I am considering going to either John Hopkins University Hospital in Baltimore or Mayo Clinic in Minnesota. I have MG, Hashimotos Hypothyroidism, RSD and possible dysautonomia. I wanted your feedback of your experiences at both of these medical centers so I can make a decision on which one to pursue.

Thanks,
kathie

I went to Mayo for treatment and found it suited what I was looking for. I was originally diagnosed locally on August 29 last year and had a CT scan that indicated an enlarged thymus. I refused to have surgery locally and opted to head to Mayo for a consult since my insurance covered me there.

I found their approach to be unique, but appreciated. I scheduled my initial appointment with a neurologist that specialized in MG and was told to plan on staying a week or so in order to accommodate any testing they wanted to have done. When I saw the doctor, the appointment lasted close to two hours where we discussed my history, symptoms, severity, etc. Then she did a workup of various strength tests.

I was then immediately scheduled for bloodwork after the appointment, an overnight oximetry for the following night and an EMG two days later. I also had a referral to a cardiothoracic surgeon and a follow-up with the neurologist immediately after the surgical consult on the second day. And then before I'd even left, I had surgery tentatively scheduled.

I will say it can be a bit overwhelming and tiring, depending on exactly how you're doing, but for where I'm at and what I want, it was definitely what I was looking for.

If you have any specific questions, I'd be happy to answer them.

Good luck in your search!

Adam

Thanks, what kind of testing did they do and how did your thymectomy go? Do you mind sharing your doctors name? And were any other specialists called in too?

thanks
kathie

I had the routine bloodwork and an EMG, both of which confirmed the MG diagnosis for me, so the neurologist (Dr. McEvoy) didn't feel the need to do any more testing on me. She did want me to see a neuro-ophthalmologist while I was there, but I couldn't get that to fit into the week (the closest appointment available was 2 weeks later). And the day before surgery, I had to do a pulmonary function test to ensure I could maintain breathing functions through surgery.

The thymectomy was very quick and easy. I had a VATS done by Dr. Cassivi. I was in on Wednesday morning and out of the hospital by Thursday afternoon. I did end up in the ER Thursday evening because of severe chest pain, ultimately determined to be inflammation of the pericardium. I was told ibuprofen would reduce the inflammation and was sent on my way and didn't have any other similar issues after that.

No other specialists beyond the surgeon and the referral to the neuro-ophthalmologist.

I really liked Mayo Clinic. They got to the bottom of my problem. I have faith in that facility. ginnie

Is VATS the same as Davinci Robot? Did they discuss at all doing it the "old fashioned" way...(cut you open)? I have one dr. that wants me cut open and one that thinks the Davinci robot is okay....so confused!

I don't believe they're the same, but I couldn't say with 100% certainty. I believe DaVinci is robotic, whereas VATS is video-assisted, but again, not sure if they're just different terms for the same thing.

They did not discuss the sternal approach with me at all. The surgeon said immediately that i would be a good candidate for the VATS. Not sure what the contributing factors may have been (age, weight, etc.), but I was certainly thankful that this approach was taken.