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

Help! Multiple TOS surgeries!

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Unread 02-23-2013, 09:26 AM   #1
zoey07
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Confused Help! Multiple TOS surgeries!

I am 21 years old.... I played softball my entire life and was diagnosed with neurogenic thoracic outlet syndrome in 2008. In January 2009 I had my first rib removed, my scalene muscles removed, and my pec minor released... then continued my softball career. In the same right arm I was still having nerve pain and in August of 2010 I had ulnar nerve transposition surgery and again, continued my softball career. (Doctors orders said it would be okay to) Soon after however... I had to stop and receive a second neurogenic TOS surgery in October of 2011 where they reopened one of the incisions and removed scar tissue. Needless to say, I was done doing any sort of strenuous activity. I've done all the physical therapy and have taken medication and it is still difficult coping with the nerve pain.... but that is not what brings me here. In the same arm, my hand is now turning purple off and on throughout the day and freezing to the touch. My arm also has slight swelling in the shower and turns blue. I realize these are signs of Venous TOS and I have a doctors appointment next week with someone different than who performed my TOS surgeries. I just need some advice or help... anything works. I am one who deals with pain well and doesn't complain about a lot... but I cannot live like this!
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Unread 02-23-2013, 12:35 PM   #2
Jo*mar
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Hi Zoey,
Some people just tend develop a lot of extra scar tissue, you might be one of those.
I wish they would have suggested that you not continue with the ball playing...

I wish my drs would have stressed how my multiple RSIs could become a chronic issue like TOS , but none mentioned anything like that.
1 dr did say I should not continue doing repetitive work , but the WC took him off my case at that point..

But I might have listened if many of them had said the same thing.

But it is hard to give up things we love doing..

I don't know if the sx you are having now are scar tissue related or not.
have you been doing any PT or self care gentle stretching?

Look up Sharon Butler's website - www.selfcare4rsi.com

for her thoughts on how do very gently stretch damaged tissues - explore the whole site & articles.
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Unread 02-23-2013, 01:06 PM   #3
zoey07
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Quote:
Originally Posted by Jo*mar View Post
Hi Zoey,
Some people just tend develop a lot of extra scar tissue, you might be one of those.
I wish they would have suggested that you not continue with the ball playing...

I wish my drs would have stressed how my multiple RSIs could become a chronic issue like TOS , but none mentioned anything like that.
1 dr did say I should not continue doing repetitive work , but the WC took him off my case at that point..

But I might have listened if many of them had said the same thing.

But it is hard to give up things we love doing..

I don't know if the sx you are having now are scar tissue related or not.
have you been doing any PT or self care gentle stretching?


Thank you for the feedback. Yes, I do wish I would've stopped playing years ago... but I didn't want regrets later on for not trying I guess. Stubborn and young I am just nervous that the scar tissue is forming around my vein. I don't want to have anymore surgeries... (not that anyone does haha) but yes I have done a lot of physical therapy for the issue which is why I am just exhausted and frustrated now. Thanks again for the reply and the site!
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Unread 02-23-2013, 03:27 PM   #4
chloecasey
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Originally Posted by zoey07 View Post
I am 21 years old.... I played softball my entire life and was diagnosed with neurogenic thoracic outlet syndrome in 2008. In January 2009 I had my first rib removed, my scalene muscles removed, and my pec minor released... then continued my softball career. In the same right arm I was still having nerve pain and in August of 2010 I had ulnar nerve transposition surgery and again, continued my softball career. (Doctors orders said it would be okay to) Soon after however... I had to stop and receive a second neurogenic TOS surgery in October of 2011 where they reopened one of the incisions and removed scar tissue. Needless to say, I was done doing any sort of strenuous activity. I've done all the physical therapy and have taken medication and it is still difficult coping with the nerve pain.... but that is not what brings me here. In the same arm, my hand is now turning purple off and on throughout the day and freezing to the touch. My arm also has slight swelling in the shower and turns blue. I realize these are signs of Venous TOS and I have a doctors appointment next week with someone different than who performed my TOS surgeries. I just need some advice or help... anything works. I am one who deals with pain well and doesn't complain about a lot... but I cannot live like this!
Hi Zoey

I am curious to know who did your surgery & who you are seeing next.

I am just 2 years postop with 2 extra surgeries due to lymph leaks...in hospital almost a month....have not had any visible? signs of vascular symptoms though I have been having what I believe is "nerve pain" especially comes on when I lay down at night & dependent on the previous days activities can be sooo uncomfortable and results in the next day feeling miserable!! Have you had any shortness of breath issues or alot of toghtness or strange sensations at or around the surgical site? My surgery was on left side and I am having bad numb & strange feeling, jaw & up that side of my face....have you had this symptom?

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Unread 02-23-2013, 08:51 PM   #5
zoey07
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Yes, I have had a lot of shortness of breath and have barely slept due to nerve pain. My surgery was done at Barnes-Jewish hospital by Dr. Thompson. He is supposed to be one of the best in the country.
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Unread 02-23-2013, 10:29 PM   #6
chloecasey
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Originally Posted by zoey07 View Post
Yes, I have had a lot of shortness of breath and have barely slept due to nerve pain. My surgery was done at Barnes-Jewish hospital by Dr. Thompson. He is supposed to be one of the best in the country.
Hi Zoey

Thanks for your response..mine was the same & look forward to what answers you will get from the new doctor.

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Unread 02-28-2013, 06:59 PM   #7
chloecasey
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Originally Posted by zoey07 View Post
Yes, I have had a lot of shortness of breath and have barely slept due to nerve pain. My surgery was done at Barnes-Jewish hospital by Dr. Thompson. He is supposed to be one of the best in the country.
Hi Zoey

Just wanted to touch base about you seeing new doctor & very interested what answers you may have gotten about your issues. What part of Illinois are you from, I am in Northern Illinois, just wondering?

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Unread 03-19-2013, 07:23 PM   #8
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Zoey, so sorry you are going through this. I'm 22 and a flutist who had the first rib resection and anterior scalene removed, with a potential pec minor release looming ahead and ulnar nerve release/transposition for nerve pain. I had my surgery 7 months ago and am not playing yet due to nerve pain. (My surgeon thought it makes sense to address the pec minor compression before the elbow, in case the elbow is then not necessary.) My surgery is scheduled for April.

What was your experience after the pec minor release? Did it affect your ability to throw or use that arm?
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