Dr Carter at the Mayo Clinic in Az

[flowerfloosey]

Has anyone had any experience with this neurologist? It seems I read something recently but can't find it.
Any help would be appreciated.
Thanks all,
Cynde/flower

[cuttersmom]

I'm glad to hear you say you lack motivation.  I thought it was just me!!  I can spend a whole day at home and maybe get a load of laundry done. It's been driving me nuts because I've always been one to go-go-go all day.  I thought maybe it was because I wasn't working full-time anymore, and am just thinking I have all the time in the world, but who knows!  It must be very frustrating for you to have all these issues but no answers.  I hope, for your sake, that you get the answers you are looking for at Mayo!
Hang in there -
Kristen

[flowerfloosey]

Thanks Kirsten. I have a problem with motivation so I have to push myself to do anything. This has come along with my other symptoms and has affected my life so muchy. I have also lost the ability to plan and carry  out things well. I have some friends that I have had for years and they know how I used to be. I have always been a "doer" so I hate this feeling. Everything feels overwhelming. I am hoping maybe some of this is depression (which I have been treated for) and when I finally get a dx..I will be able to move on. This has been going on for over 4 years. I have been to 5 neuros amongst lots of other specialists. My long term pcp moved and the doc that took her spot and I didn't get along. I have some work ahead of me! I did just purchase a notebook to start tho!

[cuttersmom]

I have my MRI's in hand, but I called the Diagnostic place and requested a CD, and they will have it for me this afternoon.  I would suggest doing the same.  In the end, if all you have is the films, then so be it.  

Luckily, I only have 1 Neuro, and 1 Uro, to get records from (and it's only been 5 months) so I don't have a lot to keep track of.  My mother is beating me over the head about making lists so I don't forget anything (I'm not a list kind of person), but I have started to jot things down as I think of them, questions mainly, cause lately I seem to have CRS disease (Can't remember s***!). Just take it slow and make a list as things come to you. Even if you are forgetting something, I'm sure Mayo will make sure they do a test to figure it out.

Hope all is well and thanks for the itinerary info.
Kristen

[flowerfloosey]

I have not received the welcome packet but I did get my itinerary.I got it in the mail.  I am going to call them tomorrow and ask a couple of questions about seeing a GI doc while I am there.

I have posession of all my exrays. I am wondering how I would go about having them put on CD's if I have them?? They told me to bring test results for two years.

I am feeling a bit overwhelmed by getting this all together. I feel like I don't want to forget anything and that I have to get the best possible results from this as I think it is my only chance to get a dx! I will be so happy to hear all about your visit. I would love to talk to each of you on the telephone after your visits if that would be possible. I am not sure how?

Hope you are both having a good day!
Cynde

[cuttersmom]

How did your itinerary come to you? Mail, email?  I got the welcome packet with the papers to fill out on Fri. via mail, but I haven't gotten an itinerary, and I am wondering about that.

Kristen

[goofysmom1]

Ask your doctor for your MRI's to be put on a CD - they should be able to do that without any trouble.  The Neuro referred me to the GI and they were able to get me in to see him before I was supposed to leave (before I had to extend the trip for the GI tests).  The doctors will take copies of the tests that you brought with you & give you your originals back.  

They do their best to fit everything in during your stay - I had a flexible ticket home & was able to extend my stay without much difficulty, so that gave them a bit more time for scheduling.  I am glad that I was seen by the GI department here.  I have a great GI doctor at home, but it is reassuring to hear that I am getting good care back home.  Plus, they are doing some more tests to confirm my GI issues.

The clinic is closed on the weekends - so if you are up to it there is time for sightseeing if you haven't ever been to Scottsdale.  The Phoenix Zoo is about 30 minutes away & it is pretty cool.  There is a botanical garden right next to the zoo that is supposed to be amazing (we didn't get there to see it unfortunately).

Chrisy

[Lulu54]

Cynde,
What format are you MRI's in right now?  Perhaps someone here can tell you how to convert them onto a CD  - or if you call the places where they were imaged at, please request they burn them to a CD and see what they say.

I am truly getting excited for you - this has to be the medical help you have been seeking for so long.  

- Laura

[flowerfloosey]

Thank you for all of you input. My husband is going with me and doesn't mind driving me to and from and waiting for me. We are going at this together..hoping above all hope to get answers to my failing health.
They didn't tell me to bring all my records with me...but I am going to. I have some of them and have to obtain the others. I will take your suggestions about organizing them. I found a good help at "howto.com". about medical records.
I got my itinerary yesterday and I have three appts with the neuro the first day and then nothing and then second day with three other docs. Did you have to wait to see the GI doc? Was he hard to get in to see? I have GI issues too and since I will only be there a week, I am kinda nervous about getting it all done.
Also, they request that your mris etc are on cd. Most of mine aren't. I wonder what to do about that??
Does anything happen at the clinic on the weekends? Hope you are getting some answers! Thank you again for the time you are taking to write! It helps soooo much!
Hugs,Cynde

[goofysmom1]

The Courtyard Marriott is an okay hotel.  It isn't fancy, but it isn't run down either.  The rooms are comfortable - again, it isn't a high end hotel.  If you haven't ever been to Scottsdale, AZ - it is fairly close to most things.  I have liked being close to the clinic just so that I could come back between appointments.  My appointments the first few days were either grouped together, so I stayed at the clinic, or they were far enough apart that I could come back to the hotel & have lunch or take a nap or whatever before going back to the clinic.  

