Thoracic Outlet Syndrome

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Thoracic Outlet Syndrome
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    Community Voices
    Community Voices

    Newly diagnosed


    Hey everyone! i was recently diagnosed with venous thoracic outlet syndrome after struggling with a horrible DVT that has not gone away as well as constant nerve pain, numbess in my face, arm, and hand, and swelling. It has been so scary for me. I will most likely have to get surgery because it is so bad. I also have ehlers danlos syndrome and all of the comorbidities that come with it. I was wondering, for anyone who has both, is it possible that this puts you at risk for more vascular compression disorders? I have so many unexplained health issues and I have been researching other vascular compression disorders and I am really wondering if this is something I should bring up to my vascular doctor (things like MALS and SMAS). What are your thoughts? Do you have more than one? #EhlersDanlosSyndrome #EhlersDanlosSociety #MedianArcuateLigamentSyndrome #smas #MALS #vasculardisorders

    Community Voices

    I no longer feel safe on social media

    I am getting to the point where the longer I am on social media apps like instagram, facebook, and tik tok especially, the more unsafe I feel. Every single day I am harassed in the comments. I constantly see my fellow disabled peers, friends, and loved ones being harassed by people too. I have seen people post threats, I have seen subreddit accounts dedicated to accusing disabled people of faking their illnessess. I have seen people's mental health, physical health, and safety in danger because of this, whether a danger to themselves or others. Honestly, this is one of the only online spaces I feel safe. I should not have to hide my experience being disabled, I should be allowed to raise awareness and be honest, but I do not feel safe. I have noticed that the more followers I get (and I am not even like instagram or tik tok famous AT ALL), the more hate I get. I get hate by doctors, I have medical trauma, I get hate by strangers in public, I do not need to get to the point where I do not feel safe online either. Being disabled is so scary, I am scared of my own body and those around me. There is a reason why we are so lonely and isolated beyond just being housebound or sick, it is because so many of us do not feel safe. I have developed agoraphobia because of this. It's unacceptable. And i know i know people will say "do not let it get to you" but it wears on you!!! It builds up and it won't stop!! Don't let it get to me? Do not let people do this! Why is it our responsibility to not let this violence and harassment get to us when it should be their responsibility to unlearn their horrific and abhorrent amount of ableism? Why is the blame always twisted onto us? I am done. I am fed up. I cannot stop my disabilities, and the sicker I get, the more I cannot hide it and the less my illnesses become invisible. Invisible or not, it is unconscionable to be treated this way to the point where I literally fear leaving the house or going online. I've had it.#EhlersDanlos #POTS #ThoracicOutletSyndrome #Ableism #ChronicIllness #InvisibleIllness #visibleillness #Neuropathy

    17 people are talking about this
    Community Voices

    Anyone out there also suffering from TOS? If so. Looking for some pain relief advise. ☹️

    2 people are talking about this
    Community Voices

    I spent eight days trying to seek psychiatric help

    Part 1 of 2 Today I feel raw. Today all feels heavy. Today I cannot see light. These are the days between the good ones found in living with rare chronic disorders and the #MentalHealth associated with such diagnoses.

    When I was 35, my life was literally flipped on its side as I was thrown out to sea with no sign of rescue. I was diagnosed with the rare, chronic #MalDeDebarquementSyndrome . When I was 39, I was diagnosed with the rare, chronic #ThoracicOutletSyndrome .

    When talking about my disorders, I often talk about my symptoms: feeling as if I’m constantly in motion, nausea, brain fog, migraines, chronic pain, change of gait, and numbness and tingling down my arms into my hands. But I rarely talk about the #MentalHealth aspect of living with two chronic incurable diseases.

    I was diagnosed with #Anxiety and #Depression when I was 19 years old. It’s no surprise that my #Anxiety and #Depression have increased as my diagnoses rolled in. It’s no surprise that I mourn the person I once was before my diagnoses. It’s no surprise that some days my chronic pain and chronic #MentalHealth are too much to carry.

    This all came to a head three weeks ago when the world became too dark. When the weight of my disorders became too much to bear. I could no longer see my worth on this earth. I imagined the life my children would lead without me as a burden dragging them away from their lives. I imagined the relief my husband would feel not having to deal with me. I saw myself as a burden, I felt the pain of my illnesses and the truth of what it must be like to live with someone who always “doesn’t feel well.” I imagined my family would be better off without me. And I held a kitchen knife in my hands contemplating ending my life.

