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The Squeaky Wheel Got An Answer

Saturday, July 23, 2011

I got a call back from my Tampa doctor yesterday! Hooray! When my two MRIs were compared, my most recent one did show further damage from the last six months. That has to be the reason that I'm having such difficulties using my left arm. I was shocked that no they hadn't compared the two before calling me earlier in the week. This time the same "fellow doctor" that had examined me also took a look at the MRI. He recommended that I try Botox shots which I had started when I had such a terrible reaction to the epidural injection in December. The adverse reaction to the shot seemed to undo everything good about the Botox injection. However, the Botox injections do nothing for the problem with my arm. I told this to the nurse who called me with the news. She said that the shots take three sets to actually work. What she said next really threw me for a loop. She said something to the effect of since you got so sick with the injections the last time, I guess you want me to tell him no on his second recommendation which is an injection. I was stunned. After going rounds with me and his boss during my appointment and after her telling him that injections might be very bad for me, he still was pushing them for me??? Whoa!!!

My answer was crystal clear. No way to the shots. I'm willing to try the Botox. I'd like a referral for a consultation with a neurosurgeon. Reason is, that isn't an osteophyte that is growing, it is a calcified disk that is growing. Please read the notes from the Mayo Clinic. The nurse laughed and told me that she thought I was a very reasonable person and I should have a consultation. I again thanked her profusely and told her that she's the best! I feel like she is my advocate over there. We'll see what they come back with.

The moral of the story: Be your own advocate. Take care of yourself and don't let others walk all over you. The old me would have just let them push me around. The new me ain't buying it! I have to protect myself as much as I can. I know that doctors are supposed to have my welfare at heart but the reality is, they see lots of patients and they may not really remember me specifically. Scary isn't it??? I am worth the effort it takes to become healthy!

  Member Comments About This Blog Post:

RUTHIEBEAR 7/24/2011 10:16AM

    I totally agree with you. I have learned this lesson the hard way also. Doctors are not God and they do not know us as well as we know ourselves. Continue to step up and speak up for what you need! Keep us posted. I sure hope you get some real help and answers soon. emoticon

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JANEWATKINS 7/24/2011 9:35AM

    YOU GO! I'm all for finding an office advocate. I found mine at my orthopedic surgeon in his nurse, Stacy. I get right through to her now that she gave me her private number. It makes all the difference. I'm so happy for you and feel that you are on the track now to begin to improve. Hurrah!

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L*I*T*A* 7/24/2011 12:42AM

    emoticon emoticon emoticon emoticon emoticon

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PUGRAD1995 7/23/2011 8:34PM

    As a medical technologist I have never had a problem telling the doctors no-but I'm glad you found an advocate also. Keep plugging-and trying things until you get the help you need!

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DONNABRIGHT 7/23/2011 4:59PM

    You are worth the effort and don't let them forget it. I've become more aggressive lately, also with doctors and it feels good to know I can do it.

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SLENDERELLA61 7/23/2011 2:52PM

    You are very wise to become knowledgeable about your condition. Clearly doctors make a lot of mistakes. Medical science isn't perfect, and even when they practice to the highest standards based on currently known data, they miss a great deal. I find dealing with doctors, doctor's offices, insurance companies, and the like very, very frustrating.

Take care, Cyndi, and thanks for your ongoing support. I'm glad you are an effective advocate for yourself. -Marsha

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Dealing With Frustration

Wednesday, July 20, 2011

I spoke to the nurse at my doctor's office for the results of my MRI this afternoon. She told me that my results were normal. I asked her how that could be possible when they weren't normal the last time. I have a progressive, degenerative disease and although I'd love to be normal, improvement is not what is usually reported with my MRIs. So the poor nurse pulled out my last MRI and compared the two and said that she saw very little change but she isn't allowed to actually give any diagnosis like that. She didn't think that the "fellow doctor" had done that. I also asked her what the "fellow doctor" thought was causing me to lose the use of my left arm and have issues with the left side of my neck and head when I did try to use it. She said that there were zero recommendations for me other than to increase the amounts of my medications. She said she would put a note on my chart requesting a re-review and raise the questions that I had asked. I also asked her if she would send me a copy of the radiology report and thanked her profusely. We'll see what happens and if they call me back and tell me anything different. I'm not holding my breath.

After I got off the phone, I felt overwhelmed with frustration and anger. I began to question whether or not my pain was even that bad or even imagined. Maybe I'm just blowing it all out of proportion. Then I remember the shocks inside my head and the tremendous kicks of pain in my neck and head. I see the tremors in my hands and hear the popping when I turn my head. I remember my pasty complexion and eyes glazed with pain and muscles jumping in my left arm after an episode and I know I'm not crazy. I know I just need to suck it up and keep knocking on those medical doors. I will eventually find the answers that I seek. I am worth fighting for.

