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Saturday, August 13, 2011

I now have a neurosurgeon appointment on August 24. The doctor's office wants me to bring all of the disks of MRIs of my cervical spine with me. I will also bring those done before disk technology was as available such as before 2009. Apparently he can see growth pattern or something.

I'm still spending much of my day in bed resting both neck and arm. On a positive note, my motion is much better on the right side but the pain on the left is bad. I was able to carefully put on my floatation belt, keep my arms to my chest and kick my feet around in the pool on three days this week. The exercise helped my circulation and I think was instrumental in helping my right side move better. I do tire quite a bit so I come home and spend the rest of the day resting. It isn't much of a life right now but it beats the alternative. I look at it as being temporary until I can be fixed.
I have lost another pound. Yea me!

I am having a real problem dealing with stress. I gave up eating through it long ago and turned to exercise. Exercising (and over exercising) has caused me to have many injuries over the years. Right now most exercise is also out of the question. After talking to one of my doctors and my family, I've decided to keep a feelings diary as an outlet for anger, frustration and fear. I was also advised to have myself good old fashioned cry about once a week. I'm not a crier my nature - at least not for myself. I cry at sad movies and at the pain of others but almost never for myself. Plus crying gives me a headache and makes my eyes puffy. That brings up the question, why am I so empathetic to others and seemingly lacking in empathy for myself? I think that ranks right up there with putting myself at the bottom of the list. I'm going to make a note of this and chew on it for a while.

  Member Comments About This Blog Post:

DONNABRIGHT 8/14/2011 9:19AM

    So glad you have this appointment coming up. Maybe, finally, you will get some help so you can get on with your life the way you want to live it!

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TBRANCH2 8/13/2011 11:07PM

    You CAN overcome this just like you have overcome so much more in your life! You know that we are here for you just as you are here for us....Why don't you take this time for "rest and relaxation" and think about what you want to do when you get better....
Theresa emoticon

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L*I*T*A* 8/13/2011 7:36PM

    Cyndi........wish i had a magic wand...
here is hoping your appointment will bring you some answers....
prayers continue......
blessings and hugs......lita

emoticon emoticon emoticon

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WILD4STARS 8/13/2011 5:46PM

    Hope you're feeling better soon. I know right now that seems like an impossibility, but you're doing all the right things to head in that direction. I'm praying that you find a doctor that finds some answers and SOLUTIONS to all that you are experiencing. I can't imagine how helpless you must feel, and yet you keep moving forward, keep persevering! You are an inspiration.

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RUTHIEBEAR 8/13/2011 4:23PM

    I do the same thing with using exercise as stress relief. This past year I have way over exercised as the stress level has been off the chart. I admire you for continuing to try and exercise (at the pool) while experiencing such pain. I live with back pain so I know how hard it can be. I will be praying for your appointment on the 24th. In the meantime, take good care of YOU! emoticon

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IMMORTALTESSA 8/13/2011 3:28PM

    Cyndi, I am so sorry to hear that you are struggling with pain and emotions. I think that all mother's have a problem putting themselves first. I know I do it all the time. My kids, friends, family, and even strangers needs are all ahead of mine. I am so proud of you for finding a way to stay active even with the limitations. I seriously hope and pray that you find some relief and fast. Thinking of you. Tess emoticon

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SLENDERELLA61 8/13/2011 2:10PM

    Hope. Oh, I have so much hope that you will find answers and get back to having the real life you deserve, Cyndi. Your determination to get exercise despite the pain and limitations is admirable. The journaling is a great idea. Have you ever thought about life writing? I know WildforStars is doing it right now. There is a wonderful teacher here in Lakeland and the groups tend to get close and supportive. Take care, Marsha

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Flat and In Bed

Sunday, August 07, 2011

For two days now I've been in bed due to severe pain and the inability to move my neck and left arm. All I did was grab a beach cover up and pull it over my head to take the dogs outside. Voila! Instant pain and I'm flat. On a positive note, I've been hurting too much to do any extra eating so I've stayed with my plan.

The neurosurgeon at Tampa General is supposed to review my records tomorrow and decide if I get an appointment. I sure hope so.

  Member Comments About This Blog Post:

IMJETTA8 8/15/2011 7:59PM


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FITCOFFEEMOM357 8/10/2011 11:35AM

    Cyndi ~ I hope you get the appt.

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DONNABRIGHT 8/9/2011 8:20AM

    Oh, no! Your beautiful attitude shines through no matter what you are going through. I hope relief is just around the corner for you.

