Sunday, February 09, 2014
I am officially very frustrated--my story is not a fun one. I went to Mayo this week with the intentions of gathering evidence to help me to make one of the most difficult, yet important decisions of my life. I went expecting to gather information that might not agree with what I already understood. I actually wanted a bit of that because it would help me to decide if these dual back-saving surgeries that will put me out of commission for months was what I needed. I came supplied with the names of the docs who specialize in adult deformity of the spine, lordosis and hyper-kyphosis. I also expected to spend a few days in their fibromyalgia clinic to attend a few classes and to learn more about this condition that I am diagnosed with and that seems to give every other doctor the right to blame my issues on fibro and not to look any further.
That's not how it played out...
I had my initial interview and the staff and I agreed that the issues with my back were the large, looming needs that I needed to take care of--so we decided to put my work with the fibromyalgia clinic on hold and focus on my back. I shared the names of the doctors I needed to see with two different people at mayo that day and asked how to make that happen. The main person I was dealing with agreed that they were important to me and that was the end of that. I went to have yet more X-rays of my lumbar spine and then the MRI. On Wednesday, my big appointment was for my surgical consult.
That appointment was not fun. I went to the appointment and told the receptionist the names of the docs that I needed to see. A nurse came to get me just as my husband had left for the bathroom, so I went on my own. She took me to an exam room and a man who I thought was a doctor came in. I again told him part of my story and shared the names of the docs I needed to see. He smiled and went on to go through my pictures. I will spare you most of the details of that event but a couple of them were important. One is that even though I believed I had had an L3-L5 fusion, it turns out that it was L2-L5--and the comment was made to me that I have a "funky anatomy." The other thing is that is clear that I have had a major fracture of my T12 vertebrae. Even I could see it and that is exactly where my spine tips in the wrong direction.
This guy's attitude was that there was absolutely no reason to do any surgery and that all of the other docs are wrong. He told me that the area they want to treat will not relieve my pain. He was loud, overbearing and found ways to get me in tears and to question every person who I have seen for medical care. He worships the first doc I saw and told me that I should just wait for the RF ablation to work--and if it doesn't, I need to "buck it up and bear the pain. There's nothing that can be done for" me. WOW, I left in shock. I talked to my husband and we started going through everything I heard and know and that we knew. We took our son (who came with since his birthday was Tuesday) and went to the Mall of America for a special shopping trip and headed home.
When I got home at 2 in the morning, I was not able to sleep. I went online to my Mayo Clinic chart. That "doctor's" report was already there and it was brief, but the thing that shocked me was that he was not a doctor at all but an RN with additional certification. Now, I have no problem with nurse practitioners, but I requested their top specialists in the area of adult spine deformities. I sure didn't get that and I got someone who wasn't even kind or gentle or thoughtful in this life-threatening decision I have to make, someone who doesn't know me and was singing praises towards me doing nothing and living with this. He called fusion procedures a way to "kill my joints and ruin my body" and told me that I needed to "quit having surgery." Oh boy.
The second thing that got my attention was the report I requested for the endocrinology clinic at University Hospital. I read it and realized that the report I was given over the phone from someone at my OB-GYN's office was wrong back in October. I was told that I had osteoporosis in my left wrist, but not in my hips. This letter clearly said that I have osteoporosis. My hips degeneration percentage was bigger than that in my arm. Wow, could that have a role in my fractured back vertebrae? How about the broken rib I am still recovering from? I am feeling bewildered and certainly let down by medical people.
I had an appointment with my pain doc on Friday. I was pretty time-consuming with what I had to share and he listened to it all. He really hesitated and told me that he didn't want to be disparaging against any medical people that he would be very upset at what had taken place and he encouraged me to write a letter to Mayo, complaining about the entire episode with me not being allowed to see a doc who I had requested multiple times. I am going to write that letter--I won't go see them now though because I don't believe that I will hear anything else. I am sure that if they have a nurse doing these kinds of appointments, it is justifiable in their thinking and my situation falls into how they deal with that. I also guess that this guy is well-versed in how they discuss things, so I would hear the same no matter what. The other thing my pain doc told me is that if it were him, he would disregard everything that was said by someone who seemed so opposed to seeing me as an individual and was able to be overbearing and okay with making me cry. I have decided that that was also good advice.
That means full-steam ahead. I am going to call for my medical records on EKGs and the like from the hospital of most of my surgeries on Monday and I will keep my appointment at University of IA on Wednesday for a pre-surgical work-up. I am starting to wean down on my fentanyl prescription tonight when I change my pain patch. We are going to cut it back from 75 mg this month to 50, next month from 50 to 25 and then I'll be off of it. My pain doc also gave me dual injections in my SI joints because he said that this is not going to be an easy process and he wants to help me through in any way possible. My oral meds are staying the same. I am definitely nervous about this. At the end of the month, I will see the folks at the endocrinology clinic with the true report from my bone scan and they will s=determine if my osteoporosis needs treating. My doc did share with me that there are people who practice medicine and they make mistakes--that is why it is called practicing. Some miustakes, unfortunately happen. However, the thing that went on after my multiple requests at Mayo to see the docs who treat my condition went on deaf ears, that is more than a mistake.
So...here is where I am. A few other things went on in this same pattern-- part of my son's case in court has been thrown out because it turns out that the lawyer we hired and paid dearly for was employed by the city who was responsible for his arrest. He took a lot of money from us and was dishonorable. We saw another attorney on Saturday and we have a lot of things we must do on that, but my son may get a better outcome than originally. It turns out that the original judge has also recused himself.
I won't go into what has been happening at work except I have been told that I am missing too much work. It is understood, but "something has to be done about it." What? I don't know what that is. I don't know anything yet--I am feeling pretty disillusioned about anyone in power really caring about other people. This week, with what has went on in every profession connected to my world, it is hard to think objectively about this. I am really a person who believes in people, so all I can guess is that it was my week to run into the bad ones all at the same time.
I'll keep you updated and am surely interested in your thoughts on all of this. Take care, my friends!