2022 update: I never had the surgery, I got off blood thinners in May of last year, I have to wear a compression glove and sleeve whenever I workout or go on airplanes. I'm fine though! I don't really have symptoms anymore but I'm always mindful of the position of that arm. I avoid having it over my head for prolonged periods of time. I also stopped using mobility aides. 2023 update: it's so weird that this continues to be my best-performing video by an enormous margin. My channel has nothing to do with this so do not subscribe if you want more of this lol
It was very interesting to hear your story with venous TOS, and this update so thanks for sharing! I was diagnosed with the same condition a few months ago, and it all ended with me having surgery in three weeks after the first symptoms. Which felt kind of crazy because the only symptoms I had were a nasty bluish color on my arm, slight swelling and slight muscle ache like after working out. I was really lucky though because my rib didn't have to be resected, they "only" removed a couple of scalene muscles and the costoclavicular ligament. I also got a balloon angioplasty. I got off the hospital 2nd day after surgery, took painkillers for a week and that was it. The pain was never unbearable, not even close. Less than two months after the surgery I was fully functional, with virtually all pain gone. I had blood thinners for three months and now I'm off them too. I wanted to share how it was for me in case someone else with venous TOS about to have surgery needs to hear an encouraging story!
Hi I just wanted to come in here and share my story!! I am 19 years old healthy as a bean and i went through this same experience although i did the venogram, clot busters over night in the ICU and that was the worst pain ever and then I was diagnosed with Paget Schrotter Syndrome and they did my first rib resection which needed to be done! I will tell you I have been in a lot of pain in my life and went through many things and that procedure and this surgery where the two worst things ever I don’t remeber much from my stay, but I do remeber waking up in excruciating pain screaming at the top of my lungs and yelling in pain. I am a little over a month out and my incision is healed with a tiny scar in my armpit and my pain is all just minor soreness in my right upper back. I go back to work today finally!! My admission date was may 9th and today is the 17th and I’m so ready! I am still in blood thinners to prevent future clotting! But same as you I was all by myself when diagnosed with chronic DVT and this PSS so I know how this all feels! If you ever want to message about anything my socials are in my page and I’d love to chat!! ❤️
Hey there! How’s everybody doing? My name is Kevin, I’m 32 and I live in Cleveland and this is exactly what happened to me on April 6th, a Tuesday. I went in bc I had a ton of veins popping out of my arm, shoulder, neck and chest. The doctors did all of the tests and found a golf-ball sized blood clot in my shoulder and a pulmonary embolism in both lungs. April 8th, my birthday, the doctors put a “sheeth” in my arm in an attempt to break up the clot. That was 2 weeks ago. I take blood thinners, injections, twice a day. I also have DVT so this Tuesday I go in for the surgery to remove the first rib like u said in your video. I’m so scared. But this helps. Thank you for sharing and good luck🙏🏼
I'm going through this now but in my leg after a stab womb, taking blood thinners so I can relate and I hope u make a speedy recovery and for everyone else going through this.
My brother had a blood clot in his arm in his early 20’s Credit Valley hospital in Mississauge sent him home saying it’s nothing, my stepfather a veterinarian doctor took one look at his arm which was almost double the size of his other arm and said you have a blood clot. Then took him to Oakville Trafalgar hospital where he was admitted immediately. If he had gone home instead of my parents house he would have died. It took a veterinarian to diagnose him with no scans what an ER doctor missed. It’s scary and proves if you feel like something is wrong get a second opinion. Apparently blood clots are common with males who work out regularly with weights I’m guessing it could be common for women who do a lot of weight work also.
There is nothing so infuriating as being blown off by doctors when you know something is wrong. It happened to me when I had cancer, they just didn't think a college student would have that in spite of obvious swelling on my neck that just kept getting larger. Then decades later, it was an AVM which radiologists wrote off twice in spite of it showing on brain scans. It wasn't until it caused a stroke and nearly killed me that they took the images, that had plainly showed something was amiss, seriously.
This was me the other night, but I was getting ready to tie up my tomatoes, so I didn't call the triage nurse until I was done gardening. I knew she would send me to the ER asap, and she did. (Possible symptoms of pneumonia, but I checked out fine.)
I had a similar experience with several doctors through an entire summer telling me it was a bakers cyst. I finally diagnosed it using Google. My friend went with me when She started talking law suit. They had 8-10 people attending me. They admit me into the hospital still telling me after seeing a Doppler test and they were still saying, "I don't know what it is?" The second week in the hospital.. the shift of doctors changes, and an older doctor finally said "it's a blood clot!" So he started treatment with blood thinner and moist heating@105* . This past month the just gave me blood thinner and sent me home. Now I need follow up care and can't find anyone who will see me.
I had the same exact thing. I 2006 I had a blood clot in my arm and was diagnosed with TOS. I went to several surgeons for opinions and decided to seek out a specialist in CO (I live in CT). I had my rib removed, part of my scalene muscle and something else. Needless to say, I not only have it in my right side but left as well. I only had surgery on the right and am careful with arm movements on the left. Good luck with whatever decision you make. It’s not easy but it helped me
Wow, I dont want to do that my blood clot was 2 yrs ago, I'm on blood thinners with the same as everyone else in the comment section, lupus, severe anxiety, fibromyalgia, and all the rest. I have to say I have found a good dr here in KY. Had My surgery at U .K. hospital.
WOW. I had a very similar experience, i knew something was wrong and nobody would believe me or my pain. They said it was SVT despite the fact that ive had a blood clot in my arm before. NOW i have a full on DVT and my arm hurts so much! I cant even describe the amount of pain that i feel. Now ive gotta take eloquis for the next 6 months or even longer. When i told them i also have chronic pain.... its like some docs take that info and run with it and rule out anything else. My arm isnt as swollen as yours seems to be but you can absolutely see the lumps in it and how odd it looks. DVT is nothing to mess around with but these docs make us wait and risk our lives. I had my first doc exam and they dismissed me and a month later is when i discovered i had been right and there is an issue. I wish doctors would trust our word before it turns into something that could have been avoided. I am glad that you are on the mend!
