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


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Old 10-30-2012, 08:42 PM #1
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Unhappy 19, Just started my life... Now surgery in a couple months!!!

Wow, just started my life as a college student and my future seems so bright when i am finally told that i need cervical rib removal next semester.... i've had this problem all my life and gotten cat scans before and now when the pain is excrutiating is when they take another catscan and they know what i have. since then the extra ribs have grown and are now 5 inches long. now i lose feeling in my left arm all the time and my extra rib is trying to fuse with my clavicle because they are always touching! i cant drive with my left arms because that slight raising pinches the veins and nerves in between the clavicle and rib and does no good. its a constant struggle to even fall asleep and i need to get this removed because i might get blood clots or worse TOS or when im older and want to have a family and swell during pregnancy i wont have any use of my arm or even blood circulation into it. Good thing i only need one removed! although im thankful i know now and i am sure it happened this way for a reason. im glad i joined this blog sort of thing, reading posts make me more aware of things! I'm so glad that for a lot of you things have worked out and for those that haven't... let the lords strength give you the power to move forward! although i know some general things, i want to still ask basic questions if anyone is willing to help!!

- first off what MD performed the surgery on you? Nuero? vascular speacialist?

- how long is the recovery time after rib surgery?

- i might be having to travel out of city limits so will i have to wait to recover at the hospital before getting in a car for a 5 hour drive?

- one of my doctors is very calm about the procedure and always assures me im going to be okay, the other is always reminding me about my risks-- nerve damage, possible stroke during surgery, collapse of lung, muscle loss and no arm growth, scar tissue... has anyone here actually had any of those symptoms? it scares me very much!!

- what did you do after the surgery? did you wait a couple months before serious physical movement and go to a PT to help with the different movements?


Any feedback is welcome, this is so "alien" to me, especially since im so young thank you all for everything! HUGS

P.S. sorry for the words that dont start with capitals and should, instead it enters the code to design my text!!!
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Old 10-31-2012, 01:48 PM #2
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I'm glad you found this forum. You know that when you post a problem, several others will have been there and understand your pain, fear and frustration. Try not to expect the worst. I know that is difficult, especially when you are in so much pain, but try not to panic. Pain feeds off panic and vice versa.

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Old 10-31-2012, 02:14 PM #3
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Usually is a vascular or neuro, but an expert is the important thing.
Not a time for someone to be practicing/learning on you LOL.

DOCTORS & PTs List and saved PT info threads-
http://neurotalk.psychcentral.com/thread135.html

There have been others mentioned in posts that haven't gotten added to the listings. A forum search (link in my siggy) of the names you are thinking about in your area might be a fast way to find info.

Or post a location and other may know of good drs close.

Usually a few days stay in hospital is the norm.
Some that travel stay a few xtra days in a nearby hotel/motel until ready to travel home. lots of pillows/padding - smooth car/driver
you won't be able to drive yourself for awhile

dr & your body will tell you when PT /activities can start -everyone responds differently

recovery time varies so much due to individual, how much things were moved around during surgery, dr expertise and unknown factors.

roughly months to a year depending on whats stage you are asking about.
There is the actual surgery recovery time, and then a middle stage, and then a possible full recovery time of a year or so..
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Old 11-01-2012, 03:18 PM #4
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Dear Sam,
Thanks os much for your welcoming, I loved that you said pain feeds off panic, I am definitely keeping this in mind. You're right and I'm so grateful for everyone who can give me feedback !

Dear Jo*mar,

Thanks so much for your feedback and the answers to my questions! I actually just visited my first option for a surgeon today and he was knowledgable and so calm about the process. I'm needing one more MRI with injection in veins of "contrast" so they can see the anatomy in my body to see if there is any damage to the ,aim arteries or veins. He wants to make a plan before he does anything and he really assured me that he knew what he was doing. He thinks what causes my numbness or tingling of the arm is with pinching of one of the three scalenus muscles instead of a problem with a vein which is a good thing. After this MRI we'll be ale to know the approach to my surgery and I'll be able to post the exact procedure he's hoping to take for anyone reading this forum or this post! Thanks for all the support.




-nmorozco94
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Old 11-02-2012, 10:08 AM #5
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Quote:
Originally Posted by Nmorozco94 View Post
Wow, just started my life as a college student and my future seems so bright when i am finally told that i need cervical rib removal next semester.... i've had this problem all my life and gotten cat scans before and now when the pain is excrutiating is when they take another catscan and they know what i have. since then the extra ribs have grown and are now 5 inches long. now i lose feeling in my left arm all the time and my extra rib is trying to fuse with my clavicle because they are always touching! i cant drive with my left arms because that slight raising pinches the veins and nerves in between the clavicle and rib and does no good. its a constant struggle to even fall asleep and i need to get this removed because i might get blood clots or worse TOS or when im older and want to have a family and swell during pregnancy i wont have any use of my arm or even blood circulation into it. Good thing i only need one removed! although im thankful i know now and i am sure it happened this way for a reason. im glad i joined this blog sort of thing, reading posts make me more aware of things! I'm so glad that for a lot of you things have worked out and for those that haven't... let the lords strength give you the power to move forward! although i know some general things, i want to still ask basic questions if anyone is willing to help!!

- first off what MD performed the surgery on you? Nuero? vascular speacialist?

- how long is the recovery time after rib surgery?

- i might be having to travel out of city limits so will i have to wait to recover at the hospital before getting in a car for a 5 hour drive?

- one of my doctors is very calm about the procedure and always assures me im going to be okay, the other is always reminding me about my risks-- nerve damage, possible stroke during surgery, collapse of lung, muscle loss and no arm growth, scar tissue... has anyone here actually had any of those symptoms? it scares me very much!!

- what did you do after the surgery? did you wait a couple months before serious physical movement and go to a PT to help with the different movements?


Any feedback is welcome, this is so "alien" to me, especially since im so young thank you all for everything! HUGS

P.S. sorry for the words that dont start with capitals and should, instead it enters the code to design my text!!!
I just had the surgery you are talking about. It is difficult but from reading your post I believe you have an excellent chance to get well and have the life you seek. I fully understand what you say about fear as it has become my worst enemy. I pray that your faith will be stronger than your fears. He will see you through this.

I cannot emphasize enough what another said about getting to one of the experienced doctors even if you have to travel. I went half way across the country but made it home yesterday three days after surgery.

I just started a thread seeking post op advice as I am on this journey too. You will get through this and you will be stronger for it.
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Old 11-02-2012, 04:03 PM #6
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Quote:
Originally Posted by romans8 View Post
I just had the surgery you are talking about. It is difficult but from reading your post I believe you have an excellent chance to get well and have the life you seek. I fully understand what you say about fear as it has become my worst enemy. I pray that your faith will be stronger than your fears. He will see you through this.

I cannot emphasize enough what another said about getting to one of the experienced doctors even if you have to travel. I went half way across the country but made it home yesterday three days after surgery.

I just started a thread seeking post op advice as I am on this journey too. You will get through this and you will be stronger for it.
Thank you so much romans8, for assuring me of a bright and better life post surgery. I truly appreciate it, and it brings me great joy to hear that you have found a specialist that you feel comfortable with and have made it home! Just like you've promised me, even though I don't know your circumstances I am sure that you have so much more of your life to enjoy comfortably now that you've had the surgery!!! God will watch over you like he does all of us. Thanks for your advice and I hope your recovery process is fast and great, ill make sure to visit your thread to read about journey and see what advice ppl have for you. I, sure ill benefit from it too. All the best!!!

-nmorozco94
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