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Decisions Made, A Productive Week Followed

Saturday, April 02, 2011

After much discussion about my visit to the Mayo Clinic last week, hubby and I have agreed to stay with the same Mayo primary doctor. We arrived at that decision because I have two appointments scheduled by his office in May 9, with two specialists. These are the two specialists I originally wanted to see right from the very beginning back in February. If I rock the boat at this point in the process, it might bring me temporary emotional satisfaction but it also might interfere with the appointments that are already set up. Since doctors are human and they talk to one another, I may be labelled as a whiner or trouble maker. I don't want anything to interfere with my treatment at this point.

Sunday night I almost ended up in the emergency room with a series of 5-6 electrical jolts going up the back of my head so severe that I sat and cried. I think hubby now understands the relationship between using my arms and the pain up my neck and into my head. He was so scared (as was I) and didn't know what to do. So, I staggered to the bed and rested. I had little baby shocks later that night in my arms and head and all the next day and that was it. I seemed to be functional and the pain subsided.

Once the decision was made after we had the discussion and I made the mental adjustment, I was able to think about creative ways for me to be more productive and active. This was an interesting undertaking since I have to be very careful about how I use both of my arms. I finally figured out that if I wear a floatation belt and hold my arms close to my chest, I can kick my legs in a variety of ways and work just my lower body in deep water. I do this during water aerobics class with the permission of the water aerobics instructor who is aware of my situation. On Friday morning, I was even able to do some interval training and got my heart rate up! I try to limit all workouts to 30-45 minutes in length. If I feel any pain at all, I get out of the water immediately. I also wear a medical ID bracelet with my name and conditions on it. After my workout, I shower, dress, call hubby and tell him I'm coming home, drive home and then lay on the bed and rest. I was able to do this three times this week!

Hubby and I have been walking around the neighborhood, about 25 minutes, on the days when I don't go to water exercise or we go to our local WalMart and walk around there. Today I finally felt well enough to go to Saturday mass. I did have a problem with constantly standing up and sitting down and my arms started to throb. We were wise enough to sit in the last row so that I didn't have to sit forward when people kneel behind us (I can't kneel due to two knee replacements). After a while, I just remained sitting and I felt much better. There is no support for my arms or upper back which is my problem area and when I push myself up to stand again and again, it's a real problem. Next time, I'll just sit for the whole service. I will say that it was wonderful to be back in church. I've missed it!

I will continue to try to come up with creative ways to allow myself to be as active as possible and hubby will watch over me until we can get to our May 9 appointment.

  Member Comments About This Blog Post:

FITCOFFEEMOM357 5/16/2011 10:35PM

    I love how your dh is taking an active role in your health.

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L*I*T*A* 4/3/2011 1:14PM

    what a fantastic inspiration you are to us all....
praying all goes well for your next appointment in May...
blessings and hugs..............lita

emoticon emoticon emoticon

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HEALTHY4ME 4/3/2011 7:05AM

    I am so glad that you have been able to find some fixes, Boy that had to be scary, I haven't heard of that before and sure would knock me for a loop. Take care and so glad you have more upcoming apts and someone has to believe and understand this. Hubby will be able to say I Saw this and know what she looked like ect.
HUGS and good luck with these 2 drs.

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TBRANCH2 4/2/2011 11:02PM

    We are all so very proud of you and your progress especially in this time of pain and unsettling. It is always difficult to deal with physical limitations but, when the doctors don't understand, it makes things all that much worse!!!

It was nice to see you at the team walk and you are looking very well! The weight that you have lost is really, really showing!! Looking Good!! Keep up the great job and the challenge of being creative in your exercising techniques!!!

Hugs, Me

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DONNABRIGHT 4/2/2011 10:54PM

    Wow - amazing how much activity you are doing with that level of pain.

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SLENDERELLA61 4/2/2011 9:01PM

    Let me second what Vikki said. You are an inspiration! So sorry you haven't gotten what you need at Mayo so far, but am still hopeful that the specialists will be better than the primary. Sounds like you and hubby thought it through and made a wise decision, despite emotional reasons to do otherwise. It was great to see you today. May 9 seems a long way away. Sure hope the time goes fast for you. Hang in there, Cyndi. Regards, Marsha

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WILD4STARS 4/2/2011 8:22PM

    Do you know how many people in your situation would lay in bed and feel sorry for themselves? You are an inspiration to ANYONE and EVERYONE who has ever had to deal with pain. Sending prayers that they find a solution the works for you!