I had a DVT last December and I was eventually told I had Thoracic Outlet Syndrome as well. I decided to get the surgery and it went very well. They did remove a rib and some muscle but it was actually very quick and efficient surgery. It was only 1 hour, I left the hospital the next day and my arm was back to normal after 1 month. Nothing to worry about. Hope all goes well for you.
I have ehlers danlos syndrome. My mother had it too. After she gave birth to my little sister the doctors told her the severe crippling abdominal pain she was having was just gas from the c-section, they called her a baby and had her walking the hallways because that would "fix" things. they were rude and condescending pieces of shit. my mom bled to death from a ruptured aneurysm and no one was ever held accountable for it.
Thank you for this video. Doctor and nurse looked at me like I was confused. I showed them pictures of the redness and they was like oh maybe just hives or maybe just stress. They ignored it and said it would go away once I get stress and anxiety under control. I never said I was stress but they literally took me being a stay at home and homeschool mom and just said it’s stress. I’m never stressed until this redness appears with warmth and increase of heart rate.
Most doctors irritate the hell out of me. Its like they get paid the most money to do absolutely nothing. I started giving the lazy ones horrible reviews online or asking to switch doctors while making it known to the nurses, MA's and everyone in the office so they usually end up trying to act better. Don't get me started on male gynecologists..ugh. I hope you're doing better.
I also have Vtos and had a dvt in my axillary and subclavian veins last February. I totally relate to your experience, I also cried at every dr appointment! I have been lucky I realised immediately and had a thrombectomy few days later. Yes physio can help but I decided to be on blood thinner for life, because NO you don't die with them, they actually save you life Tos surgery most of the time goes wrong! Plus its very painful and with a long recovery Hope you are feeling better!
I'm glad I heard your story cause I've been waking up every morning with my left hand and arm swollen and pain in my upper part of my back. Getting it check out tomorrow. Thanks
Read my story, I dont know how all of you with common symptoms as I have got away with this. I would have lost my arm or died with out emergency surgery. It all happened so fast! In 15 minutes after the pain and swelling started my hand flipped, with no control .I hope things went well for you.
😱 I’ve been through near death experiences from male doctors. But a female gyn royally screwed me by not staying on top of two cysts. In April I was diagnosed by another doctor because I was advocating with stage 3 ovarian. I then went to Sloan Kettering has a radical hysterectomy and learned I also have stage 4 uterine cancer. I had symptoms that were being treated for other issues. I hate Dr. N, who was the best in town. So you aren’t alone, and I wish you well. I’m in NYS.
I was just diagnosed 2 days ago with a dvp in the same spot but on my right arm. It's in the brachial vein . Our story is the exact same, it's sorta scary. But I made the mistake of telling the first er Dr I saw that I was in recovery, so I was there for 5 minutes and he said it was cellulitis from standing 4 ft away from me... he didnt do any test, he went off ignorance and egotistical fumes, but he gave me antibiotics for an infection I did not have and sent me on my way after only being there no more than 15 minutes from walk in to walk out. Then about 4 hours later I was miserable and it was taking over my entire arm, well finally i broke 3 hours later to go to the 2nd ER which was the final thank god. What's crazy, first Dr was a male. Second was a woman. And the woman had lost her dad to an overdose. I was balling, and told her that knew it was from my drug use, but I have been clean for over a year along with MAT and bi weekly drug screens. She looked at me, wiped a tear away and said "no judgement, just compassion " and she knew within seconds of looking at it, it was either a n blood clot or an infecting but she said that the tests would tell, and sure enough, I have a very large blood clot in my arm. Any advice on what to do about the first Dr, because the woman Dr said if I would've not came when I did, it would've been life threatening. I'm on a blood thinner now, it's looking better but still soooooo freaking painful!! I can't do anything to relieve the pain really except for lay it still till it either stops hurting or goes numb.
Love how you're still smiling through this! So frustrating when they're sort of flippant and don't find anything. Then to suggest it's emotional? WT actual eff? I'm having a wierd sort of pinched feeling in the inside of my left elbow, sort of like I'm giving blood but I'm not. Also a small bruise higher up on the same arm. I'm scheduled to see my doctor on Tuesday for something else and I'm going to mention this
i feel that in my right arm right around the funny bone but it feels like maybe a ball or mass of some sort n a tink brusie above the same arm...it makes my arm hurt some and hands tingle im scared idk
Just wanted to say thank you, your video and especially your photos helped convinced someone I know to go in to the ER. They had a DVT in their arm. They probably would have let it sit longer if not for you.
emotional arm swelling is definitely a new one for me. wow. i am so sorry about male doctors. they suck. i'm also sorry about the possible rib removal situation. that's really intense. I am crossing all the parts of me that will cross & knocking on all of the wooden things that physio will be enough for you and your rib will remain yours
Thank you so freaking much for sharing. This honestly makes me want to start a UA-cam channel because what would I have done if I didn’t see this? I have chronic illness and all morning I’ve been like gaslighting myself about my arm as it gets more painful and swollen. Thank you so much.
Dismissive doctors (seriously, what is it about the male doctors that do that!?) are the worst. So frustrating!! Glad it finally got figured out for you!
Thank you for sharing- I have one too! My primary doc was out when I went in with swelling and pain. Luckily they sent me for an ultrasound, but then they were like you have DVT, here's some blood thinners, k bye. I had so many questions I had to wait to have answered. So sorry for the horrible care you received- that makes me so angry.
I’ve had a clot in my arm for 6 months now. From being a meat cutter for 9 years. Got the rib removal surgery but had to go back to work cause nothing is affordable these days and I ran out of sick time no end in sight
WOW, this video. May have saved me. I may have that thoracic outlet syndrome. I been to the ER and many doctors for years and no one can figure out what is going on with me. And no one will do a ct scan or any deeper work. Just so happened on Dec. 1 an ER visit tells me I have a blood clot in my calf. its DVT. So they gave me blood thinners. I have had this chest problem since 2019. All this time, this problem could have been solved if someone would have done a CT scan. I don't understand. Doesn't matter whether its male doctors, female doctors for me they are all the same. They don't seem to care. I have an appt to follow up regarding my DVT and I will ask all these questions. Thank you for your testimony and update.
