Help w/ Pain 9 Months after 1st Rib Resection

annhere · 01-13-2011, 03:34 PM

Hello TOS Family,

It's been a long time since I've posted. And this month, I'm now 1 year since my TOS surgery....and lets just say the road traveled and has been a lot harder than I hoped for. Just yesterday I had another MRA/MRV/MRI to see how/why I'm still in so much pain, why I still suffer from so many headaches and is my left side going to be spared.

My life still remains the same....Limit myself on all activities and some not at all

kellysf · 01-15-2011, 02:43 PM

Ann,

I'm very to sorry you're not feeling better after surgery. We're both in the Bay Area and I think we had the same surgeon. My surgeon sort of gave up on me once I didn't have the hoped for response to surgery. When I asked him what he had learned from the surgeries he'd done since he did mine, he said, "To pick my patients more carefully." I said, "Do you mean that I shouldn't have had surgery in the first place?" He didn't answer.

I think the doctors could learn a great deal from those of us who had "failed" procedures. Unfortunately, there doesn't seem to be long term follow up. We mess up their desired surgery result statistics. Too often it seems the surgery failures are pawned off on the patients.

Before I had surgery, my doctor referred to me in medical reports as a "very motivated patient." I'd be interested to see how he explains my outcome, and others like me, now.

I hope things get better going forward.

Take care,
Kelly

kellysf · 01-15-2011, 02:51 PM

Ann,

I'm very to sorry you're not feeling better after surgery. We're both in the Bay Area and I think we had the same surgeon. My surgeon sort of gave up on me once I didn't have the hoped for response to surgery. When I asked him what he had learned from the surgeries he'd done since he did mine, he said, "To pick my patients more carefully." I said, "Do you mean that I shouldn't have had surgery in the first place?" He didn't answer.

I think the doctors could learn a great deal from those of us who had "failed" procedures. Unfortunately, there doesn't seem to be long term follow up. We mess up their desired surgery result statistics. Too often it seems the surgery failures are pawned off on the patients.

Before I had surgery, my doctor referred to me in medical reports as a "very motivated patient." I'd be interested to see how he explains my outcome, and others like me, now.

I hope things get better going forward.

Take care,
Kelly

jamiek · 03-02-2012, 04:30 PM

Thank you to everyone who posted here. The information is very helpful although I'm sad to see others suffering with this.

In 2008 a surgeon incorrectly diagnosed a blood clot in my chest and arm as TOS and did a 1st rib resection and scaleneotomy. It turned out I had lupus and continued to clot in other areas of my body after the surgery. I have suffered with horrible pain and skin burning in my shoulder, neck and arm ever since the surgery. I am treated with opiates which make the pain bearable.

Lately the pain in my shoulder blade is unbearable, like it's pulling apart. I found the information on posture very helpful and will try what others have suggested. I just found a new chiropractor who tried cold laser and ice on my neck and shoulder in my first treatment - not sure it helped much but I'm going to go back.

Thanks again to everyone for the help. I feel like I'm losing myself to this pain.

Mjg13 · 03-05-2012, 01:04 PM

Not that I wish it on anyone, but I never recovered from my rib resection and was diagnosed with crps as a result of surgery. Upper right extremely breast, arm, hand, shoulder, shoulder blade, neck and right side of face and head. You may want to research because early diagnosis is imperative. Again, I pray that's not it. Best wishes! Btw ice is a huge no no with crps.

ExNx · 10-20-2015, 01:08 AM

Hi Julia,

I wondering how you're doing now? I have a very similar situation as you described. I'm 9 months post op from a rib resection in Boston (maybe the same renowned surgeon at MGH as you), 2 months post op pec minor release too. I am getting recurring symptoms though

It's worse when on computer as well.

Just curious, it's been awhile for you, any improvement now? Hopefully you're all done with your PhD.

I'd love to hear from you. Thanks!

Eric

Quote:

Originally Posted by jbird

Hi everyone!

My name is Julia and I was diagnosed with vascular thoracic outlet syndrome 18 months ago after getting a blood clot in my right arm out of the blue and had a 1st rib resection and scalenectomy shortly after diagnosis. I felt lucky to find a good surgeon who had experience performing this surgery and thought my life would go back to normal.

Things changed 9 months ago when I started getting terrible shoulder, neck and upper back pain as well as pain in my fingers and arms when using the computer. I've seen different doctors but am still in pain and am afraid I'm always going to feel this way. Has anyone else experienced problems like this many months after surgery?

My pain is most acute right over the surgical site on the muscles they cut through to do the rib resection (my surgery was above and below my collarbone). Does anyone have any recommendations on what I should do? I've starting to feel very desperate and depressed and am afraid I'm always going to be in this much pain or worse.

For my work and now as a PhD student I use the computer all the time and am starting to think that perhaps my TOS is related to a repetitive stress disorder. This scares me even more since the computer is so important to my work. I've tried physical and occupational therapy and am currently seeing an osteopath who has me on muscle relaxers which helped a little bit. I've also been trying acupuncture and gentle yoga but the pain is still there. I'm willing to make major changes to my lifestyle and have already started working in a more ergonomic way and am trying to limit my computer use, but I still find that my pain is staying the same or even getting worse. Has anyone with these symptoms who uses the computer for their job found a sustainable way to keep working?

Thank you so much to anyone who can offer any advice or help or a similar story to know I'm not alone!

Julia

toslady · 11-03-2015, 07:24 AM

Quote:

Originally Posted by ExNx

Hi Julia,

I wondering how you're doing now? I have a very similar situation as you described. I'm 9 months post op from a rib resection in Boston (maybe the same renowned surgeon at MGH as you), 2 months post op pec minor release too. I am getting recurring symptoms though

It's worse when on computer as well.

Just curious, it's been awhile for you, any improvement now? Hopefully you're all done with your PhD.

I'd love to hear from you. Thanks!

Eric

Eric,

According to the Neurotalk statistics, jbird has not visited this site since Dec. 29, 2010 and is not likely to receive your inquiry. Before she left this website, she did allow the email option of contacting her. If she has not changed her email, you may have some success if you use that option. I have had some success in contacting "AWOL" members using that option.

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