If you have someone who can drive you - and doesn't mind waiting around for you, or coming back to get you - then stay where you are comfortable.

How your appointments will be scheduled will be dependent on what tests they have prescheduled, what they cancel after you have seen the Neuro, and what additional tests they decide to do once you have seen the Neuro.  My itinerary changed 4 times while I was here.  So how it is when you get here will (probably) change once you have seen the Neuro.  They have a scheduling department that even puts an appointment on your itinerary when you have to go to the scheduling department because of a change in schedule, or if they don't have everything scheduled yet. (an example is that they needed confirmation from my insurance company about a test being covered, so they couldn't schedule it until they had heard from the insurance company - so I had to go back to get my new itinerary once the test was approved & scheduled) It is quite amazing really - how they run the clinic.

If you don't have someone to drive you, then I would suggest staying as close to the clinic as you can.  If you do, then stay where you are comfortable.

As for your medical records - bring all that you can.  Just in case.  I brought my GI stuff & ended up getting a referral to the GI department, so I was glad to have brought those records as well.  I bought a notebook and put dividers with pockets in it & seperated the records by department.  (I tend to be overly organized...)    :)

I saw all sorts of folders/record keeper type things that people were carrying around - so again whatever is easiest for you to keep things organized, so that when you have to pull a specific record/test result out - it is easy for you to find.

I know that I was unsure of how things would work when I got here, but you figure out how things work pretty quickly - plus everyone who works at the clinic is very helpful if you get confused or overwhelmed.

Hope this helps!

Chrisy

[flowerfloosey]

Can anyone give any advice on how to organize your medical records to go to Mayo or another large medical clinic? They asked me to bring some of the test results with me but I am not sure if I should get my records from all the doctors I have seen for various things that may be related to MS? Since I have no diagoses, I am just wondering. What about order of them so the doctor can easily read them? Any help you can give in this area would be most helpful!

[flowerfloosey]

Hi Kristen and Chrisy, How did your appt with the neuro go yesterday? Thank you both for all of your info. It is most helpful.
I read all the reviews on the courtyard at Mayo and people said it was older and needed redoing.How is it?  Can you give me your opinion on what your day looks like schedule wise while you are there? I am trying to figure out how I am going to feel about staying 9-10 miles away from the clinic?? I can easily cancel my reservations. Since I don't know the layout of the area..it is just a guess. We have reservations at the Gainey suites. I am having second thoughts about staying so far away. I asked a friend that just came back from there what they would do and they said they would stay someplace away from there. I am just thinking that I might be really tired and want to lay down between appts. Did you feel that way?? Thanks for all you are doing to help those of us who are on our way there!
Hope you are feeling ok!
Hugs,Cynde

[Lulu54]

You are a great example of what this community does best - sharing!  I am not going to Mayo, but if I were I know I could count on you to guide me.  good luck, Lulu

[goofysmom1]

I chose to stay at the Courtyard Marriott here on the Mayo campus just because it is so convenient.  The hotel has a free shuttle that literally only takes about 2 minutes to get to the clinic.  I have walked also, which only takes about 5 minutes.  The Courtyard staff are very friendly, helpful and they understand when you tell them that you may need to shorten or extend your stay.  They also have a "mayo clinic rate" for those who are being seen at the Mayo Clinic.  Make sure you ask about that.  They told us that only about 15% of their occupancy is NOT mayo clinic related!

As for a rental car - I found one of the least expensive was Advantage.

Cynde - I don't know what airline you are flying - we are from Seattle, so I chose Alaska.  Our flex ticket for our return flight was $370 per person plus taxes.  Considering the fees that the airlines can charge you for changing a non-refundable ticket - it was the better price for us.  

The Courtyard Marriott has a cafe that serves a buffet or menu ordered breakfast & then a regular menu for dinner.  They also have a limited bar.  You do have to pay for these - they are not included in your room.

Chrisy

[cuttersmom]

Unfortunately this is high time in Phoenix!!  All "tourist" stuff is expensive. Try Fox rent-a-car. I checked approximate dates for you, and they seemed to be about $200.00 for the week, depending upon the size care you wanted.  What hotel will you be staying at?  I have friends that work at the Fairmont Princess, and I'm going to try them to see if they can give me a good rate.  The Residence Inn is $30.00 more per night but it includes the breakfast buffet and evening cocktails (I have a feeling I might need the cocktails!!).  I'm just glad that you and Chrisy directed me towards staying in a hotel and planning on being there longer than just the one day! (what a dummy I am!)

