Thoracic Outlet Syndrome

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I’ve been diagnosed with TOC just a week ago. My left arm goes numb, my right arm goes numb. Sometimes they’re cold and sometimes they change color. My dr said when my arms are lifted I have no pulse and when they’re lowered it comes back. When I had the tests done one position had only a 3mm reading on the graph. I don’t have time to go through the physical therapy I only have 12 weeks of paid FMLA, what are the chances I’ll need this surgery in your opinion, how long is the recovery?

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  • Posted

    Hi Melissa, 

    It sounds like your TOS might be vascular/arterial - in which case you might be at the risk of developing blood clots. 

    I've been diagnosed with vTOS back in 2013 after I got a clot in my right arm. I don't think that physical therapy could help much with the vascular compression, but it might help with the pain you are feeling - as it indicates the nerves being pinched.

    I've been given three choices: 

    1. Do the surgery - rib removal. 

    2. Don't do the surgery and see what happens.

    3. Don't do the surgery and take blood thinners to prevent clotting. 

    I went for the third and have been taking blood thinners for the last 4-5 years. I would be at significant risk of reclotting if I stop taking them. There are some risks associated with taking blood thinners, but at the moment (as I don't have pain, just vascular compression), I am fine with taking them and not doing the surgery. 

    I might end up doing surgery down the road, but my hematologist/vascular surgeon is fine with me taking blood thinners and not doing the surgery for time being as I am in my early 30s and don't feel any pain. 

    Feel free to as more. smile

    My advice would be to figure out what exact type of TOS you have: neural, vascular or arterial. 

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    • Posted

      I’m pretty sure I’ll be seeing a surgery in the near future because I have to see a vascular surgeon on the 9th. I’m just worried about my future in the sense of how long recovery takes and if my job will still be secure thereafter. I’m nervous about the blood thinners because of my heart palpitations and other issues like the electrical wave feelings I get in my heart. It’s almost as if it’s been sleeping and then wakes up out of no where. I’m not sure if they’re all related, I guess I’m just scared. Could be worrying myself sick too I suppose. I just wish my arm would stop throbbing at least until something is figured out. Your info was very helpful though. Gives me some questions to go into the appointment with the surgeon asking.
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  • Posted

    Hi memissa. Sounds like you do. Make sure of your consultant first check up on him. They don't usually do both together. Mine was two months apart.

    Cannot say your recovery time everyone different. And ask about nerve damage.

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  • Posted

    Girl, 

    You are ME! Get the surgery!!! I had surgery on my left cervical rib about a year ago. I was back in class 3 days later. This surgery has been LIFE ALTERING for me. Things typically get worse before getting better. I was doing PT but my Vascular surgeon stated that obvious... "It's a STRUCTURAL problem so NO amount of PT will make that go away." I take Lyrica 200mg 3 times daily still which helps with nerve pain. I think I went too long with this issue, plus it took FOREVER for my diagnosis. For this reason I believe I have the nerve damage I have today. That is not to say it wont get better. He also told me that after surgery, use your fingers to "spider crawl" up the wall. This was the BEST advice to help with my range of motion. I would say THAT took the longest to gain back, along with strength. I'm still weaker in that arm. It was cool that I could watch my progress. Bottom line, you wont be able to raise your hand/arm even shoulder level (which is why that exercise was miraculous!). I had my mom move ALL my dishes, etc to lower levels to help with this. I suggest you do the same. 

    Now, I really don't have the pain I used to. It was INCREDIBLE, INDESCRIBABLE!!! I do have numbness sometimes but that's usually from sleeping weird. smile I have had NUMEROUS days where I forget I even had a problem... ALL FIXED! This is why I'm so happy for the results of surgery. Just having relief is wonderful! I drop things on occasion thinking my hand can handle it. lmao, no pun intended.

    I've heard that it hasn't worked for some people. Some people take longer recovery. I was glad I did the PT because it gave me strength prior to surgery. It's SUPER important to take your recovery seriously. I don't think people truly understand how major this surgery is. Definitely, get the best surgeon with many (successful) procedures under his/her belt.

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  • Posted

    In regards to the surgery for TOS. My husband was diagnosed with TOS in Oct 2016 on both sides, in Feb 2017 he had his pectoral minor released on the right side. He had great relief from this but not complete relief. We researched and researched and found the only facility in Houston that specialized with TOS. We had his surgery scheduled for May to remove his first rib.

    Whatever you do…do NOT let I truly mean this from the bottom of my heart, DO NOT let a doctor do this surgery laparoscopic no matter how much they think they can do it. Hindsight is always 20/20! The research does not support this surgery to be done laparoscopic the risk of injury is much greater and can ruin your life.

    My husband had the surgery laparoscopic as per the surgeon. He now has lost the function of his right lung (phrenic nerve injury) and developed CRPS (which is a horror story).  He cannot have the left side fixed as he would not be able to go under anesthesia and in the event the left phrenic nerve is ruined he would spend his life in an iron lung.

    Ask your doctor how many surgeries he has performed open? Get a real number not around 100. Around 100 in a lifetime? A year?

    The recovery is intense and this is from an outsider looking in and watching my husband try to recover.

    I hope you have a fast recovery and have no complications. Do all the research you can before going under the knife. Ask all the questions. Has the doctor ever had a phrenic nerve injury? Brachial plexus injury is more common but should NOT be the norm. Be an educated patient and demand full accurate answers.  

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    • Posted

      WOW! I've never heard of laparoscopic surgery for this... and I'm GLAD! Thanks for sharing. I may need to get my other side done and I fear my surgeon is close to retirement. 

      I'm TRULY sorry for what you and your husband has been through, and continues to go through. These thing effect family and loved ones as much as it does the patient (I believe) sometimes even more! Thank you for being THAT person by his side. We ALL need someone like you to make it through. I also have psoriatic arthritis so God only knows I've put my family/friends through the wringer!

      All the BEST to you and him!!! I hope things get better! 

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