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Two Days Until My Next Mayo Visit

Monday, March 21, 2011

Only two more days until my next Mayo Clinic visit. This time we will get up at 3a.m. and be out the door by 4a.m. to make it there before 7:45a.m. My first appointment is at 8:15a.m. for a thoracic MRI and I have to arrive at 8:00a.m. at the office which means I need to check in downstairs at 7:45a.m. My second appointment is at 10:15a.m. with a cardiac doctor for an intake appointment. Then we break for lunch unless that doctor wants any other quick tests. My last appointment of the day is with my Mayo Clinic primary care doctor at 2:30p.m. Hopefully, he will review the results of all of the previous tests and give us some feedback. That particular appointment my hubby is allowed to attend. He will be allowed to ask questions about the findings and recommendations for treatment. Together we will decide on a treatment for me after weighing the alternatives carefully.
I am both excited as well as apprehensive about the trip. My emotions vacillate between fear and possible relief. I think I just want it to be over and just want to already be fixed. This is only the second step in the process. On May 9, I have an appointment with a neurologist who specializes in migraines. Hopefully he can help me deal with my crippling headaches - especially if they don't recommend surgery to fix my neck. If they do decide to do surgery, there will be many more steps in the process.

  Member Comments About This Blog Post:

SLENDERELLA61 3/24/2011 7:01AM

    Oh, Cyndi! Hope it went well. Wishing you all health and comfort! Regards, Marsha

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PEGGYANNSCH 3/22/2011 11:19AM

    Have safe trip

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AMANDAJCD 3/22/2011 10:56AM

    Will be praying for you! I hope they find something definitive that there's a simple, straightforward fix for.

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AQUAGIRL08 3/22/2011 10:24AM

    My heartfelt thanks to all of you. I appreciate all of your prayers too.

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DONNABRIGHT 3/22/2011 7:10AM

    Have a safe trip and will pray for good news.

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FITCOFFEEMOM357 3/21/2011 8:05PM

    God bless you Cyndi and your dh. I have watched my mom with her migraines all my life. They get worse every year. I pray they find some relief for you.

I will be praying for you.

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L*I*T*A* 3/21/2011 7:06PM

    hang in there...we are here for you.......
sending positive thoughts and prayers your way..........
blessings and hugs...............lita

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WILD4STARS 3/21/2011 5:50PM

    All fingers are crossed and prayers are heaven bound!

You are so BRAVE! All you have gone through and you still keep seeking the answers. Many would cower in the corner and just hope for the best. You've gone out and made it your mission to get answers! What an inspiration.

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HEALTHY4ME 3/21/2011 5:06PM

    I will be thinking of you and praying for you. I totally understand the wanting it to be over, I am waiting for the apt for a 2nd mamogram as they saw "soemthing" of small consequence " but still even telling me that has me scared.
So hang in and so glad you are getting help!

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My First Visit To The Mayo Clinic

Tuesday, March 15, 2011

Many of you may know that last week I had my first visit to the Mayo Clinic in Jacksonville, Florida. It is an amazing facility. The staff there is very different from any medical facility I've ever visited before. If they are going to make you wait, they tell you that you are going to have to wait and approximately how long you will have to wait and why. They are polite and professional and call you by name. The staff also knows that if a patient is coming to the Mayo Clinic, it is usually because they have an issue that couldn't be solved somewhere else and they understand that the patient is frustrated, scared and often in pain. Every staff member that I came in contact with, even if they were frustrated when their computers went down or if it was late in the day and they were tired, was kind and gentle to me.

One day I went to the wrong building to register for a test. I waited patiently in line for my turn and when I got up to the desk, instead of turning me away and telling me to go to another building, the receptionist told me to stay right there and not to worry - it happens all the time. Then she disappeared. I was watching the clock and mentally calculating the minutes until I could get to the other building. As the minutes ticked by, I was torn between staying like she told me to and dashing for the other building. When she appeared she apologised for taking so long. She had called over to the other building and told them that she was registering me at her building. She ran off all of my materials, had me sign all of the papers there, made up a pile of materials for me to carry up to the neurology department and gave me directions to my appointment. I was shocked and so grateful that I could have cried. All she could say was that it happens all the time and she wished me good luck with my tests. How great was that?

The doctors at the Mayo Clinic think outside the box and tend to treat the whole body like it is all connected and not just part by part. This is a new concept for me. They explained that many symptoms can be related to more than one thing so you can come in thinking that you have one thing but you may have a combination or you may have something entirely different. So although I present with cervical spine issues, I have symptoms that overlap with thoracic spine, cardiac/circulatory system, lungs, and thyroid. That's a pretty wide scope but I want them to find it all and treat me so it must be done.

The first thing I had done, after meeting with my Mayo primary care doctor, was a complete thyroid panel. That was easy. The second day I had a chest x-ray and an EKG. The third day I had nerve and muscle conduction tests and a consultation with a neurologist. These two tests were really ugly and very painful. I was glad that I hadn't eaten before the tests because during each of them there was one point when I almost got sick to my stomach. If I had eaten, I would have gotten sick! When I was finished, my hubby said I looked like walking death and I was in horrible pain. We had already checked out of the motel and decided to drive back home (a three and a half hour drive) and I was in agony. It was a good thing that I had brought pillows to put under my arms and medication for the pain.