[flowerfloosey]

Thank you guys for commenting on this thread. I made reservations yesterday for round trip with a 150$ each change fee. Yikes. I didn't know you could buy a ticket without it! I wonder if I should call and see if they will change that for me?
I am working on getting all my medical records in order and get them from all the docs I have seen.
This trip is costing us so much money as he likes to stay in a nice hotel. I kind of wanted to stay in the courtyard too but talked to a friend that just returned from the mayo and he said that he liked staying away from there, so I followed his choice. We will see how it goes. We are staying 15 minutes from there. My problem in now that I can't find a inexpensive car rental. Any ideas?

[cuttersmom]

Thanks for the info.  I called this am, and they said to plan for at least 3 days.  Rather than bunking in with friends & family (we're from there but now live in Vegas), I guess we'll get a hotel room there at the Courtyard.  I'm guessing it would be a lot of back and forth.  My mom is flying out to go with me (hubby just took his vacation 2 weeks ago) so she is changing her return flight just in case it does go longer.  And now rather than leaving my 8 year old at home with hubby, I will take him out of school and take him with me.

Again, thanks for the info, and please let us know how it all turns out!

Kristen

[goofysmom1]

I should also point out that when you schedule your appointment, they automatically preschedule certain tests.  Once you have seen the doctor, they will cancel any that they don't need - it is easier to cancel tests than to try to find available appointments in your short stay here, especially in my case where I needed so many different tests.

Chrisy

[goofysmom1]

I am not dx'd and when I scheduled my appointment, I had only had an MRI of the brain so I have had to have all of the rest of the "typical" tests.  Blood, MRI of C  & T Spine, EMG, Opthomologist etc.  If I was not seeing the GI docs here, I would be going home today. (a total of 7 working days for the neuro stuff) The literature that they send you tells you to plan for 3 to 5 days.  They do their best to schedule everything as quickly as possible.   When I booked our flights, I made sure that the return ticket was flexible (no fees to change it) just in case we were here longer.  I have had to change our flight home twice now, so although the ticket home was more expensive, it has saved us in the long run.

They also don't repeat tests unless they feel it is necessary.  The neuro saw no reason to repeat my brain MRI at this time, but I would imagine that is a decision that is very individual to each patient and what tests have been done & how old the tests are.  Just my thoughts - not completely sure about that.

The neuro I am seeing is Dr. Brent Goodman, he seems very nice & very thorough.  I have only seen him once, (my first appointment) and then he ordered all the tests - other than my neuro exam and the brain MRI that I brought with me, so he didn't have much to work with until he sees the rest of my tests.

It will be very interesting to see how today's appointment goes.  

If you have any questions - regarding your stay here in AZ or how the system works, call the Mayo.  They are very helpful and as I said earlier, their system is very well run.

Thank you for the kind thoughts & I will let you know how it goes.  Since I am here until Tuesday (for the GI stuff) I won't post my whole experience until I get home, but feel free to ask me questions anyway!  :)

Chrisy

[doni54]

Wow, good luck to all of you at Mayo.  Hope things go well.

doni

[flowerfloosey]

I hope your appt goes well. I plan on being there all week but my hubby won't be able to stay for over a week. We will see how it goes. Which neuro are you seeing? Just curious. Are you happy with him?
Take care and thanks for posting!
Cynde

[flowerfloosey]

They told me to plan on at least 3 days. I have all my tests too but am due for a brain scan. My neuro here wanted to do another lp but since I have had three and they say once they are positive..they don't go back to being normal, I am not too up for it unless they really think I need it.  I am just making myself available for whatever they might want to do. Since you already have a dx maybe that won't be necessary. We are going to stay a week in az. We had to make plane reservations etc so didn't want to cut it short just in case. Guess we will have a warm vacation if it is not needed! There is much to do there. I live in N Calif so it is a ways there.

[cuttersmom]

I'm going to Mayo in 2 weeks to see Dr. Carter.  I already have an MS dx, but want a second opinion and if confirmed, treatment in the best place possible.

Can you tell me..Did you have your initial appt. and then go back for further tests?  I probably should have asked that when they called for the appt. but I am just planning to go to AZ the night before and home the next day (not planning on a whole week but should I be?).  I have all my MRI's, EEG's, Nerve tests, and reports from Neuro here, so I can't imagine what else they might do, except for the LP.

I will certainly post my experience with Dr. Carter upon my return.  Hoping for the best.

[goofysmom1]

sorry was supposed to be signed "chrisy"...stupid fingers...

[goofysmom1]

I am at the Mayo clinic in AZ right now.  I will be seeing my neurologist tomorrow for my test results.  I have been here for a week for the neuro stuff and because the neuro referred me to a GI doc, I am now here until next Tuesday.  

Everyone here is extremely kind, empathetic, helpful and the whole system is run very well.
As for the doctor that Cynde is scheduled to see, her best bet is to look them up on the mayo website, unless someone here has specific knowledge about him.

I will post up my opinion on the whole experience when I am done here.

Christ