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


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Old 03-20-2008, 01:28 AM #1
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Default I need help PLEASE

Dear friends, I have not been on in awhile do to some problems I've been having I've seen one post that may help about not being able to breath right and why my voice sounds so raspy and I struggle to breath short winded. Problem #2 is this I hope there is help! I have no heart problems in my family none what soever ever since my operation for TOS and my symphatic nerve cut for RSD my legs have been off and on swollen as of late they have been severely swollen and in pain even to the touch my feet are off color (purple) and cannot fit in my shoes or compression socks I'm so swollen. My question is this can this operation cause heart problems I'm highly worried as I said no heart problem in my family history whatsoever! Now I hear I could have congestive heart failure going on not what I want to hear. I have or am in hell with work comp have no Ins. since I'm in work comp hell and they don't see how it could be part of my injury. I say this I was healthy no problems before injury no heart problems in family now my breathing is bad and my heart may be going I see my family doc Friday who will work on payments to help me . Has any of you had this problem? I have TOS and as you also know RSD in upper body please HELP! I'm sorry I have not been here in awhile but this is why, I'm scared really scared I need help....... so this is my SOS.. Thanks

Last edited by flippnout; 03-20-2008 at 05:35 AM. Reason: mis spelled
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Old 03-20-2008, 06:37 AM #2
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Oh Flippin, this is not good news to hear. I was so hoping you were on the mend. I don't have many answers about the heart - I am waiting on info about heart things to come from my psych therapist. I don't have any cut nerves, but I am having chest pain short of breath, dizzy, etc and my GP refuses to acknowledge my symptoms!! since my BP always looks to be ok - she stops there. But we TOSsers know that BP can be very flakey and unreliable for us. I'm hoping it's irritated nerves causing my chest muscles to clamp down.

Has your Dr put you on any heart meds? Has he/she asked you to relax and be in a home situation that is as stress-free as possible (given the circumstances)?

Maybe with the new heart dx, they can push your w/c SSD case along the fast-track? I'd ask about that. maybe your Dr can put in a good word for you. If nothing else, your file will show where you are needing help asap.

I wish I could be of more help to you - I'll bet Lisa-L will have some great input for you. I'll be keeping you in my prayers.


Anne

ps: stop wearing a bra...
and re the leg swelling, do you take any 'statins' for high colesterol? if so, stop them and ask Dr about the swelling.
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Old 03-20-2008, 12:13 PM #3
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[Now I hear I could have congestive heart failure going on ]

Who suggested the above? Is there tests pointing to it?
Or did someone just mention it as a"maybe"?
I think congestive heart failure should show up on tests pretty clearly- at least you would know if it was that or not.

I know you said you have no private ins, you can't get on your spouse's plan?

I would find a way to get tested to find out for sure and then worry about the cause/bills later.
Did you look up the symptoms for congestive heart failure to see if many apply?
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Old 03-21-2008, 05:15 AM #4
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Hi Flip............I'm sorry things are so tough for you right now.

How did this possible dx get mentioned ? Did someone say that your symptoms could be CHF ? Or was it made by someone who did a physical exam on you ? It's not something that they have to do a huge amount of tests to determine. If you are in acute crisis (extremely short of breath ) they might order a chest xray, but normally a doc can tell just by listening to your lungs, checking your pulse, and looking for swelling at your ankles.

Do you mind me asking how old you are ? Usually people with CHF are 60 + Younger people with it usually have other very serious health issues....like cardiac abnormalities, kidney failure, etc.

For those that don't know, congestive heart failure is a weakening of the heart (which is a muscle). It just can't pump as well as it used to. It can be caused just from older age (all things are relative ) or it can be a complication from high blood pressure/kidney failure/etc. CHF means your heart tries to bear quickly, but doesn't compress with the strenth that it should to circulate blood all around your body. CHF'ers frequently have swollen ankles....the blood gets down there, but runs out of steam for the return trip to the heart. It dumps off some water into the cells in your feet to lighten it's load. You can get short of breath with exercise because your heart has difficulty with the extra work load to get more oxygen. When it's really bad, the fluid also backs up in your lungs....which obviously makes you extremely short of breath because it's harder for the lungs to get oxygen because the extra fluid/water is in the way. With a stethoscope, you can hear fine crackling noises (different than an asthmatic wheeze or a pneumonia rattle)

Not to downplay the signifigance this possible diagnosis )we all need another thing wrong with us like we need a hule in the head ), but most people with CHF live many many years....only they have to take a few meds. I'd equate it to diabetes or high blood pressure. Yes, there 35 year old men who drop dead from a heart attack, but the majority of people with the high blood pressure/high cholesterol combo take meds and live for decades.

The good news is.....the usual meds are cheap because they are generic/have been around forever. Digoxin slows the heart down and helps it compress more strongly. Lasix is a fluid pill to help get rid of the excess water.

The bad news is all of the complications that can develop....the diuretics can make your kidneys shut down, the dig can make your pulse too slow, some people need oxygen, etc

Sooo.....I really hope that you don't have CHF. but if you do end up being diagnosed with it, we'll all be praying that you will take your meds, watch your sodium intake, and have a long, long life.

As difficult as it must be, please try not to worry too much about it until you know for sure. It's in God's hands now. I'm sure the extra stress has your neck/back muscles in knots right now.........and we all know what that does to TOS.

God bless Flip
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Old 03-21-2008, 08:13 AM #5
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My TOS doc feels it could be this or something dealing with my heart. I have had doppler done nothing there as he thought it may be blood clot.

I have since these operations have had problems with the swelling in my legs and feet. Right now they are bad and have not gone down, I have never had problems with my heart nor does any heart problems run in my families I know both sides of my family are freakish as we tend to live a long life (great grandmother was 105 when she passed).

I have no IC but have a wonderful family doc who I will see under payment plan to help me see if there is a connection! All I can say is this healthy before all this stuff and now my breathing and heart, I feel no strain in my heart I have my BP checked with PT when I see them and some times high some times normal depends on pain that day I try to walk but hurts with RSD and TOS but I try.

Could it be scar tissue pushing on a vein? restricting blood flow? I know this is all tied in I'm sick of IC saying well how can it be with injury whe I have no heart probs before injury or breathing. I will keep you informed on what is going on!

I do not blame my doc for any of this he is the BEST without him saving me I would be in a world of blackness. I think it is something with scar tissue mabey restricting my veins....What do you all think?

Thanks
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Old 03-26-2008, 01:40 AM #6
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An elderly relative developed CHF immediately after surgery for a bowel obstruction. All of the IV fluid given during and after the surgery was what did it (fluid overload) I wonder if your story is something similar.....if swelling issues started right after your surgery
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