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SLENDERELLA61 8/8/2011 7:23PM

    Oh, Cyndi. So sorry you are going through all the pain. We'll just hope and hope for that Tampa appointment -- or a miracle. Take care. Know your whole team cares. We missed you at the walk. Hope you can re-join us soon, feeling 100%

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L*I*T*A* 8/8/2011 12:10PM

    so sorry to hear about your pain....
hoping and praying you will have some resolution soon .....
blessings and hugs............lita

emoticon emoticon emoticon

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WILD4STARS 8/8/2011 5:37AM

    emoticonHope someone is able to help you soon.

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My Symptoms Match C-5 C-6 Problems The Doctor Says

Wednesday, August 03, 2011

The doctors told me yesterday that my symptoms match problems with the C-5 C-6 area but the issue on my MRI looks like it is an old issue because the disc is calcified even if it is sitting on a nerve root. I tried to explain that as it gets larger my symptoms worsen but they don't seem to understand what I'm trying to say. I think they are looking for something else that is new not something old that is growing.

The doctors were surprised that Mayo only did a nerve test on one arm. Apparently a doctor almost always does it on both for comparison purposes. In my case, they didn't do it on both they just tested my little finger instead of testing my whole arm. When I had it done years ago they did it on both arms too. Now I'm beginning to feel uneasy about the data that I got back from Mayo because I think it was incomplete. Drawing conclusions or making assumptions from incomplete data is a risky thing to do - at least from my perspective as the patient. My Tampa doctor has to order a new test because the left arm was never done and it is the arm that I'm slowly losing use of. I have that test scheduled for the first full week in September. My doctors have also given me a referral to see a neurosurgeon for a consultation to see if the calcified disk at C-5 C-6 can be removed to give me some relief and possibly give me back the use of my left arm.

This has given me some very slight hope although my trust in doctors in general is fading fast. I know that there are some wonderful doctors out there - I have been to a few of them. I guess I've become disillusioned with people in general when they don't do the right thing. The reason my doctor asked me to come in yesterday was because she said there is a difference between a test result and a patient. Test results are just pictures, patients have feelings and can communicate their pain and symptoms to a doctor. Doctors must have both to be a good doctor.

  Member Comments About This Blog Post:

L*I*T*A* 8/3/2011 10:25PM

    hoping you and your dr's will be able to fit the pieces
of the puzzle together soon....
praying all works out for the best...
blessings and hugs.........lita

emoticon emoticon emoticon

Comment edited on: 8/3/2011 10:26:03 PM

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SLENDERELLA61 8/3/2011 5:08PM

    Nuture that "slight hope"! This has gone on and on. So hope you get answers and effective treatment. Take care, Cyndi. I do admire your tenaciousness and persistence. Keep up the good work and good attitude.

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I Now Have An Appointment To Discuss Options

Wednesday, July 27, 2011

I took a chance, dug my heels in and said Botox won't make my arm or neck better. If I still have headaches after they are fixed, then I will have the shots but no more chemicals are going into this body until we fix the problem. I was almost afraid my doctor might tell me to find some other doctor to treat me (she still could but I don't think so). The nurse told me that my doctor herself had reviewed my MRI and she wants me to come in so we can go over some possible options for treatment. While I was on the phone I asked them to fax the MRI radiology report to my team coordinator at the Mayo in Jacksonville and I gave them the fax number.

What I would like is for someone to fix me. I have a disc at C5-C-6 that is particially calcified and it's getting bigger and bigger. I'm losing the use of my left arm because using it causes such pain in my neck. The neck pain then moves up into my head. Even just the weight of the arm itself can set it off or even some body movement some body movement do it. Then I'm flat for the whole day. I have to take serious nerve medication at night just to be able to function (it tastes yucky!).

Perhaps it was the mention of the fact that the osteophyte at C-5-C-6 isn't actually and osteophyte but a calcified disc that got them going - I really don't know. Maybe they think I'm just being difficult but at this point I don't care because I've had enough pain and need relief. I was thrilled when they called me back about 20 minutes later and want me to come in next Tuesday morning. I'm keeping my fingers crossed. I hope someone can make me better!

  Member Comments About This Blog Post:

RUTHIEBEAR 7/28/2011 2:33PM

    Praying you get some real answers and relief this time. Keep being a self advoctae! emoticon

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SLENDERELLA61 7/28/2011 9:57AM

    Me, too, Cyndi! You deserve relief. Wishing you all the best!

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DONNABRIGHT 7/28/2011 9:41AM

    Here's hoping with you! It just amazes me in this day and age that it sometimes takes so long to find and relieve the problem. I am still struggling with chronic iron deficiency and will start transfusions tomorrow to get it up but the underlying problem is still a mystery.

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L*I*T*A* 7/27/2011 10:38PM

    keeping fingers crossed for you too...
hope you find the relief you are looking for soon....
sometimes the journey sends us on many paths!!???
blessings and hugs...............lita

emoticon emoticon emoticon

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TBRANCH2 7/27/2011 10:37PM

    Good luck and keep us updated!!

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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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