On Monday, July 18, my team at Mayo supposedly met with the neurosurgeon. I haven't received a telephone call from my coordinator (and I probably won't) so I expect I will receive a letter in the next few weeks from them. Something about their attitude tells me that I won't receive much help from them either, but I could be pleasantly surprised.

The good news is that throughout it all, I am eating a healthy diet, staying with my plan, doing a modified exercise program, working on getting 7-8 hours of sleep, drinking 8+ glasses of water and battling my stress. I am tending to overdo my exercise in the pool because it is a stress outlet for me. I'm forcing myself to take 10-15 minute exercise days because I can see a pattern of over exercise forming and I want to break it. We'll see how it goes.

  Member Comments About This Blog Post:

JANEWATKINS 7/23/2011 9:46AM

    It seems that we have to certainly be our own best advocate. I'm glad you pressed back on the nurse. I think you need to keep pushing . . . and perhaps call the coordinator at Mayo. I worked for many years at medical schools (academic medicine) for physicians who saw a few patients a week in and around their research. To quote an Oprah line, "One thing I know for sure" in the medical field is this: the squeeky wheel truly does get the grease. So SQUEEK!

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DONNABRIGHT 7/21/2011 9:30AM

    My gosh, I can't believe you can't get answers in this day and age! Where is Marcus Welby when you need him????????????

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L*I*T*A* 7/20/2011 11:32PM

    so sorry to hear your frustration...
let's hope you get some news to help you
you are one amazing woman!!!
blessings and hugs.............lita

emoticon emoticon emoticon

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AMANDAJCD 7/20/2011 7:16PM

    Oh Cyndi, I'm so sorry about the frustration. I'd be chewing paint off the walls at this point emoticon

You are doing amazingly well with controlling the things you *can* control, though -- I am incredibly impressed! Way to go emoticon

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I Got The MRI Done!

Friday, July 15, 2011

I had my MRI done yesterday. Hooray, it is now finished and out of the way! I even asked for a disk of the images and they made one for me even though there isn't even a radiologist report yet. By the time I was finished I looked like a pin cushion from all the sticks for the IV dye. I also had a massive headache from the pressure on the back of my head where I had to lay flat on my back on a hard surface for well over an hour. I crawled to the car and drove home and went to bed. I didn't even sign on to Spark People. Hubby was such a sweetie! He made sure I was okay and took me out for something to eat after I'd taken pain medication. I had very little appetite and mainly just wanted water. After lunch I crawled back into bed and spent the remainder of the afternoon there.

This morning I felt much better and got up and did a happy dance that the test was over. Even the three stick marks didn't look too bad! I went off to do my aqua exercise and was able to spread the Spark to several more people at the pool. Hopefully we'll have 4-5 more people join us at the next team walk!

  Member Comments About This Blog Post:

SLENDERELLA61 7/17/2011 11:36AM

    Can't wait for the report and recommendations. So hope you get the help you need. This has been an ordeal.

Thanks for recruiting for our team. The more the merrier!!

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DONNABRIGHT 7/16/2011 11:56AM

    I'll join you in that happy dance - always good to get through yucky tests. I've had a fair share of them lately!

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MANGOKAYAK 7/16/2011 6:16AM

    Glad you have gotten through the MRI and I will be thinking of you.

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DIFROMWYOMING 7/16/2011 12:11AM

    I truly hated having one of those, so i can empathize. Glad you took care of yourself.

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L*I*T*A* 7/15/2011 10:24PM

    fingers crossed for good results....
so glad to hear you are feeling better too...
blessings and hugs.......lita

emoticon emoticon emoticon

Comment edited on: 7/15/2011 10:24:44 PM

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MIZPAM25 7/15/2011 9:32PM

    Glad you are feeling better, pray your test results are good! emoticon emoticon

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MARGIE4230 7/15/2011 8:49PM

    Hooray for you and trust you will get a good report !

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My Updated MRI Is Scheduled

Tuesday, July 12, 2011

My updated MRI is scheduled at Tampa General for Thursday at 7a.m. I've had my blood work done so I can have the dye part of the test and it should all be a go for that morning. I hope their equipment will be "cutting edge" like Mayo since it is a teaching hospital. Perhaps the doctors will be able to get a better idea of what is giving me so many problems.

  Member Comments About This Blog Post:

JANEWATKINS 7/14/2011 7:33PM

    How'd it go? I've been thinking about you . . bunches!

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AR0516 7/12/2011 2:46PM

  Best of luck on the MRI, my thoughts will be with you

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TBRANCH2 7/12/2011 12:36PM

    WOOHOO, good for you! I am glad that you are being demanding where your health is concerned! I have always taught my daughter that if you don't fight for yourself and what is right, noone else will either!! Good luck and keep us informed!

