  In addition, the surgeon here believes it is possible Brandon has had a fracture at the upper portion of the spine and probably due to osteoporosis.  It is hard to see on the film, but two physicians here believe it is possible.  They are recommending that an MRI be performed on the entire spine so we can clearly see if there is a fracture in this area or any other fractures.  If there is a fracture Brandon's surgery will need to have a rod placed in Brandon's spine above the fracture and all the way to the pelvis if or when we move forward with surgery.  The surgeon here believes that the plan from Dr Viere in Dallas is the better or the two options.  He did not agree with the surgeon in Houston's recommendation.  Here is what I gathered from the conversations:

1. Dr Viere's (the Dallas surgeon) approach for surgery more closely aligns with the Mayo's recommendation. He was the one with the more extensive surgery. However, if Brandon does have a fracture at the upper part of the spine a rod may need to go down almost the entire spine and fused to the pelvis. Even more extensive than the one recommended by Dr Viere.
2. They do not believe we should move forward with surgery unless we can confirm that Brandon's scoliosis is declining. Based on various x-rays it is unclear. They recommend following his back using the same machines for x-rays and the same approach to take the x-rays (i.e. hands to the side, hands above, standing straight, etc).
3. Surgery is not imminent unless we see a decline (that would include any fractures).
4. They recommend that Brandon get an MRI of the spine (also Dr Vere's recommendation) but different from Dr. Viere they want the MRI for the complete spine and determine if there is fracture at the upper part of the spine or any other part of the spine. They are suggesting the MRI be done within 1 month of this appointment. I will  ask Dr. Viere to do these in Dallas.  
5. Brandon has scattered degenerative arthritis throughout the spine and abnormalities in the hips. This appears to be normal for Brandon due to his osteoporosis, but not normal for a healthy young man of his age. I will ask them to continue to monitor the hips.
6. Brandon then saw an OT and a physical medicine doctor who recommended Brandon have physical therapy to work with Brandon's lower extremities which will support the spine after surgery. Brandon's legs, feet, etc are spastic and need more flexibility. They have recommended no more than 10 pounds for lifting, fall prevention since it appears Brandon has had multiple fractures, and a few other precautions for him to remember.  In  addition, they recommend light weight lifting and walking 30 to 40 minutes 3 days a week.  

That evening we had to have some better food - gluten free, almond milk etc.  So we ventured out thanks to Uber and went to the local People's Food Co-op.  Loved it.  It is similar to a small Whole Foods.  When we left it was snowing again.  

Neurology

Thursday was all about neurology and genetics.  Brandon was fortunate enough to meet with neurology for this visit and go over his medicines and diagnosis.  The neurologist agreed to Brandon's medicine but also made a suggestion of a new medicine to consider in the event we decide to move.  In addition, he ordered a new more defined MRI of the brain.  We will do this Friday morning before we leave here.  

Genetics

This was the longest appointment because we have so many tests already done for review.  I think it is the consensus from all the doctors that Brandon has an underlying genetic condition impacting the bones and vitamin D absorption.  But none of the obvious ones identified in his chart can explain his condition.  They are running 1 additional genetic test, but they are also going to contact Baylor and download Brandon's complete genome report.  In addition, Brandon signed up for a research study for patients like Brandon who have not found a diagnosis through any other method (genetic, metabolic, etc).  The study is looking for more ways to diagnose patients through whole genome sequencing.  They will continue to work on Brandon's case until they find a diagnosis.  This is paid through the Mayo research funding and could last for years.  

Ready to Come Home and Brandon's Birthday

Brandon is a little homesick and ready to come home, but the only thing keeping him from really complaining loudly is that we have scheduled to meet with another Beatles fan we connected with who has met 3 of the Beatles.  He is looking forward to that tomorrow night in Minneapolis.  We come back to Texas on Saturday staying with Carrie tomorrow night.  Then Brandon turns 26 on Sunday.  Happy Birthday Buddy.  

This says it all for the week.  

The Mayo

Lastly, I cant thank the Mayo team here enough for all the help they have provided this week.  Squeezing appointments in for the week, meeting us and taking us to each appointment, finding the right physicians to meet with during our time here so we can make better decisions.  Everyone has been very helpful, know their stuff, made sure we don't have any holdups and going that extra mile.  I feel like we have a good plan. I am much less stressed than I was before I came.  I also feel like I have a team here to help in case we get stuck again.  All round great customer experience.  

It was a memorable this week as the nation celebrates the life of George Bush.  George Bush and Barbara Bush were major supporters of the Mayo Clinic.  In fact, Barbara Bush was on their board.  Many great stories about them this week here and a small memorial on one of the floors where Brandon had many visits.  This added to the fact that George Bush signed the bill allowing people with disabilities equal rights so people with disabilities could have the same education and work at jobs equal to their peers.  He was a man who devoted his life to public service and Brandon has benefited from his efforts.  

Mayo Clinic statement concerning Former President George Bush

That is all for now.  Thanks everyone for supporting us as we stayed here at the Mayo.  Looking forward to being back in warm Texas.