I have this exact same surgery and end up finding out that I have it the same way you did I ended up with several blood clots in my arms over a period of almost two years I kept complaining that my arm hurts so bad I couldn't stand I was constantly crying long story short they removed the rib and my muscle, since then I've had another surgery this is been over the last 10 years it is so hard to do anything because my arms are in constant pain and my neck. I am constantly getting blood clots I have one in my jugular now and they're saying it's a secondary of the TOs I honestly don't think anyone really knows what TOS is and now my granddaughter just found out she has it. I have almost lost my life three different times because they insist that there's nothing wrong when I know there is these doctors are so complacent anymore and you're right the minute they find out you have chronic pain or on pain medicine they accuse you of being a drug addict. I am to the point where I am trying alternative medicine Natural Things I think a lot of my problems are associated with the things that they have done to me and all the surgeries so please before you do anything extreme check into natural remedies because this has been a very very painful process and never helped anyting just made it worse. I wish you the best of luck honey. And another thing I will mention to you therepy makes things much much worse I get therapy for 4 years my granddaughter's been doing it have made her much worse good luck to you
I have the same thing!! I was sent to the ER two months ago. I've had my first my resected 8 weeks ago. I'm back in hospital tomorrow for a follow up procedure to see how it goes =)
Hey Erin... I’m in process for being diagnosed with TOS.. so far I’ve been diagnosed with a blood clot in my subclavian vein... what should I expect should I be diagnosed and need the surgery ?
Thank you so so much for your video about this because this is where I've been Doctor's can't figure out what's going on they're dismissing me too. 🙏 it is painful, horrible experience.
I also have VTOS, I have it on both sides in fact haha. I've got pretty extensive blood clots on both sides, but mine are in the arteries instead of the veins which is pretty weird, and both first ribs have gotta go. Glad to have found someone with something very similar!
Reneé! Holy moly! I was empathizing and giggling with you while I watched this video. I went through the same sort of thing and I'm still navigating this odd journey. I got a DVT in my right arm/subclavian vein in February. I didn't go in to see a doc for over 2 weeks because I didn't think it was a big deal...and who would think of getting an upper extremity blood clot...at age 26 for that matter. Anyways, Took months for docs to figure out why. Venous TOS! And yeah my vasc surgeon was like yeah ya just need a rib resection. And I was like okay sweet. And then I looked it up like you and I'm like NO THANKS!!! haha this is why I was laughing because your journey sounds a lot like mine! I have been seeing chiropractors & PTs and I'm going to start rolfing and acupuncture as well. How are you doing with your 'red arm'? Are you still trying alternatives to surgery? Thanks for this video, it's great to know there's someone out there who is going through the same weird stuff. -Amanda
Hi Renée, I hope your're doing well! You've got another vTOS/nTOS friend right here! I have a very similar story to yours. In December 2024 they discovered a blood clut in my right arm (right underneath my collarbone) and when doing a CT-scan 3 months later, they diagnosed the TOS. Currently, I'm taking blood thinners for 3 more months (6 in total) and undergoing a few more tests to see if surgery is necessary or if I can 'live' with no surgery and no blood thinners. It is quite a risk because I could get a DVT on the other side once I'm off the blood thinners. But I'm being followed up. It's scary and the thought of living with this while not being able to swim, boulder or surf anymore (my passions) is weighing on me a lot. If you have any tips in the meantime, you're very welcome to share! I wish you all the best.
Im right there with you. It is infuriating and frustrating when youre trying to find the right Doctor to help you. Over several weeks you go from PCP to Neurologist to Chiropractor to Rheumatologist to Physical Therapist to Osteopath. Spending money , wasting time, being in pain
OMG I don’t know you, but I want to hug you! My journey has been so very similar all the way down to noticing my arm turning red after washing my hair. Your Doctor T is my Doctor H! He literally said to me “I find it highly unlikely that you have all of this wrong with you.” I also started to cry. I had been to multiple specialists and thought a neurologist of all people could get me some answers. He suggest I sleep on banked up pillows and would I like a prescription for antidepressants. So now I’m really crying and he thinks I’m crazy. Taking things in my own hands I do a Roos test and videotaped the results. Raging purple red arm within 30 seconds. Finally proof on film. I told doctors I had raging pain down my neck, under my collar bone, blue veins across the right side of my chest blah blah. Doctors never touch you or so an exam. Just shrug their shoulders and say I don’t know and shove you to the next doctor. FINALLY I got a neurosurgeon to listen and look at the video of my arm. I still have had no study done of the veins in my arm, but I have symptoms of a clot in my arm. ER doctors will only focus on my head and neck. But, thanks to my neurosurgeon I have a referral to a TOS specialist at the University of Utah. They reviewed and took my case based on my symptoms and video. A year and half journey. Fingers crossed for my specialist visit.
Im in the middle of having my blood clot they said it was a superficial vein thrombosis i went in on my sec day of having it its 3 inch by a half inch ugh it hurts like hell but will go away on its own
I had a blood clot in my upper left arm 6 inches past the bend of my arm and in less than 30 minutes my hand turned purple and just flopped. I had no control over it.I went to E. R.and a doctor came and looked at my hand and sent me to a bigger local hospital 30 minutes away and did emergency surgery and said we might need to amputate from your elbow to your hand. If it doesn't go to your brain and kill you. Basically telling my husband and family this cause I was incoherent with pain. So i SERIOUSLY recommend you make a decision quickly.Take care.
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Janet Wilson everyone has their own unique situation, Janet. I’m sorry yours was so extreme and traumatic but mine isn’t like that. It’s been three years since this incident and I never did surgery and I’m fine.
Peter Killelea yeah it's good just taking blood thining injections which I finish tomorrow the in two weeks I'll get a blood test and check up thanks for replying
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I hope things are going a little better now. I know everything takes so long in this medical field. Wishing you solace!
