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  • Evaluation at Mayo Clinic

    [Evaluation at Mayo Clinic]

    Author: christine (---.proxy.aol.com)

    Date: 11-14-02 13:47

    Hi! I was diagnosed with IHSS (that's what my Dr. called it) in 1997 at the age of 46...I have been on medication for my symptoms and I thought I was doing better...I also listened to what my doctor told me to do....I even lost weight and walk a couple days a week...But my last visit in Sept., he told me I needed to get an evaluation from a specialist at the Mayo Clinic...In March, my septum was 4.0 and then in Sept. it was 4.5-5.0 cm....So he made the appointment for me with Dr. Tajik....I know that I'll have tests on the first day and the next day see the Dr. I live in PA and I am concerned about travel plans home....I don't know what to expect or how long I'll be there...When I called the clinic, they said it takes anywhere from 3 to 6 days...Can anyone help me with this???? My appointment is the first week in Dec.

    I've been reading this message board every day and it's helped me learn alot about my condition...I was hoping to find more information on 1st evaluations.....Thank you....

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    [Re: Evaluation at Mayo Clinic]

    Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

    Date: 11-14-02 15:19

    Christine, We live in Maryland and flew to Mayo. We had to fly Northwest. They have a medical travel program, it allowed us to change return dates as needed and also gave a discount fare. Call the main # and ask about programs and options. They are very helpful at Mayo and try to arrange things with travel in mind for their patients. They are used to a large percentage of their patients coming long distances. It also helps if they have records ahead of time, esp an echo tape, not just the written report. That lets them arrange the appropriate tests for you. Just a few suggestions - hope it helps. Most important, take a good book.............. Best wishes, Linda

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    [Re: Evaluation at Mayo Clinic]

    Author: Sarah B. -Board Moderator (---.client.attbi.com)

    Date: 11-14-02 19:11

    HI,

    When I went to the Mayo, I booked a hotel and flight for a 3 day stay and everyone assured me that I could extend my stay at any time. You must make sure that this is true for your ticket, however, as the rules are much tighter post 9/11. Northwest is the only airline for you into Rochester and probably to Minneapolis, too.

    You will get a battery of tests like you are on a conveyer belt the first day---however they are the nicest, easiest, least waiting time, most advanced test you are going to get. They develop the xray while you are there (takes 2 minutes) in case they need more. They do a 16 lead ECG and then you get an echo. Then the doctors read all the stuff and see you the next day and talk about options. If they want to do more fun stuff, they'll do it the next day (like a TEE or an EPS or other fancy stuff). If you need surgery, they'll probably book it for a convenient time for you, unless they think you need it asap.

    Try to have as many of your records sent ahead or bring them with you and give them to the staff at your first appointment so they get into your file with the test results.

    Eat at Daub's Bakery and Restaurant.

    take care,

    S

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    [Re: Evaluation at Mayo Clinic]

    Author: Dolly W (---.proxy.aol.com)

    Date: 11-14-02 19:46

    Christine,

    I was at Mayo last month. I had tests on day one, Dr. visit day two, and surgery scheduled for day three. Unforunately, surgery was rescheduled and I had an angiogram on day three. I was there a total of thirteen days (which included five days in hospital and two weekends).

    Sarah is right about the tests and how fast you are seen. The wait time is minimal, if at all. They were acomodating when it came to scheduling everything in one trip (I live in Louisiana). As far as travel goes, I flew home two days after my release from the hospital.

    Hope this helps.

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    [Re: Evaluation at Mayo Clinic]

    Author: christine (---.wpsr.com)

    Date: 11-15-02 04:24

    Hi Dolly!!!! Thank you so much for this information...That was really fast for you to make a decision on surgery....I do understand that the doctors there will give the best advice on my condition...and it is really far to travel there....I guess I'm trying to prepare myself and mostly (my husband & kids) for all of this..Can you tell me more about your condition???? Thank you....

    Also, Sarah B. and Linda.....Thank you...I am so grateful to hear from you...I'll keep everyone posted on my experience....

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Evaluation at Mayo Clinic]

    Author: Dolly W (---.proxy.aol.com)

    Date: 11-15-02 05:31

    Hi Christine,

    Send me your email address, I'll be glad to talk with you! If you don't want to post it here, just click on my name in blue (above) and you can send me an email privately.