We were told before we left that we need to come back on March 23. I will have an MRI of the thoracic spine, a cardiac consult and then a consult with my Mayo primary care doctor. I have no idea whether or not they will order more tests for the next day this time. I've already brought up the possibility of that happening, to hubby. I don't think he's too keen on the idea (I don't blame him) but it's a long distance and if we have to stay, we will stay. I also have an appointment on May 9 with a neurologist who specializes in migraines. I'm anxious to hear what he has to say. I know that there is a syndrome that I may have with the way my head and neck sit on my shoulders that is very rare that causes migraines. My Mayo primary doctor commented on it last week when he was examining me. It should be interesting!

  Member Comments About This Blog Post:

BOLAURAOK 3/22/2011 7:04PM

  I am glad you found Mayo. I have friends who have needed the one In Roecheter (sp?) Minnesota and have found it to be just as excellent. I have heard many of their GI's do seminars and think WOW how fortunate it is to know that if the day comes and we need more care it is there. ( a 6 to 7 hour drive but what is that for good health?)

I am so happy you had a good experience.

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DONNABRIGHT 3/17/2011 8:21AM

    It will be a busy Spring for you going back and forth but it sure sounds like answers will come and you will get the treatment you need and deserve.

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SLENDERELLA61 3/16/2011 7:41PM

    It sounds like you have found the right place to get care from caring, competent, and professional staff. So hoping you get all the answers and the treatment you need. Sure hope you don't have any more tests that cause pain; you have to deal with enough pain day in and day out.

Take care and March 23rd will be here before you know it!! Love, Marsha

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EILEENV3 3/16/2011 6:11AM

    I'm so glad you finally made it to the Mayo Clinic AND that you had a positive (even if painful) experience. emoticon

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TBRANCH2 3/15/2011 11:05PM

    I am so glad that you have finally found a place where they take care of YOU, all of YOU!! You deserve this and much more. I know that the waiting is almost as much stress as the pain but, in the long run, you will know that you and they have done all that can be done. There will be no "what ifs".... Meanwhile, I am here when/if you need me!
Good luck!!

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L*I*T*A* 3/15/2011 9:38PM

    good to know that you have a great experience..........
hoping all works out for you...
keeping you in my prayers...
blessings and hugs..........lita

emoticon emoticon emoticon

Comment edited on: 3/15/2011 9:38:38 PM

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HEALTHY4ME 3/15/2011 7:26PM

    Now that is how everyone should be treated by the regular GP. I am so impressed I live in Canada and have heard greaet things about the mayo clinics. AWESOME and maybe some answers.
HUGS and hope your pain didn't stay long after you got home

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MIAMILAW96 3/15/2011 3:56PM

    I have always heard good things about the Mayo Clinic. Thank you for sharing. I hope that you begin feeling better soon.

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Starting To Get Ready For Mayo Clinic

Sunday, March 06, 2011

All of my paper work is complete. In fact, the Mayo Clinic called and said that I can skip the first hour of "pre registration" because I went to so much trouble to get all of my records to them in advance and they've processed all of it already. I just hope that nothing goes wrong with it - I did it in advance to give myself the gift of reduced stress.

I've been having nightmares about what they may find once all of the tests are in and reviewed. I know that this is because I've had entirely too much time to think about it. Five weeks is a long time to worry about what they will find after you've already been examined by a string of other doctors. As far as I know, the Mayo Clinic will only give me a list of additional tests this time or possibly a list of treatment options. They won't actually do any actual treatment. However, they may be able to tell me when and how I can get treated and that gives me hope.

The forecast says that the weather will be 70-ish while I am there so I will need pants and some long sleeves. I'm glad that I took the time to look that up. Perhaps I'll also need a jacket/sweatshirt for the evenings.

I got hubby a book that he has been wanting to read for a surprise. Hopefully it will give him something to do while I'm being poked and prodded. He is a king among men to cart me around like this when he has a business to run. I know he is torn between wanting to run his business and wanting to be involved in my care. You can all see where I rank. At the top of his list baby! I am one lucky gal! We are both a bit on the scared side and are trying to look at this as another adventure that we are sharing together.

  Member Comments About This Blog Post:

FITCOFFEEMOM357 3/10/2011 9:51PM

    I will be thinking of you and yes, you are a very lucky girl to be on the top of dh lists.

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HEALTHYWAY101 3/8/2011 2:25PM

    Many blessings, and some answers. You are strong, and your hubby will be with you all the way. Stay positive.

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DONNABRIGHT 3/7/2011 1:05PM

    I am trusting that this will be successful for you - you deserve it!

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PEGGYANNSCH 3/7/2011 7:03AM

    Good luck and safe travel.

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L*I*T*A* 3/6/2011 11:25PM

    all the best with your trip..........
wishing you the best outcome possible....
praying and sending positive thoughts your way....
blessings and hugs.............lita

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SLENDERELLA61 3/6/2011 8:52PM

    I think it is absolutely beautiful that you appreciate your husband and recognize his dilemna, choices and priorities. You are a lucky woman, and wise to recognize it.