I have had 3 or 4 pic line in 7 months the last one clogged with a blood clot now i could not have survived without it be cause I could not eat for 17 weeks and it cloged the last ten days but it worked on only one input I had also received 6 units of blood. After the last operation to remove Adhesions and some of my small intestine that had died this makes a total of 6 operations since I was crushed by 50,000 pounds in 1980 by a oil drilling rig. Any way its been 10 weeks since I got out and the 150 pounds i lost is back to 190. While the nurses had tried to clear the pic line with blood thinner And a syringe 5 different times and I told them to stop because all they wore doing was pushing a blood clot back into my heart a ultimately my lunges. Well it happened the clot freed up and went into my lunges. Just resently and the pain was the worst I have ever had. All I could do was lay there and hurt and I just don't know what I should do. I have a probate hearing Tuesday. Oh the humanity and the pain what should I do?
Thank you for sharing. I'm going through similar struggles with getting diagnosed. 2 ER visits and no answers. Waiting on an angiogram appointment next week.
Hi! I just checked you out, liked what I saw, and tapped the bell! I have a genetic blood disorder that can cause clotting called Factor Five Leiden, so your story hits home. I am very interested to follow this saga. Take Care.
Same here. But never heard of your disorder . Gonna look it up cause I'm continuously searching for answers. Obviously, I on the same page with the rest of you.
I have a clot from near my elbow to into my neck vein. I have been sent home with injections to self inject for 30 days. I asked to see a vein specialist and was told I dont need to. Suggestion is that I am making a fuss over nothing. Also told I dont need to exercise, I had asked should I walk more to get the blood flowing. My arm and shoulder hurt and I am very worried. I think I should exercise more and see a vein specialist. Watching you say that raising your arm is bad has thrown me as I have been raising mine thinking i was helping to drain the fluid. IDK what to think now. I am having treatment for cancer. I had to have it through cannulas due to no staff to place the picc line. I have been showing doctors and nurses for weeks my swollen sore wrist and told I was imaging it, it was not that bad. They then placed a picc line and are trying to convince me it is the picc that caused it. The swelling etc predates the picc by weeks. They are the ones telling me I dont need to go to get advice from anyone else. I was told by them I need a picc that cannulas would damage my veins then they could not get staff to place the picc. The picc line staff were all off on sick leave.
Glad your ok I had PE in lungs 10 years ago they never found the cause I think I did the TOS tests because I was pitching at the time. Now in 2023 I have dvt in my right arm I think from an IV but idk they said I had an old clot in my shoulder. Might have that TOS test ran again but they said if you have two dvt you are on blood thinners forever.
My wife has chronic pain from Fibromyalgia and this kind of response to pain all the time. It's pretty much up to me to push her to figure it out but I'll be honest most of the solutions have been us at home with Diet and life changes because most Doctors don't believe it or they over prescribe. I empathize with you so much!!
I think I have exactly what you have and i mean " EXACTLY " in my left atrium vein,left arm.cant believe I found someone like me.Gonna watch more and c maybe I might pick up on a few things.cheers.
I cannot believe they would not do an ultrasound from the start. Exactly why I am in charge of my own health and I do all my own followups and research now. I have a bloodclot in my arm right now thanks to a botched angiogram (they tried the arm first which didnt work) so now Im worse than before the angioplasty. Great that yours is gone. I have been searching all over online to see if I should be using my arm with the clot....or not. Of course my two doctors are on vacation and you get to put your life in the hands of a lab technician....thanks for posting your video.
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There's so little information out there, I understand your frustration! I hope you get some answers soon and I hope this video helped you feel a little less alone in your struggle.
thanks! yes, posting your video helped me and im sure helped many others....also helped me find a really good singer too! It's supposedly in my radial artery...good thing Im not a piano player.... Thanks so much for your reply!
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Oof sounds painful. Mine was in the subclavian vein. I'm glad you enjoy my music! Solidarity!
My left arm swelled up this sunday.. and after going to the hospital we found out that it was a blood clot after 24h. Im using blood thinners now, hopefully it help so i may not need to do the surgery. Im still afraid tho, but after watching this i got some encouragement
@𝗕𝗲𝗮𝗿𝘆𝗯𝗼𝗼💗 yes, thank you. Im back to 100% activity :) The doctors is reducing my blood thinners slowly, and still doing a regular checkup once every 3 months
@late night talk with babymoma Hey, I used eliquis 5mg. And a compression for better blood circulation. The compression helped to relieve the pain, during activity. Wish you all the best
I’m so sorry doctors treated you this way. My mother had hip replacement surgery at 45 and when she later complained of leg pain they also accused her of seeking drugs due to her past. She died the day they sent her home from the hospital and it was later revealed that a dislodged blood clot was the cause. Please seek out different doctors that truly care and hope you’re doing better ❤.
Great video 😎🔥 I know you want viewers to watch all the way through, but may I request you put vTOS in the title of this video? When you search 'Venous Thoracic Outlet Syndrome' on UA-cam, there aren't many videos of personal stories and for someone who didn't receive a diagnosis for 10 months, the journey feels incredibly lonely and only upon watching your video did I realise that there are people going through the exact same thing. Just a suggestion :)
After 5 months of agony, I was finally officially diagnosed with VTOS today! You are so spot on about chronic pain & male Dr's. PT did not work for me. How did this end?
Going through a very similar thing, right now. I've been diagnosed with an upper body deep vein thrombosis and multiple pulmonary emboli. My medical team at Stanford can't figure out the why's. Currently being treated on Xaralto, and will have the venogram procedure done next Monday to determine whether or not it is safe enough to try to *bust* the clot and remove and also to determine if my anatomy is at play - the clavicle/first rib dilemma in relationship to vessel compression, etc. and whether or not they want to remove the rib. Hope you're doing better now. I looked for a follow up video, but couldn't find one. Feeling super weirded out about all of this.
