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.
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.
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!
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