    After several minutes standing there, holding the knife in my hand, touching the blade to the blue vein in my wrist, I dropped it in the sink and ran upstairs. I fell to my knees before my husband and said “I need help.”

    I was admitted to an emergency room and stripped of my belongings and my self worth. I was required to wear a prison-like uniform that was green rather than orange but still maintained the identifier that this person was a risk to themselves or others.

    I was in the emergency room, so I witnessed #COVID19 patients being transferred to ICU. I witnessed a gun shot victim being escorted by police to the room next to ours. I witnessed a male so drunk, his hospital gown was on backwards exposing himself to the world. Food was brought to me at the end of my bed. Occasionally, a nurse would stop in to give me medication. I forgot things. I forgot who I was at times. I forgot where I was. I was medicated and confused. But I was not treated; I was monitored for three days.

    I hadn’t slept in three days. I hadn’t showered without someone watching me for three days. I had been alone with my thoughts. I had a young man babysitting me all hours and yet there were no hospital beds available to move me from the emergency room to the psychiatric ward.

    On that third day, I called my husband. I begged him to come get me and help me find a #MentalHealth retreat. Where I could work on myself, have counseling sessions, talk to others, and not feel like a prisoner.

    My husband saved my life that day. He picked me up, brought me home long enough to shower in my own shower, then dropped me at a new behavioral unit with open beds across town. I checked myself in. I told my story, and the social worker said I would be ok. The heaviness would not always feel this heavy and the darkness would not always feel these dark.

    I spent five days in the behavioral unit. We played cards, did yoga, played chess, shot hoops, ate a lot, slept a little, played backgammon, colored pictures saying “you are awesome,” rode stationary bikes and spent about 12 total minutes with a psychiatrist and social worker in those five days.

    This is #MentalHealth . This is the state of #MentalHealth in our country. You either remain a prisoner at the local emergency room or you retreat to a behavioral unit where the techs are more worried about the number of plastic spoons that were handed out during meals than they are that a patient cannot see her way out. I would beg to see the light of day and one kind tech would open a door to the courtyard and let the sun shine down on me in -5 degree weath

    17 people are talking about this
    Community Voices


    So I've been thinking about going back to
    therapy, just to have someone to talk to
    who could help me sort through everything
    I'm going through, help with some issues I
    have. But omg it's so expensive. Most
    counselors in my area don't accept
    insurance and are charging over $75/
    session. With all of my medical bills and
    regular bills, I can't afford that. Then these
    online sites are a minimum of $250/mo,
    which I can't do either.
    The last time I saw a counselor, it was like
    $35/session and that was in California!
    I don't understand why therapy is SO
    EXPENSIVE. I'm struggling, but can't seek
    the help I'd like because I can't afford it. It's
    ridiculous. #CheckInWithMe #Anxiety #Depression #ThoracicOutletSyndrome #Gastroparesis #PosturalOrthostaticTachycardiaSyndrome #ChronicPain #struggling

    9 people are talking about this
    Community Voices

    Surgery has been scheduled! I’m nervous.

    So my orthopedic surgeon put in a referral for me to go down to Dallas and see a vascular surgeon for possible #ThoracicOutletSyndrome . This doctor in Dallas was fantastic. Since he knew I was from out of state he fit me in for a diagnostic nerve block that day. He told me that if the nerve block worked that would mean that I am a good candidate for surgery. Well, it worked, but it only lasted for about 24 hours. About six days later, I got a call from the doctors office and the nurse told me that the doctor wanted to go ahead and schedule me for surgery. I was able to get it booked for February 23rd. However after working the following weekend at my part-time job, I was in so much pain and discomfort that I called the office this last Monday and got my surgery moved up to the 10th.
    So, I’m headed down to Dallas this coming Wednesday. I have to be at the hospital at 5:30 AM Thursday morning. I’ll admit I’m kinda terrified. This is the biggest surgery I’ve ever had to have. They will be removing my first rib and the anterior scalene muscle. I will be in the hospital for two nights, so I should be home Saturday afternoon.
    If anybody has had this surgery, please let me know how it went for you and how you’re doing now.