@@Shersteph I’m happy to share what I can. They did a multitude of tests trying to figure out the why’s and then a venogram to determine anatomical considerations not seen fully on CT/MRI. Good news: no CA or other genetic considerations (they tested me for everything while in the hospital and before consulting vascular surgery). What I ended up having done is this: thrombolysis during the venogram mid-February to get rid of the DVT, and more data they needed to diagnose me with venous thoracic outlet syndrome. I do not meet any criteria for this diagnosis - I’m an anomaly. On 03/11 I had my first right rib resected (and another venogram) - Stanford does it as an in-house outpatient procedure (same day discharge). I’m been on Xarelto since December 1st. I’m still on it (a lower dose, as is the norm). I have a follow-up on 04/13 with the surgeon and to have another ultrasound done (in an effort to determine whether or not all of the occlusion has resolved and to discuss continuation of the Xarelto). The surgery was painless and easy. If you have to have the surgery, don’t be afraid. One of my phobias involved general anesthesia not working - it was completely unfounded (overshare, haha). It was a little painful after (but completely manageable with pain meds). I stayed in a hotel near campus to be extra safe and because I had a drain that needed to be removed the next day. My surgical site is all but healed. My clavicle is sore (nothing big, just not normal). I have almost full range of motion. Good luck to you. Feel free to ask anything I may have forgotten. I’ll help in any way I can.
Are you on birth control? If you are, then that could also be a factor. I had 1 clot on my arm and 1 clot in my leg. At any moment I could die if they get loose and travel. I hate it. Going to have surgery and lets see what happens?
I have this going on now and could use your help Renee, or anyone who is experienced with TOSyndrome, Upper Extremity Blood Clots, etc. Here goes: Basically 3-4 weeks ago I notice my left bicep feels tight,.. I think I pulled it or something -- my upper left chest and arm feels odd but I think nothing of it. I have horrendous chronic pain so like Renee here -- I don't think much of a 'new' pain.. it's pretty common and you can't run to the doctor for every new pain. Anyhow -- I'm doing my own homework -- my symptoms are Swollen left arm -- RED left arm -- Tender left arm (especially in bicep/upper chest area) -- Warm to touch -- And I have collateral veins like crazy out of NOWHERE. They virtually seemed to happen overnight. So now I have these veins that pop up on my left chest just under the collar bone that head towards the left shoulder area and down that arm. There is an even bigger vein(s) popping out and curling around on the left bicep now as well. I can 'pump up' these veins with activity easily. Anyhow - Seems fairly obvious this is an Upper Extremity Blood Clot (cause I don't know). I go to my Doctor soon after -- And he is dismissive but says since *I* will worry -- he will order a Doppler of my arm. I'm like ok, great. I go next day for Doppler. Doppler comes back NEGATIVE! Ok that's great but it's also not great. Cause I don't know what to do. This MUST be a clot/obstruction -- there's no way it couldn't be. It's like taking a hose and kinking it -- I can literally see the collateral veins 'popping out' due to the plumbing (vein(s)) being clogged to some degree. The Arm is also constantly a different (red) color -- It's a CLOT/blockage. What do I do? What is the 'perfect' doctor type to go to , to get this sorted out once and for all without more questions or it being a waste of my time? I'm ready to go. My doctor just dismissed me with the Negative Doppler. (My arm is still swollen, tender, painful, red, veins still popping out like they NEVER have before, etc.. why IGNORE all that?). Could this be Thoracic Outlet Syndrome? I dunno -- That's better than say.. another cause -- CANCER! I'm terrified I have Cancer that is causing this. Or some other terminal illness I will die from over next couple of years. I am a caucasian Male,.. 38 Years old. I would say this has existed in this form for 3-4 weeks (Maybe I noticed it feeling 'funny' a few weeks before that.. but definitely not like it has been). Guys, Ladies -- Please help me with advice. I even quit smoking for good a week ago due to this! I've been taking a dozen supplements (a few that are known to get rid of clots and heal heart, help blood etc). -- I'm eating healthy and I'm exercising. Prior to this happening.. I was very sedentary (computer all day), poor diet, and smoked. So that's all changed, albeit over short period of time. I am currently 6ft tall, ~200lbs to give you an idea of size. Just for reference the Supplements I am on: Nattokinase (Helps clots), Serrapeptase (Again another Clot breaking enzyme), -- Then fairly regular supplements: Garlic, Fish Oil, Co-Q-10, Vitamin E, Ginkgo Biloba, and Vitamin C. [So Far those seem to be the best ones for my particular 'issues']. I do NOT want to go get shipped off to the Emergency Room -- Even with clots that's not standard practice anymore. It's generally treated with oral blood thinner medication and the Subcutaneous anti coagulant medication -- with follow up's every X days. Just no reason to keep people in hospitals overnight anymore for things like this (no advantage) -- unless it embolized (moved to lungs/brain etc). I am thinking of going to a Vascular Clinic here but I don't know if that's the best place to go or if there's a better type of doctor to go to for this? Please, please help. My email address is ikoslog@gmail.com - So if you would rather send an email you can reach me there. Thank you!
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I can't give medical advice but it sounds like you're worried. I would definitely seek the help of another doctor or even go back to your first doctor but bring a friend who can help advocate for you. I know how frustrating and scary this is and I'm sorry you're going through this.
Damn. I had an IV put in for fluids and a week later woke up with a blood clot in my superficial vein. They said it will dissolve on its own but it still hurts and it is still there. Smaller but there.
I’m 41 and this exact thing happen to me. Went to ER a week later my arm up in the upper area became red. Went to doctor and the dude said just take Motrin lol 4 weeks later it’s hurting more. went to go get an ultrasound and the superficial basilic vein is clogged up. Anyways, been on eliquis blood thinners for 3 half months now. Specialist basically told me to get off the thinners and that nothing can be done. On to natural remedies. See if that works Let me know if you have any ideas. Good luck
@@queenwein16 ya mine feels as if I have a partial dead arm at times, feels a bit cold at times and also as if I hit my funny bone. The sensations are crazy. So it starts up near my armpit near my left side of chest. I sometimes get these weird stabs on the left Side of my peck near my armpit. I been reading up on Google To find natural remedies and also have my best friend who knows a lot of these doctors that practice natural treatments. I actually stayed today with some of The stuff that is recommended. I’m an athlete so having a partial left arm isn’t going to work out for me hahaha let’s see what happens
I literally just went to the hospital last night due to pain in my arm. It is a bloodclot. They dont know how I got it (which is very disturbing) and I'm scared. I dont know what to make of this
I was diagnosed with a blood clot in my left shoulder a week ago. I went to the emergency room. They did an x-Ray, blood work, CT scan and lastly an ultrasound. Which is how they found the clot. They have me taking a blood thinner call Xalerto. My arm is still swollen .I can't stretch it out nor can I raise it past my ear. I'm in so much pain.