Best wishes for a wonderful healing trip to Mayo. Relax and sleep. (Easier said than done, perhaps.) I have a very good feeling about this trip for you.

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HEALTHY4ME 3/6/2011 5:02PM

    I will be thinking of you, and hoping for good results and a prognosis that they can help you with. HUGS and safe travels.

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A Different Kind Of Reward

Friday, February 25, 2011

I was early for a doctor's appointment the other day, so I decided to stop at a near by store, just to kill a little time. I had a gift card that I was given for Christmas and I decided to use it. So I walked around a little and tried on a couple of things. I ended up buying a pair of shoes and two tops. As many of you know, I've been fairly confined for the last three months with cervical spine issues and have trouble using my arms. So when I passed an isle that has this wonderful gadget for cleaning the inside of my windshield as well as the bathroom mirrors, I decided that I'd treat myself to something special and I bought that as well. I left the store thinking that I'd really made good use of my gift card and I had rewarded myself too. I headed to the doctor's office and didn't think about it again until I got home.

When I got home, I modelled my purchases for hubby. He was dually impressed with all of my bargains. Then he asked me what else was in the bag. I showed him what I had bought just for me. He was glad that I found a gadget to help me with the windshield so I wouldn't hurt myself. As I was putting it away, it hit me. I am starting to naturally reward myself with non food rewards. This is a big step for me! My mother always used food rewards and it has been really hard to break that habit. Maybe I'm making some progress!!!

  Member Comments About This Blog Post:

PEGGYANNSCH 2/28/2011 12:31PM


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SLENDERELLA61 2/27/2011 4:52AM

    You are definitely making progress! Non-food rewards can be so motivating. Go, Cyndi!!

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HEALTHY4ME 2/25/2011 5:48PM

    emoticon emoticon old habits are hard to break, sometimes we don't even know we are doing it. Good for you!!!!

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ELISADENK 2/25/2011 4:27PM


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DONNABRIGHT 2/25/2011 3:53PM

    You also rewarded yourself with the time to shop at your leisure - way to go, girl!

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LNSYLVSDOGS 2/25/2011 2:15PM

    Bargains are so much fun!! Looks like you did good!!

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L*I*T*A* 2/25/2011 1:59PM

    emoticon emoticon emoticon

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I Have A Date For A Mayo Clinic Appointment

Saturday, February 05, 2011

The Mayo Clinic called this week with a date for my first appointment. They are going to screen me first outside of the neurosurgery department to see if I need further tests first. The date is March 8 at 3p.m. They will mail me information including lodging accommodations. They seemed to think that I would need to do further testing and see other doctors in the days following my initial appointment. I can also get into the neurosurgery department faster this way when I'm ready for surgery.

My husband is not happy about the time commitment because he is self employed. Consequently, I'm looking into flights between my area and Jacksonville. Perhaps an alternative would be for me to fly up there and back so he won't have to miss any business opportunities at home. I'm sure that it will all work out just fine. This is all such great news and a big relief!

  Member Comments About This Blog Post:

AQUAGIRL08 2/6/2011 3:33PM

    I got my information packet already and have filled it out. I've made copies of what I filled in and am ready to mail it back to Mayo. They do have two medium level expensive motels on campus where we can stay. One has an office center and both have trams that go to the different buildings on campus. There are also economy motels within 10 miles that will give us special rates if we tell them we are at the Mayo. I still have to sit down with hubby and go over all of this information. It's a lot to absorb in one sitting!

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DMBEECHAM 2/5/2011 10:14PM

    This is emoticon news. I'm so happy you have an appointment. I'm sure you'll work out transportation arrangements.


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L*I*T*A* 2/5/2011 9:54PM

    sounds like things are falling into place.....
all the best....
blessings and hugs......lita

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HEALTHY4ME 2/5/2011 6:01PM

    So glad you have some news and they seem so ready to accomodate you. I hope you can get things organized so hubby can go with you or is there someone else that can go too. HUIGS and glad things are getting finalized a bit.

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RUTHIEBEAR 2/5/2011 3:35PM

    SO happy things are going well for you to schedule this needed surgery. Keep us posted. Love your positive attitude. emoticon

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SLENDERELLA61 2/5/2011 3:30PM

    Oh, I'm really glad you've got your appointment. Wish I could volunteer to go with you, but I don't have a day without either work or kids. I just made an appointment with Social Security for March 3rd. I'm going to apply for my SS check effective July, which I believe will come in April. So, I'll be retired, barring employment offer I can't refuse. I'll still have a lot of commitments keeping kids, but I will be less hectic for sure.

So hoping you get answers and results. You deserve an active, pain-free existence. We missed you at the walk this morning, but of course we understand. Just wish you could.

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DONNABRIGHT 2/5/2011 3:30PM

    Try Allegiant Air - they have some good rates but they do limited airports - you may have to land outside the city and then drive 30 minutes or so or maybe take a shuttle service.

I sure hope this works out for you.

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