At the new Mayo Vaculitis Center

**drz** · 01-14-2011, 09:00 AM

Originally Posted by Minneapolismark

Here is the link regarding the Mayo Medicare and Medicaid. It also mentions charity and financial assistance options. Billing and Insurance Information for Mayo Clinic in Rochester, Minn.

Thanks for posting this. It makes an interesting read. It says they will take Medicaid for patients from Minnesota and bordering states but no other states. It will only accept Medicare assignment from Minnesota residents so others will be responsible for the roughly 86% that Medicare does not cover. This may be their official position but yet I know of a case last year where a Minnesota resident with Wegener's disease was in a small hospital in North Dakota and the Mayo refused to accept the patient on a transfer. The family believe it was because the patient was on Medicare, but Mayo official response was the patient could get all the care needed at the hospital in ND. No one else believed this and the doctors finally aranged to transfer the patient to a large hospital in Minneaplis where they had experience treating Wegener's. Mayo (Dr Specks) did then consult with treating doctors on patients care but probably more so because of personal relationship between the two physicians.

**Minneapolismark** · 01-14-2011, 09:05 AM

OK, the first flaw in the Mayo machine... My neurologist is their Wegener's guy in the neurology department. Great guy but he seemed to be unimpressed with the whole Wegener's motif. I have no permanent nerve damage, which us great, but he actually said he had no idea why I was seeing him! Not a big deal, but I am trying to give you an accurate picture of the experience. I had the impression that, if there was no permanent damage then the underlying cause is not neurological, and the treatment will focus on Wegener's mitigation and control, and not on neurology.

Still, after the appointment I frankly felt kinda stupid for wasting his time. But, as my loving wife points out, the leading expert in the world made the appointment, I did not.

**Minneapolismark** · 01-14-2011, 09:13 AM

Yep, the Mayo has a reputation for only accepting convenient patients. Don't know if it is true, but that is what they say. It started in the 1800's in response to a category 5 tornado here in Rochester MN. There were no medical facilities or trained personnel, so the Mayo brothers started a hospital (St. Mary's) and started training medical personnel to staff it. So, they definitely take care of Minnesotans first. You see a lot of elderly Scandahoovian farmer-types and quite a few Mennonites and Amish in the mix along with oil sheiks and celebrities.

Still, I would give it a shot. I would go so far as to come here for something routine to get a patient ID as that is the magic key to the kingdom. That would make it way easier to get in later.

Originally Posted by drz

Thanks for posting this. It makes an interesting read. It says this will take Medicaid for patients from Minnesota and bordering states but no other states. It will only accept Medicare assignment from Minnesota residents so others will be responsible for the roughly 86% that Medicare does not cover. This may be their official position but yet I know of a case last year where a Minnesota resident with Wegener's disease was in a small hospital in North Dakota and the Mayo refused to accept the patient on a transfer. The family believe it was because the patient was on Medicare, but Mayo official response was the patient could get all the care needed at the hospital in ND. No one else believed this and the doctors finally aranged to transfer the patient to a large hospital in Minneaplis where they had experience treating Wegener's. Mayo (Dr Specks) did then consult with treating doctors on patients care but probably more so because of personal relationship between the two physicians.

**drz** · 01-14-2011, 09:14 AM

Originally Posted by Minneapolismark

OK, the first flaw in the Mayo machine... My neurologist is their Wegener's guy in the neurology department. Great guy but he seemed to be unimpressed with the whole Wegener's motif. I have no permanent nerve damage, which us great, but he actually said he had no idea why I was seeing him! Not a big deal, but I am trying to give you an accurate picture of the experience. I had the impression that, if there was no permanent damage then the underlying cause is not neurological, and the treatment will focus on Wegener's mitigation and control, and not on neurology.

Still, after the appointment I frankly felt kinda stupid for wasting his time. But, as my loving wife points out, the leading expert in the world made the appointment, I did not.

Be thankful your wife is so wise! Look for the over all rating and if 98% of the interactions are positive and pleasant that is very high index for customer satisfaction. Apparently the neurologist didn't understand the concept and value of ruling something out. Strange?

Keep reporting.

**Jack** · 01-14-2011, 09:22 AM

I think I must have been to nearly every department in my hospital to have things checked out, often with no very useful result except to add to the list of I Don't Know.

Few of them have made me feel that I was wasting their time, but you meet all sorts, from the friendly and helpful to the downright rude.

**Sangye** · 01-14-2011, 09:46 AM

A couple years ago Dr Seo sent me to a neurologist at JHU. After the history and exam she said she was fairly certain everything was okay, but she ordered 3 MRIs to make sure. She said to come back for a follow-up in a couple weeks when the MRIs were completed. At the second visit, she walked in the room and asked "What are you doing here?" I was like "Um, I have an appointment." She said "Frankly I'm surprised to see you. I told you everything was fine." I reminded her that she asked me to come back but she acted like that wasn't true. It was so bizarre! If everything was fine, why did she order 3 MRIs???

**Minneapolismark** · 01-14-2011, 10:06 AM

Yep, it is all good. Just had a pred mood swing.

**Minneapolismark** · 01-16-2011, 06:17 AM

OK, so here is the summary from my visit to the Mayo clinic. The bottom line is that I am responding well to the meds and my disease is under control.
* I need to keep on with the Mtx, pred etc.
* Dr. Specks is going to continue to see me on an ongoing basis.
* I have some scarring in my lungs but it isn't getting any worse and is nothing to worry about
* I have a couple of other health issues that are completely unrelated to Wegener's, so don't worry about your colons etc just because I had some things going on during my tests.

The bottom line for me is that I had another health issue that was getting lumped in with Wegener's and needs to be dealt with separately. Without seeing a Wegener's expert there was no way for my rheumy to know what was, and was not, Wegener's.

So you may find out that things are not as bad as you feared them to be!