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SLENDERELLA61 7/12/2011 12:25PM

    Hope it goes well, Cyndi, and you find out just what is needed. Thanks for introducing me to Pam, the teacher today. Made it easy to join in. I'm sitting with the rolled towel as I type right now and think it is helping. Thanks again. -Marsha

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L*I*T*A* 7/12/2011 8:03AM

    all the best with the tests...
hoping with fingers crossed you will have the answers you seek.........
blessings and hugs.............lita

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DONNABRIGHT 7/12/2011 7:02AM

    Maybe this time you'll get the answers you need to feel really good again!!!!!

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MADYANKEE 7/12/2011 1:14AM

    goof luck with the tets and hopefully the results will give you some answers.
Praying for you.

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Mayo's Schedule and Mine

Thursday, July 07, 2011

I am so glad that I called my neurologist/migraine specialist at the Mayo. He called me right back that afternoon and told me that I should have called my local neurologist right after the pool incident happened. What local neurologist? I'm saying that here- I didn't tell him that- but my local guy told me that there was nothing in Central Florida that could help me and handed me off to the Mayo. I did explain to my Mayo guy that I had an appointment with my Tampa Hospital neurologist/migraine specialist Tuesday, July 5 and that seemed to appease him somewhat. He made me promise that I would bring it up as soon as I got to the appointment on Tuesday. So, when my Tuesday appointment was cancelled (even though I was at the office) I insisted upon being able to leave a message on the nurse line so I could keep my promise. My Mayo doctor also told me to go ahead and schedule another MRI at the Hospital this time to see if we can get a better idea of what is going on with my cervical spine. (Especially since the rest of the Mayo team appears to have dropped the ball.) He was very surprised to hear that I had not received any further communication from the team and that the meeting with the neurosurgeon hadn't taken place. Interesting!

With that in mind, after my first botched attempt at an appointment with my Tampa neurologist on Tuesday, I decided to follow up once again with my team coordinator at Mayo. My team coordinator doctor never returned my call from June 22 (which is why I went around him and called the neurologist/migraine specialist). When I called this time I explained that I had left a message on June 22 and he had never called me back. I asked the woman in his office if he got my message. You won't believe the answer!!! She said, let me check the notes. "Oh, yes, he got the message. After getting your call, he scheduled a meeting with the neurosurgeon and the neurologist/migraine specialist." I asked when I'd be getting the notes. She replied, " The doctor is on vacation until July 13 so the meeting won't take place until July 18. After that time the doctor will send you a copy of their notes and recommendations."

After hearing all of this, a little light bulb went on in my head. I had an ah,ha moment! What they will come back and tell me is that I need an updated MRI. That's why their neurologist told me to go ahead and get a new one! So this is how the game is played.

At my re-scheduled appointment with my Tampa neurologist yesterday, I told her and the "fellow doctor" who was studying under her, that I need an updated MRI. I explained that my symptoms have worsened since my last one and she showed the doctor how to fill out a prescription for that so it will be covered by insurance. (It was pretty cool actually) He wanted to make sure for himself so he wouldn't be committing insurance fraud so he rotated my head this way and that and pressed on my neck. The end result was that he gave me a giant migraine and said, "Oh my, her symptoms really have gotten much worse haven't they." I wanted to hit him but couldn't fault him for wanting to make sure he told the truth on the prescription form. However, my doctor knows me and could have stepped in at any given time, but it is a teaching hospital.

My MRI is July 14. Sometimes you just have to take matters into your own hands. I wonder how long the coordinator at Mayo would have waited if I hadn't called. I am so glad that the neurologist at Mayo told me to get an updated MRI. Something tells me that the results of the July 18 meeting are going to be, get an updated MRI and I will already have it in hand.

  Member Comments About This Blog Post:

AQUAGIRL08 7/8/2011 3:33PM

    Thanks everybody. I'm getting quite good at jumping through hoops and pounding on medical doors. My frustration level is quite high but I'm like a dog with a juicy steak bone and I'm not giving up for anyone! This is my life we're talking about and perhaps the doctors get callas over the years but I've got to advocate for myself or die trying. As SLENDERELLA61 said I am tenacious as all get out!

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SLENDERELLA61 7/8/2011 2:16PM

    The medical system is just so frustrating! I admire your tenacity. I am hopeful that you will -- finally - receive the diagnosis and treatment that you need. I know that most of the things I suffer from, and thank heavens they are mostly minor, they don't have treatment for and some of the things they try make it much worse. I have learned that it really helps to develop things that are typical. They know how to treat typical.

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DONNABRIGHT 7/8/2011 7:52AM

    So sorry your symptoms have not gotten better. I sure hope you can get some answers at the next meeting. Prayers are with you.

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RUTHIEBEAR 7/7/2011 1:50PM

    As someone who has had to jump through hoops and pound on medical doors to get the help and attention I need, I sympathize and comment you for taking matters into your own hands. emoticon

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