    4 people are talking about this
    Lindsay Gilbert

    When Thoracic Outlet Surgery Doesn't Relieve Your Symptoms

    Last year, I was diagnosed with neurogenic thoracic outlet syndrome, a disorder that causes compression of the arteries and nerves between the first rib and clavicle. My symptoms presented as numbness and tingling down my arms and into my hands, pain in my neck and shoulders and across my upper back, and dizziness and loss of balance/passing out when I lifted my arms above my head, causing compression. The good news compared to my other rare diagnoses was there was a potential cure: surgery. The surgery seemed fairly straightforward. The doctor would remove the first rib on each side and the compression would be relieved. The surgery was actually much more complicated. The surgeon would make two incisions, one under my clavicle to remove the top rib, clean up the trap muscles, remove muscles that were damaged, and clean out damaged nerves. He would then make an incision down my shoulder, remove my pec muscle, stretch it out, then reattach it. Yikes, right? According to the National Center for Biotechnology Information, in the article “Long-Term Functional Outcome of Surgical Treatment for Thoracic Outlet Syndrome,” 90 percent of surgical patients received some relief from this surgery. After a one-week stay in the hospital and three months of no feeling in my shoulder down my arm, I felt no relief. In fact, the pain across my rib cage and shoulders was intense, preventing sleep. The numbness in my hands was now constant and the pain in my wrists was almost intolerable. But as a chronic pain patient, I had seen this before and was not about to let it stop me. Now 10 months post-surgery, I continue to experience numbness and pain across my shoulders, down my arms, and into my hands. My hand dexterity is deteriorating as my ability to open containers (thank goodness I have a strong 12-year-old when my husband is traveling) and hold objects (I’ve been moved to plastic bowls and cups along with the kids) is becoming more difficult. I’m seeing a pain management doctor to try lidocaine injections to relieve the pain and hopefully relax the muscles. I’ve also received steroid injections in the cartilage surrounding my rib cage to relieve the inflammation and pain. As a chronic rare disease patient, I’m used to trying different medications, trying different methods to relieve the pain, trying different research studies to relieve the symptoms. I’m used to trying to find hope when everything we are trying isn’t working. This was different. The physical scars across my clavicle and shoulder are a constant reminder of the surgery that wasn’t successful. The chronic pain in my rib cage and across my clavicle, shoulders, and back is a constant reminder of the surgery that wasn’t successful. In the past, I’ve had to search photos or see the pill bottle to be reminded of the trial and error. Now, I look at myself and must face this truth, that I put my hope into a surgery that did not relieve the symptoms. I was not prepared for this surgery to not work. I did not have the emotional support in place to help me navigate this surgery that did not work. I’m still trying to find the strength to look in the mirror and not see my body as a failure but as a work in progress. I may not have been prepared for this outcome, but I will not lose hope that there is a plan for my pain, for my deterioration, or for the new challenges I will face in this life.

    Community Voices

    What CAN you do today?

    <p>What CAN you do today?</p>
    2 people are talking about this
    Community Voices

    Burned out, depressed, and feeling like a failure

    This is the worst, mentally, that I’ve felt in quite some time. I’ve been working seven days a week for the last five months, working my full time job M-F, and my part-time job on the weekends. I had to take on the second job, because my full time job just doesn’t pay enough (which I find hilarious since it’s a government contractor through which I have a security clearance). I have #PosturalOrthostaticTachycardiaSyndrome , #Gastroparesis , #EhlersDanlosSyndrome , and am seeing a specialist next month for #ThoracicOutletSyndrome . I’m exhausted. Physically, mentally, and emotionally.

    I found out this evening that a coworker and friend received a contingent job offer from an amazing federal agency. I’m honestly happy for him. I really am. But I feel like a horrible person because I’m jealous. I’ve worked my ass off at every job I’ve had, I have two Bachelor’s degrees, but I can’t get a call back or positive response from any of the applications I’ve put out in the last four years. I don’t know what I’m doing wrong. My manager told me today that he doesn’t want to lose me because I’m his hardest worker, but I’m stuck where I am. Every job I’ve wanted to apply for lately has a GPA requirement. I barely graduated college six years ago with a 2.5. But I’m smart, I just don’t test well, and with all my medical issues, college was hell. I’m smart, hard-working, and I pick new tasks up quickly, but I can’t get anyone to give me a chance. So I feel like a failure. Which leads me to feeling depressed.

    I’m 30 years old and still living with my folks because I lost my government job four years ago and was forced to move back home, and haven’t been able to make enough money to pay off all my bills and move out on my own. I just need someone to give me a chance.

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