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My Second Trip To The Mayo Clinic

Saturday, March 26, 2011

This week hubby and I went to my second trip to the Mayo Clinic. I had my thoracic MRI first. One of the machines was malfunctioning so even at 7:30a.m. they were already backlogged. If I hadn't spoken up, I would have been late to my second appointment so I'm glad that I asserted myself in a very nice way. I got to the cardiac/vascular consultation barely in time - they require you to be there 15 minutes before your appointment. The good news is that the doctor for that consultation couldn't find anything that would cause the symptoms that I've been having. The one horrible condition that I've be afraid of is TOS and he was fairly certain that I do not have that. What a relief that was! Hooray! Hubby and I had several hours until my last appointment and we were hungry. We hopped in the car and took a ride through Jacksonville Beach to look for a place to eat a late breakfast or early lunch.

After lunch, we still had over an hour to wait before my appointment with my Mayo primary care doctor but I decided to check in anyway. Surprise! He took us right away. He said that he loves people who are early for their appointments. He went over all of my test results and said that I don't have any damage to the spine or nerves. He recommended that I do exercise or acupuncture. My mouth dropped open! Of course I knew that this glossed over version of my test results wasn't totally accurate. I had read the cervical MRI report myself and I could see the herniated disks on the thoracic MRI as he whizzed through it telling me there was nothing wrong. So I said the first thing that came into my mind, "No." I guess he was pretty surprised that I had told him no because he asked me what I meant. I told him that I had read the radiologist report for the cervical MRI, I could feel the pain, I could feel the limited mobility and I don't agree that it comes from nothing being wrong. That's when he said that the nerve tests showed that there was nothing pressing on the nerves or hurting the nerves so there can't be any nerve damage. (Keep in mind that they only did the tests on the right side even though I told them that the pain is on the left) They did notice, however that my body was overly sensitive to nerve stimulation. Therefore, they recommend that I deal with the pain through exercise or acupuncture.

I took a deep breath. I told the doctor that I had already been through physical therapy, shots, exercise, massage, doctors etc, the whole works. I informed him that up until the third week of December I attended water aerobics 4-5 times a week. The reason I was here was because exercise made my condition worse; but according to him there is nothing wrong with me. So, was it okay with him if I went back to my schedule of attending water aerobics since nothing is wrong with me?
Of course he said no but told me I could try a few minutes in the water. (Then what - like it's going to get better? He just wasn't getting it!!!) Finally he asked if I'd like to consult with a neurosurgeon the next time I come to the Mayo on May 9. Hubby and I both said yes. So, on May 9 I have a consultation with a neurologist/migraine specialist followed by a neurosurgeon consultation . The following day I have another appointment with my Mayo primary care doctor. I would rather have a different primary care doctor but I guess I don't get a choice.

  Member Comments About This Blog Post:

FITCOFFEEMOM357 3/28/2011 8:41PM

    I love seeing people take a postive and strong hold for their health. emoticon

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AMANDAJCD 3/27/2011 10:44AM

    Good job on asserting yourself. Is there any way to check and see if you can get a new primary care doctor at some point? Because he's telling you there's nothing wrong and CLEARLY there is something wrong... because if nothing were wrong, surely you could go right back to water aerobics, right?

It's so frustrating -- I'm sorry the news wasn't better, but YAY on that one condition being ruled out!!!

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DONNABRIGHT 3/27/2011 7:17AM

    Good for you - you MUST be in charge of your health!

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L*I*T*A* 3/27/2011 12:35AM

    way to go.....good for you!!!
praying you will get the answers you need ......
blessings and hugs...............lita

emoticon emoticon emoticon

Comment edited on: 3/27/2011 12:36:05 AM

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SLENDERELLA61 3/26/2011 8:36PM

    Disappointing. Really, really disappointing. That is so good that you can assert yourself appropriately when needed. When doctors don't know what to do I think it is easiest for them to say nothing is wrong. To say otherwise would mean they have to admit their limitations. So hope your next consultations are more productive. -Marsha

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WILD4STARS 3/26/2011 8:35PM

    When it comes to our health we have to be assertive. GOOD JOB !! Don't let them stop until YOU are satisfied with the answers! You go girl !!

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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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