I’m so sorry to hear of your husband’s battle with Chronic GVHD. Yes, please, seek a second opinion for his situation at a Mayo Clinic. My husband and I cannot say enough about the amazing treatment, the quality of care and the incredible brain-trust of the entire staff we encountered at Mayo-Rochester. I was there for treatment and follow up for 4 months last year with my SCT.
My transplant was one year ago, June 2019 following a 4 month chemo regimen for AML, diagnosed in February 2019. While I’ve not had any long term issues to date, over the course of this past year I have had 2 situations which required a quick response and aggressive treatment which brought them under control.

The advantage of the Mayo Clinic is that all of the top specialists in their field are in one place. The cross-departmental relationships are seamless...they all work together relentlessly to find a solution. As my SCT doctor said, “I have a thousand “phone-a-friends’”. He is a brilliant hematologist/oncologist- BMT/SCT being his area of expertise, but is the first to admit he is not a specialist in rheumatology or neurology. So when I had 2 severe and unusual issues pop up requiring those specialists, he did not hesitate to bring in other doctors in the correlating field.
To give you an example, both of my GVHD episodes were unusual as they did not fit into the ‘normal’ graft vs host complaints. The first was a debilitating tenosynovitis in both wrists and hands. My SCT-team/doctor immediately conferred with a rheumatologist who quickly brought it under control through medication.

In the second episode, for some unknown reason the new cells crossed the blood/brain barrier and decided to attack my spinal cord. The inflammation caused me to lose feeling from my waist to my toes. After an MRI at my local hospital showed inflammation on my spinal cord, I was rushed back to Mayo and in their hospital for 1 week. Upon my arrival my SCT doctor was there as well as one of the top neurologist in the country. Within 2 days I was up and walking again. After an aggressive treatment of meds, 6 months later I am back to normal with no lingering damage to my spinal cord.
Early in my recovery I also had a minor anomaly with my eyes which prompted a visit to an ophthalmologist at the clinic as well.

The clinic is so large with doctors and researchers in every imaginable department experienced in treating GVHD. I wouldn’t hesitate to set up an appointment with the BMT center.
I hope my experience is helpful to you and should you choose Mayo-Rochester I’d be happy to relate to you any additional information regarding the clinic, where to stay, eat...etc.
Best wishes to you and your husband, Lori.