I visited Mayo Clinic in Rochester a few weeks ago and I thought others here might like an update or might find my experience useful.
I consulted with Dr. Suresh Chari and Dr. Darell Pardi. Dr. Chari will be directing my care in collaboration with Dr. Pardi, who seems to now focus on research and not on clinical care.
I can see why others have praised Dr. Pardi. He is very talented at describing what we know and what we don’t know about mesenteritis, what the research is saying, and how they think about directing care for the condition. We discussed my expectations and I described the impact of the condition on my life and what I thought we might be able to accomplish at Mayo (to increase my ability to live fully by, for instance, being able to exercise a little bit, but NOT to be pain free, or to “go back” to how I used to be, or even to have anything like a normal diet again). He said that I had “reasonable expectations” and that improving my quality of life was almost certainly achievable, which was good to hear.
They want to focus on low-risk treatments first and only move to treatments with more side effects and risks if we don’t have early success, which makes sense to me even though the first steps will be less aggressive than the treatment from University of Chicago Medicine, which I didn’t respond well to. They placed me on a ramp of Nortriptyline (on the basis that chronic pain conditions habituate the nervous system and mind to the experience of pain so that, regardless of the presence of absence of physical conditions, the mind experiences pain – which isn’t to say that they are claiming there is no basis for the experience of pain – and nortriptyline has been found to help in this regard although it isn’t the primary use of the medication) and a short trial of meloxicam (since I responded very poorly to the course of Prednisone I got from University of Chicago Medical Center) to see if I respond well to it.
Dr. Pardi also walked me through the long list of things we can try, the level of risk which they believe is justified by the level of impact of my condition, and how they would order the treatment options based on trying the lowest risk treatments first.
I also meet with Dr. Jon Tilburt at Mayo to talk about developing “mental resilience” and managing stress. Mostly I’m past the stress of thinking that I may be unable to work, which was the largest source of stress I had. Because my symptoms have improved over the last year due to diet, rest, and medication (extended release hyoscyamine having provide the essential ability to sleep enough to recover over the last 1.5 years) and because I spent a year talking to a good therapist about accepting that my life is now different (not better or worse, just different) I am managing pretty well now. Nevertheless, Dr. Tilbert provided a number of suggestions on things I might add to my “toolbox” to help me manage better going forward.
So that is my Mayo Clinic adventure so far. Everyone there was amazing and the facility is incredible. They are so thoughtful and caring and everyone I met was patient and helpful. They even took care of my family as I went to appointments. Oh, and I passed on the gratitude to Dr. Pardi that so many have expressed here and in the Facebook group.
Good luck to everyone as you manage this thing. I just wake up every day grateful to live another day and to be able to share experiences with the group here. I hope you are able to do the same.