Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 07-12-2007, 03:03 PM #1
tshadow tshadow is offline
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Heart Hospital Fourth Time, Better Doc

First, thank all of you for your kind words of support. They feel good. I'll have to remember that and be more supportive in my posts also.

I got new diabetic meds and took them and had a rather quick allergic result. So daughter rushed me to the closer good hospital. And again, I got excellent care! (Education isn't until next week, and it was going to be a month but they got me in a cancellation!)

The doc listened to me about the underlying TOS, and he observed the flushing / redness about the chest / face that so many of us get, and he wanted to make sure I wasn't suffering from TIAs or significant loss of blood / oxygen to the brain.

So finally I got a brain MRI! He also got me a neck MRA! Both were normal!

No MS!

He even didn't mind that I had a collateral reason for wanting the MRI for the MS question.

And then, he put his hand on my ankle and gave me a squeeze and said, "at least now you can rest easier with these questions answered." He thinks the severe dizziness may also be ear related, so just in case, he gave me a script - how unusual is that? What a gem.

There are good ones out there.

Then, I fired my home aide. She doesn't communicate well with me - I believe on purpose - and at this point, she's done things with my food that will kill me. I explain "light" doesn't mean "no sugar", etc., etc., and I can't even list the errors she makes, because, she doesn't care.

Fiance says the home aides don't like me, because they see me, and I "look fine." Then they see me sleep during the day, have a nice big t.v. that I watch when I'm awake, and they think, "she's a lazy..." No matter how nice I am to them, thoughtful about their issues, family, etc., (and I am, but don't want to sound like Mother Teresa here), they tell me they aren't paid enough, ask me for thousands in loans, don't want to give me any personal care - they actually say they hurt or this or that reason why we need to do it another day, and don't show up or call and act like I shouldn't have a problem and just take care of myself.

Don't get me wrong, I am VERY thankful that I have this service 12 hours a week. But it's a weird phenomena that with TOS they really think we're ok. In fact, she said today, "you need to tell me when you need your meds, or you need to show me and teach me how to cook" I told her I don't have the brainpower to do that anymore. She's 50 and goes to massage (PT) school at night, and she's very good at it, (as I've said, she's gifted!) but now IF she does it, she complains the whole time about how she's not paid enough, etc., and I pay her separately for the massages...And I just am not able to teach someone older than me how to cook these days, or set up more charts, etc., as if I were the home aide. By the way, she IS a CNA. She also runs a side-business of housecleaning which she made the phone calls from my house while she knitted, AND she's got a big work comp claim!! (I hate to say it, but there you go, she's got a major work comp claim, and yet she's working a physical position and has a side business and work comp doesn't know either. THAT's why we all get such trouble, folks, with OUR good faith claims. Don't ask me how I know all this...I'm having a real internal ethics battle right now about it...)

So anyways, time for a TOS meeting, doesn't everyone agree? Fiance has learned how to make home-made green chile verde (pork) on rice, and it's INCREDIBLE. He'll make it mild for us, with his home-made vanilla ice cream. All are welcome as usual. Let's find a date.

No ice cream for me.
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Old 07-12-2007, 03:28 PM #2
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Default O Geeze...

I'm happy to hear u r ok
Home
Tests accomplished with results we want to hear
Now to get ur insulin leveled
I promise not to bring u anything sweet
Except for me...HAHA

I'm off
PT FAB today and cannot screw things up
I just get so dang bored
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Old 07-12-2007, 05:34 PM #3
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I can't believe she was knitting and doing a side business on your time!!
But then again .. I suppose it is all accepted as the "norm".
errghh - sheesh!!!

Sounds like one of those kinds of people that abuses the system and that affects all taxpayers as well as truly injured workers.

I hope you can find a good and trustworthy one soon.
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Old 07-12-2007, 06:20 PM #4
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Tam- warm thoughts and i really really hope you can get control of this.

my weekends are crazy, so just pick a date and I'll do my best to get there....

*hugs*
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Old 07-12-2007, 08:45 PM #5
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Tam I am glad that you got good medical care, gosh it is so frustrating to get anything more at an ER then a Advil reference and follow up with family doc.

I just wanted to ask if they rule out the meds used for nerve pain? My De had seroquel gave her diabetes, at 560. She was on insulin shots in the hospital when she had the arm surgery Feb 2006.

When taken off them, and trial and error, her diabetes went away.
Hope you can reslove the ear problem.
Feel better soon,
Di
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Old 07-12-2007, 08:49 PM #6
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Tam I am so glad that you were treated better this time around.

P.S. If we do have a meeting my MAT therpaist said he would be willing to talk to the group.
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Old 07-12-2007, 08:53 PM #7
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Heart

Di,

they have given me Seroquel also, but I am not taking it. I learned my lesson with the Lyrica.

Since I"ve had TOS since 02, and I've had frequent blood work with my personal doc for ten years, (I've always maintained good health), I can show that I never had any high or abnormal blood sugar until into the Lyrica in 05 I believe. My doc is pulling those records and going to analyze it. If it looks like it relates to the Lyrica, and since the Lyrica was prescribed for the TOS, it will be added to the work comp injury. If it is not, I was already 100% disabled, and you can't get more disabled - they just aren't responsible for any medical treatment for it.

I hope that answers the question. (There are times when work comp docs do have to apportion a work comp injury and a later non-work comp injury, but again, since I was already well into a 100% disability injury, that won't apply in my case I believe.)

God bless you Di and your DeAnne in heaven above us.
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Old 07-13-2007, 02:11 PM #8
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Hey TShadow,
I hope you are doing better also It is sad when we as I/W have to fight for everything we need and have to prove everything over and over and cannot even do any work! To see that some one can scam the system in front of you must be hard knowing what we all go through I'm sure you will do what is right, and for this person doing this I say what come around goes around!!!

I hope you all in Cali have a great meeting share the knowlegde and help each other, relax and think of something else for a while. I have learned alot but do not feel comfy in talking to much here- (I KNOW) what you all are thinking
I wish you all well in Cali!!!
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Old 07-13-2007, 03:01 PM #9
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I am new to this site after many years. I just wanted to say that it is nice feeling support from everyone. I wish I lived in CA to join you for your TOS meeting, but, in NJ, it would cost too much. Have a great time and hope everyone has a good day! Linda
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Old 07-13-2007, 03:47 PM #10
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Default Linda

We r working on regional support grroups.
Do u think this would work?
Hang tight and PM me if u have any suggestions
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