I’m going thru the same thing, my leg is killing me and i got a bump behind my knee. I think it is a bakers cyst but a doctor said that they didn’t feel anything and I had to show them then they said it was normal and I showed them my other leg and asked why doesn’t that one have it then they said yeah that’s not normal and they didn’t know what it was but that I should be fine. Now I feel pinching all through out my legs and they hurt bad idk what to do tho
Ugh. I have venous thoracic outlet syndrome. My doctor also refused to diagnose me. Luckily, I never clotted. Unfortunately, because they waited so long, it’s “chronic” and might not get better with surgery due to the stenosis of the subclavian, so they haven’t risked it. My arm is still swollen. It’s pretty crappy, but hey, at least I got to keep my arm? I’m also not on blood thinners. Talk about some backward-ass treatment. I feel for you dealing with this.
Hello. You have exactly what is wrong with me. I'm still waiting to get the surgery. My surgeon told me it would prevent me from getting another clot. I've never heard of this condition before until now. That's how I found out about everything. I went to the er cause my right arm was swollen and red and I had neck and shoulder pain for awhile, and tingling in my fingers and hand. Did you ever get the surgery? I'm currently on blood thinners now till the surgery.
I’m not saying all male doctors are sociopathic to women patients. I’m just saying I’ve only met one who isn’t. I have chronic illness and see a lot of doctors both male and female...
I'm having some weird stuff going on in my left leg and I also have chronic pain.. And you young lady, you're so right..They keep telling me that I have sciatica for bursitis.. Ok why did it get worse when I had injections in my legs? Lol.. And their answer was that I have a severe case.. Come on now.. Crazy Mess for sure... I can be awake for almost 2 days because I cannot lay down.. When I touch my left leg anywhere when I do lay down my entire leg feels like the circulation is being cut off and it's very painful.. I have a mega lump on my left waist line area and the back of my left leg.. Well the Dr's tell me that it's normal.. So I ask if I could see there's if it is that normal.. I wouldn't even call it a lump on my waistline, I call it a ledge because I can put a cigarette lighter on it now and it won't fall off.. I've been having this problem for around 1 year now almost and it's just getting worse
Is there a follow up video to this? I couldn’t find it. So what did you end up doing to fix the clot? I know someone in the same exact boat right now..
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sg5 three years later and I’m still on blood thinners. No more clot but I’ll be at risk for clots for the rest of my life and need to wear compression sleeves when flying or exercising. We decided the compression wasn’t severe enough to merit surgery.
How are you? I hope you're doing well did the massage therapy ever work for you? Thank you for an informative video currently having horrible pain on my left arm definitely in the vein and I didn't realize how serious it was until it started hurting today in the lump started forming.... The whole part about losing a rib super intimidating I hope you're doing well I would be super interested to know if the massage therapy worked
I ran across your story and I'm going theought the exact same thing! First, hiw are you doing? Second, my issue is one us showed a clot in brachial vein twice then I got a second opinion and theirs showed no clot. Mu d you I have purple arm, swollen, amd pain. The discoloration gets worse when my arm is hanging down. I am now scheduled for a venogram. I would love to hear how the procedure is done as my dr sais its invasive.
My arm is hurting between the shoulder and elbow, this the second time this has happened to me, hit hurts when I cough. The last time it took about a month to get better or back to normal, I am wondering if it is a blood clot? I have had thyroid cancer and had surgery and now My neck hurts and I don’t sleep right, I do have my arm above my head like you did in this video I am making appointments to see doctor tomorrow
My chiropractor told me I have TOS on the left side when I started having numbness in my fingers and pain in my wrist. Now I am having severe pain in my upper arm, neck, and chest near my collar bone. My hand keeps turning red and swelling and it hurts so bad and then it turns purple-blue and gets ice cold. This morning the pain was really bad in my upper arm and I noticed a small bruise where the pain is the worst. Does this sound like a clot?? I’m really scared. The doctors in my small town sound just like the terrible one you dealt with. Should I go to the ER maybe?
2022 update: I never had the surgery, I got off blood thinners in May of last year, I have to wear a compression glove and sleeve whenever I workout or go on airplanes. I'm fine though! I don't really have symptoms anymore but I'm always mindful of the position of that arm. I avoid having it over my head for prolonged periods of time. I also stopped using mobility aides.
2023 update: it's so weird that this continues to be my best-performing video by an enormous margin. My channel has nothing to do with this so do not subscribe if you want more of this lol
It was very interesting to hear your story with venous TOS, and this update so thanks for sharing! I was diagnosed with the same condition a few months ago, and it all ended with me having surgery in three weeks after the first symptoms. Which felt kind of crazy because the only symptoms I had were a nasty bluish color on my arm, slight swelling and slight muscle ache like after working out. I was really lucky though because my rib didn't have to be resected, they "only" removed a couple of scalene muscles and the costoclavicular ligament. I also got a balloon angioplasty. I got off the hospital 2nd day after surgery, took painkillers for a week and that was it. The pain was never unbearable, not even close. Less than two months after the surgery I was fully functional, with virtually all pain gone. I had blood thinners for three months and now I'm off them too. I wanted to share how it was for me in case someone else with venous TOS about to have surgery needs to hear an encouraging story!
Thanks for the update glad you are ok and thanks for the info
I have this and someone told me to look up your video. Thank you so much!!
