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Wednesday, March 30, 2011

My Mayo Clinic Adventure - Getting Answers on Day 4

a cactus blooms in front of the Mayo Clinic Arizona
Day Four - Thursday, March 17

8:00 a.m.: It's another early appointment, but instead of tests, today I get some answers. So after a quick breakfast at the hotel, the first one I've been able to eat with Robert in three days, we are back in the car heading down Shea Blvd., bathed in the early morning sunlight. On the drive over we talk about the progress the road construction crew has been making over the past four days resurfacing this busy street.

With the same efficiency that was the hallmark of my first appointment on Monday, the check-in process is a breeze and the wait time minimal. We find ourselves once again sitting on the couch in the examination room for just a few minutes before Dr. Goodman walks in and joins us.

As Dr. Goodman begins to speak I focus all my attention on him and try to absorb each and every word he says. A few minutes in, I suddenly realize that I should be taking notes. I glanced over at Robert and see him typing away on the keyboard of his Blackberry smartphone. Sure enough, he seems to have read my mind and has been taking notes for me.

In that moment, my gratitude towards him grew exponentially.

Based on my recollections and his detailed notes, here's a summary of Dr. Goodman's preliminary findings:

  • Based on the EMG and nerve conduction study, as well as comparing the current results to my previous study at UCLA in 2005, it is clear that my carpal tunnel syndrome has gotten progressively worse and his recommendation is for surgery to decompress the median nerve.
  • Because of my complicated medical history, he is unable to discern the cause of my orthostatic intolerance. He is also concerned that, unlike most patients with orthostatic intolerance, the condition will not get better over time and with age.
  • He expressed his disappointment that I was unable to get a consultation appointment with the Mayo Clinic Hepatology Department and encouraged me to keep my appointment with my hepatologist at UCLA in June. He remains concerned that my chronic hepatitis C infection is playing a role in my orthostatic intolerance.
  • Based on the EMG and nerve conduction study, there is no evidence of diabetic neuropathy, which means my efforts to tightly control my blood sugar have paid off.
  • Next he moved on to his treatment recommendations:
    • He changed the beta-blocker that I have been taking to another one in a different class. He feels this alternate beta-blocker will better address my symptoms of tachycardia and blood pressure fluctuations.

  • Because my blood pressure during the autonomic testing bounced between the hypertensive, normal and hypotensive ranges, he wants me to keep my salt intake in the moderate range, at about 4 g per day.
  • He also suggested that I drink 2 1/2 liters of water a day, but went on to say that some of that daily intake should be an electrolyte enhanced beverage.
  • In addition to the new beta-blocker, he also prescribed a medication called Mestinon which he felt would help my symptoms of fatigue and heat intolerance.
  • He remarked that my allergy medication and my prescription sleep medication can both impair my sweating response.
  • He recommended I elevate the head of our bed six to 8 inches.
  • As I mentioned earlier this week, he provided me with detailed instructions on incorporating exercise into myself self-care plan and gave me a patient education handout entitled Exercises to Help Manage Orthostatic Hypotension. (I will try my best to include a copy of this document in my Thursday Mission 2011 post.)
  • Together we decided that it would be best for me to return to see him on an annual basis so I could take advantage of any new treatment options or advancements that might occur over time.
  • At the end of our time together, he let me know that he did not have the results of my blood tests nor did he have the results of the Holter monitor--which I was still wearing at the time. He let me know that he would be calling me towards the middle of the next week to give me the results of these tests. If I didn't hear from him by Wednesday, I was to call him.

    As Robert and I headed out of the examination room and back to the waiting room, I once again asked him, "So what do you think?" This led to a long conversation that began in the waiting room and continued as we went down the elevator, to and from the pharmacy and back to our car. In the process, Robert and I reviewed all the information Dr. Goodman provided me as well as his treatment recommendations.

    We both felt that this trip to the Mayo Clinic Arizona was well worth our time, as it provided new information about and new treatment options for my dysautonomia. We both felt reassured that being connected to a real expert in this area meant that I would be getting better care for this condition. We decided it would be worth our time and effort to come back every year to see Dr. Goodman.

    After this appointment, we headed back to the hotel to rest and have lunch. Then headed out in search of some some cactus candy to bring back home with us.

    3:30 p.m.: We returned back to the cardiology clinic to drop off the Holter monitor that I have been wearing for the past 24 hours. The technician had shown me how to remove the electrodes on my own, so all I had to do was place the device in the bag she gave me and hand it to the receptionist at check-in. We then headed to the pharmacy to pick up my two prescriptions and discuss with them how to go about transferring these prescriptions to my local pharmacy.

    With the completion of these two tasks, my time at the Mayo Clinic Arizona came to an end. But in terms of my dysautonomia-related medical care, this is just the beginning. Over the next few months I will learn how this experience will affect the quality of my life with dysautonomia and my other chronic illnesses. And, of course, I will be sharing those results here with you.

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    5 comments

    Migrainista said...

    So glad to hear that you both felt it was worth the trip.

    ashpauls said...

    *big hugs* I read this post second. It is never easy hearing new news on our health problems. Have you decided based of his recommendation that you will have the surgery for carpel tunnel? I am also sorry to hear they couldn't find out what was causing the orthostatic tolerance, so hopefully this test at ucla might clear this up. I am happy for you that your diabetes has been worth the hard work you've put into it, and that he wants you to come back every year. That is a great outlook, and hopefully this new drug for heat intolerance, etc. and the new beta blocker will work wonders for you!!!

    Judy said...

    Selena, I am excited for your help from the Mayo Clinic! What a privilege!

    I am also excited to refer you to this website about Fulvic Acid drops to add to your water. My M.D. told me about them. Awesome awesome stuff. You may agree once you read the info!

    http://www.optimallyorganic.com/Fulvic.htm

    Judy

    Ripples In Water said...

    What an incredible and fascinating week! Thank-you so much for sharing your experience! Will you keep us posted on how the new meds/tests/appointments go? I hope they help!!!

    Healing Well said...

    So glad you were able to get help there. I don't know how you keep track of all those recommendations! That's what your blog is for right :)
    ~ Peter