    Looking forward to hearing from you!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Evaluation at Mayo Clinic]

    Author: Midge Rollins (67.1.110.---)

    Date: 11-16-02 11:32

    Christine, everyone is right. Mayo will work with you. You will be treated as a person not a number. Most all of the motels run a shuttle service back and forth from motel to clinic/hospital. I am leaving Nov. 17. for a week of testing. I have been going there for 25 years with my HCM and am real pleased. We usually stay out a ways on Hwy 63 and shuttle in every morning then you do not have to worry about trafffic and parking. Hope this helps. Midge.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Evaluation at Mayo Clinic]

    Author: Midge Rollins (67.1.110.---)

    Date: 11-16-02 11:34

    I forgot to tell you. I saw Dr. Tajik for years. He was the head of the Cardiology Dept. at mayo for a long time. Very good. Make him explain everything to you.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Evaluation at Mayo Clinic]

    Author: christine (---.proxy.aol.com)

    Date: 11-16-02 19:09

    Hi Midge,

    Do you still see Dr. Tajik? Is he still the Head of Cardiology at Mayo???? What do you mean----have him explain everything???? Does he try to talk on our level of understanding???? The reason I'm asking is....sometimes I have trouble uderstanding my cardiologist at times...Was he the doctor that did your 1st evaluation???? Did he give you options right away???? Can you tell me more about him and your situation....I do know that he lectures all over the world...and that he isn't always available at the clinic...Sorry about so many questions....My mind is working overtime right now with worry.....

    I want to go there prepared...since it's so far to travel....I want to be sure I don't go home confused.....Did you make a list of questions that you wanted answered, etc....

    Please let me know more about your experience....Thank you....

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Evaluation at Mayo Clinic]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 11-16-02 19:53

    Dear Christine,

    I always write down all my questions or my beta-blocked mind will forget everything the second the doctor walks in the door. That being said, the Mayo goes way, way, way out of their way to make sure you understand EVERYTHING. they won't leave the room till they know you "get it" and agree with the course of action that they recommend ---yes, recommend. No strong arm tactics, just solid, experienced, expert medical advice. They gave me a whole book on cardiac care that was written in very easy to understand language. A lot of it applies more to heart attack patients, but maybe they'll write one about HCM someday.

    Don't worry, the Mayo knows what it is doing and will take good care of you.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Evaluation at Mayo Clinic]

    Author: Midge Rollins (---.nas6.cedar-rapids1.ia.us.da.qwest.ne)

    Date: 11-17-02 06:15

    He is a brilliant man and his term as chief just ended. I do not see him like I used to due to the fact he is so busy. Any of the Drs in the cardiomyopathy clinic are great. I usually see Dr. Klarich. I have been going there for 25 years. I am now 56. Have had IHSS forever. I had a myectomy when I was 35. They follow me still and are great. Yes, take a list of questions as we always forget something. You will probably meet with Doug Kacere also who is a nurse that helps with the cardiomyopathy and he answers questions and is very knowledgeable. I am off for there today. Good luck.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Evaluation at Mayo Clinic]

    Author: Heather (65.247.157.---)

    Date: 11-17-02 06:18

    Hi Christine. I just got back from the Mayo!! It is so wonderful there. I scheduled myself 5 days there and it wasn't enough. Ended up having to have surgery done the next week. I flew Continental and they charged us $100 per person to change flight plans. The tickets were cheap, which is why I went with them, but I wasn't happy with the fee. So, check with Northwest on the medical plans/rates. Rochester is a nice town. Let me know if you have anymore specific questions..

    Heather

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Evaluation at Mayo Clinic]

    Author: Ada (---.netcarrier.net)

    Date: 11-18-02 07:08

    Hi, Christine,

    I also live in PA. I visited the Mayo Clinic at the end of April. I visited with the doctor on the 29th and had surgery on the 30th. I did not know whether I would need surgery when I went out so I was not sure when to schedule my flight home. I traveled on Northwest airlines and, as Linda mentioned, they allow you to change your return date if necessary. If you do need surgery, you will not be able to travel home without some help. If you have someone traveling with you, than that's not problem. If not, be sure to make arrangements ahead of time with the airline.

    I'd be happy to talk to you more about Mayo and about the travel to and from. Please e-mail me if you have any questions.

    Good luck!

    Ada

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Evaluation at Mayo Clinic]

    Author: mary (---.wi.tds.net)

    Date: 11-19-02 16:35

    My son is fifteen and was diagnosed one year ago. We saw Dr. Tajik. He is very nice and explains everything on a level that you can understand. He was very thoughtful to our teenager. My son thinks he is great. He has a great sense of humor. He is foreign but speaks english very well and easy to understand. (I was concerned that I would not be able to understand him)

    We were scheduled for 2 days and stayed for 5 days. the hotels are very accomodating. we like to stay at best western, soldiers field. they have fridges in the room, continental breakfast, it has been recently updated. very clean. the shuttle service is great and accomodating.

    bring a book with you. you occasionally have to wait between appointments and there is not much to do in rochester. Try to eat at Victorias...excellent italian food.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Evaluation at Mayo Clinic]

    Author: Lisa Salberg (167.165.39.---)

    Date: 11-19-02 17:52

    Dr. Tajik and Dr. Nishimura are great and they have a great team at the Mayo... I am happy to see you are all in such good hands.

    I think we need to arrange a MMC - Mayo Myectomy Crew...we have already had CMC parts 1 and 2!

    Maybe it will workout for some of you to meet up out there!

    best to all!

    Lisa
    NOTE: This is a post from the previous forum message board.

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