Hi I just wanted to come in here and share my story!! I am 19 years old healthy as a bean and i went through this same experience although i did the venogram, clot busters over night in the ICU and that was the worst pain ever and then I was diagnosed with Paget Schrotter Syndrome and they did my first rib resection which needed to be done! I will tell you I have been in a lot of pain in my life and went through many things and that procedure and this surgery where the two worst things ever I don’t remeber much from my stay, but I do remeber waking up in excruciating pain screaming at the top of my lungs and yelling in pain. I am a little over a month out and my incision is healed with a tiny scar in my armpit and my pain is all just minor soreness in my right upper back. I go back to work today finally!! My admission date was may 9th and today is the 17th and I’m so ready! I am still in blood thinners to prevent future clotting! But same as you I was all by myself when diagnosed with chronic DVT and this PSS so I know how this all feels! If you ever want to message about anything my socials are in my page and I’d love to chat!! ❤️
This post was from 5 yrs ago and you were only off of blood thinners last year? Ooof
Hey there! How’s everybody doing? My name is Kevin, I’m 32 and I live in Cleveland and this is exactly what happened to me on April 6th, a Tuesday. I went in bc I had a ton of veins popping out of my arm, shoulder, neck and chest. The doctors did all of the tests and found a golf-ball sized blood clot in my shoulder and a pulmonary embolism in both lungs. April 8th, my birthday, the doctors put a “sheeth” in my arm in an attempt to break up the clot. That was 2 weeks ago. I take blood thinners, injections, twice a day. I also have DVT so this Tuesday I go in for the surgery to remove the first rib like u said in your video. I’m so scared. But this helps. Thank you for sharing and good luck🙏🏼
How are you doing
I'm going through this now but in my leg after a stab womb, taking blood thinners so I can relate and I hope u make a speedy recovery and for everyone else going through this.
GET CHECKED for Polycythemia Vera (Bone Marrow Cancer) as that causes clots.
ARe you alright?
My brother had a blood clot in his arm in his early 20’s Credit Valley hospital in Mississauge sent him home saying it’s nothing, my stepfather a veterinarian doctor took one look at his arm which was almost double the size of his other arm and said you have a blood clot. Then took him to Oakville Trafalgar hospital where he was admitted immediately. If he had gone home instead of my parents house he would have died. It took a veterinarian to diagnose him with no scans what an ER doctor missed. It’s scary and proves if you feel like something is wrong get a second opinion. Apparently blood clots are common with males who work out regularly with weights I’m guessing it could be common for women who do a lot of weight work also.
There is nothing so infuriating as being blown off by doctors when you know something is wrong. It happened to me when I had cancer, they just didn't think a college student would have that in spite of obvious swelling on my neck that just kept getting larger. Then decades later, it was an AVM which radiologists wrote off twice in spite of it showing on brain scans. It wasn't until it caused a stroke and nearly killed me that they took the images, that had plainly showed something was amiss, seriously.
“But I left my lunch in my car” 😆. That’s so me lol! That’s why I’m sitting here now like should I go to the ER or clean up my bathroom first lol
This was me the other night, but I was getting ready to tie up my tomatoes, so I didn't call the triage nurse until I was done gardening. I knew she would send me to the ER asap, and she did. (Possible symptoms of pneumonia, but I checked out fine.)
This sounds like my experience with doctors. Wish you well sweetie❤
I had a similar experience with several doctors through an entire summer telling me it was a bakers cyst. I finally diagnosed it using Google. My friend went with me when She started talking law suit. They had 8-10 people attending me. They admit me into the hospital still telling me after seeing a Doppler test and they were still saying, "I don't know what it is?" The second week in the hospital.. the shift of doctors changes, and an older doctor finally said "it's a blood clot!"
So he started treatment with blood thinner and moist heating@105* .
This past month the just gave me blood thinner and sent me home. Now I need follow up care and can't find anyone who will see me.
Ubelievable.
Unbelievable. State do you live in
Right now I'm THANKFUL to be in KY. And have doctors that fight like pitbulls for me!
I had the same exact thing. I 2006 I had a blood clot in my arm and was diagnosed with TOS. I went to several surgeons for opinions and decided to seek out a specialist in CO (I live in CT). I had my rib removed, part of my scalene muscle and something else. Needless to say, I not only have it in my right side but left as well. I only had surgery on the right and am careful with arm movements on the left. Good luck with whatever decision you make. It’s not easy but it helped me
I have had my first rib removed June 6th of this year. This is a good video to see. It kinda gave me hope. Your not alone.
Wow, I dont want to do that my blood clot was 2 yrs ago, I'm on blood thinners with the same as everyone else in the comment section, lupus, severe anxiety, fibromyalgia, and all the rest. I have to say I have found a good dr here in KY. Had My surgery at U .K. hospital.
Please rush with these symptoms. Purple means AMPUTATION.
WOW. I had a very similar experience, i knew something was wrong and nobody would believe me or my pain. They said it was SVT despite the fact that ive had a blood clot in my arm before. NOW i have a full on DVT and my arm hurts so much! I cant even describe the amount of pain that i feel. Now ive gotta take eloquis for the next 6 months or even longer. When i told them i also have chronic pain.... its like some docs take that info and run with it and rule out anything else. My arm isnt as swollen as yours seems to be but you can absolutely see the lumps in it and how odd it looks. DVT is nothing to mess around with but these docs make us wait and risk our lives. I had my first doc exam and they dismissed me and a month later is when i discovered i had been right and there is an issue. I wish doctors would trust our word before it turns into something that could have been avoided. I am glad that you are on the mend!
I had a DVT last December and I was eventually told I had Thoracic Outlet Syndrome as well. I decided to get the surgery and it went very well. They did remove a rib and some muscle but it was actually very quick and efficient surgery. It was only 1 hour, I left the hospital the next day and my arm was back to normal after 1 month. Nothing to worry about. Hope all goes well for you.
I have ehlers danlos syndrome. My mother had it too. After she gave birth to my little sister the doctors told her the severe crippling abdominal pain she was having was just gas from the c-section, they called her a baby and had her walking the hallways because that would "fix" things. they were rude and condescending pieces of shit. my mom bled to death from a ruptured aneurysm and no one was ever held accountable for it.
Wow, Speechless. So Sorry!
Thank you for this video. Doctor and nurse looked at me like I was confused. I showed them pictures of the redness and they was like oh maybe just hives or maybe just stress. They ignored it and said it would go away once I get stress and anxiety under control. I never said I was stress but they literally took me being a stay at home and homeschool mom and just said it’s stress. I’m never stressed until this redness appears with warmth and increase of heart rate.
Thanks for this very great to make us aware...this is true as a chronic pain survivor as well..
They totally treat you differently when you have chronic pain or also anxiety :(
Biased dumb doctors
Most doctors irritate the hell out of me. Its like they get paid the most money to do absolutely nothing. I started giving the lazy ones horrible reviews online or asking to switch doctors while making it known to the nurses, MA's and everyone in the office so they usually end up trying to act better. Don't get me started on male gynecologists..ugh. I hope you're doing better.
Sounds to me you may just be a confrontationalist.
@user-ki3ym2km3g Yea, so shut up.
@@IndigoCosmic LOL, that was cute.
I also have Vtos and had a dvt in my axillary and subclavian veins last February. I totally relate to your experience, I also cried at every dr appointment! I have been lucky I realised immediately and had a thrombectomy few days later.
Yes physio can help but I decided to be on blood thinner for life, because NO you don't die with them, they actually save you life
Tos surgery most of the time goes wrong! Plus its very painful and with a long recovery
Hope you are feeling better!
I'm glad I heard your story cause I've been waking up every morning with my left hand and arm swollen and pain in my upper part of my back. Getting it check out tomorrow. Thanks
Read my story, I dont know how all of you with common symptoms as I have got away with this. I would have lost my arm or died with out emergency surgery. It all happened so fast! In 15 minutes after the pain and swelling started my hand flipped, with no control .I hope things went well for you.
@IamRxJ Vegan wow. Ty. BE BLESSED
😱 I’ve been through near death experiences from male doctors. But a female gyn royally screwed me by not staying on top of two cysts. In April I was diagnosed by another doctor because I was advocating with stage 3 ovarian. I then went to Sloan Kettering has a radical hysterectomy and learned I also have stage 4 uterine cancer. I had symptoms that were being treated for other issues. I hate Dr. N, who was the best in town. So you aren’t alone, and I wish you well. I’m in NYS.
I was just diagnosed 2 days ago with a dvp in the same spot but on my right arm. It's in the brachial vein . Our story is the exact same, it's sorta scary. But I made the mistake of telling the first er Dr I saw that I was in recovery, so I was there for 5 minutes and he said it was cellulitis from standing 4 ft away from me... he didnt do any test, he went off ignorance and egotistical fumes, but he gave me antibiotics for an infection I did not have and sent me on my way after only being there no more than 15 minutes from walk in to walk out. Then about 4 hours later I was miserable and it was taking over my entire arm, well finally i broke 3 hours later to go to the 2nd ER which was the final thank god. What's crazy, first Dr was a male. Second was a woman. And the woman had lost her dad to an overdose. I was balling, and told her that knew it was from my drug use, but I have been clean for over a year along with MAT and bi weekly drug screens. She looked at me, wiped a tear away and said "no judgement, just compassion " and she knew within seconds of looking at it, it was either a n blood clot or an infecting but she said that the tests would tell, and sure enough, I have a very large blood clot in my arm. Any advice on what to do about the first Dr, because the woman Dr said if I would've not came when I did, it would've been life threatening. I'm on a blood thinner now, it's looking better but still soooooo freaking painful!! I can't do anything to relieve the pain really except for lay it still till it either stops hurting or goes numb.
Love how you're still smiling through this! So frustrating when they're sort of flippant and don't find anything. Then to suggest it's emotional? WT actual eff? I'm having a wierd sort of pinched feeling in the inside of my left elbow, sort of like I'm giving blood but I'm not. Also a small bruise higher up on the same arm. I'm scheduled to see my doctor on Tuesday for something else and I'm going to mention this
i feel that in my right arm right around the funny bone but it feels like maybe a ball or mass of some sort n a tink brusie above the same arm...it makes my arm hurt some and hands tingle im scared idk
Just wanted to say thank you, your video and especially your photos helped convinced someone I know to go in to the ER. They had a DVT in their arm. They probably would have let it sit longer if not for you.
Bloody hell!!! You could’ve died and all they were telling you was the swelling was from emotions? 😡
My TIA was ignored and now I have to have tests for clots because of my diagnosis of “you must be depressed” . I not depressed, I’m pissed.
emotional arm swelling is definitely a new one for me. wow. i am so sorry about male doctors. they suck. i'm also sorry about the possible rib removal situation. that's really intense. I am crossing all the parts of me that will cross & knocking on all of the wooden things that physio will be enough for you and your rib will remain yours
Thanks, Rin! I hope so too!
Thank you so freaking much for sharing. This honestly makes me want to start a UA-cam channel because what would I have done if I didn’t see this? I have chronic illness and all morning I’ve been like gaslighting myself about my arm as it gets more painful and swollen. Thank you so much.
Thanks for sharing. Glad you're better.
I had something like this happen. But it all came back fine although still in pain. Three years after no problem thank God.
Dismissive doctors (seriously, what is it about the male doctors that do that!?) are the worst. So frustrating!! Glad it finally got figured out for you!
Thank you for sharing- I have one too! My primary doc was out when I went in with swelling and pain. Luckily they sent me for an ultrasound, but then they were like you have DVT, here's some blood thinners, k bye. I had so many questions I had to wait to have answered. So sorry for the horrible care you received- that makes me so angry.
They have just done the exact same to me…hope u are ok
Thank you for this I went today for my left leg throbbing and it moved to my left arm. Doctor said blood test was normal and sent me home.
I’ve had a clot in my arm for 6 months now. From being a meat cutter for 9 years. Got the rib removal surgery but had to go back to work cause nothing is affordable these days and I ran out of sick time no end in sight
Thank you for sharing your story.
WOW, this video. May have saved me. I may have that thoracic outlet syndrome. I been to the ER and many doctors for years and no one can figure out what is going on with me. And no one will do a ct scan or any deeper work. Just so happened on Dec. 1 an ER visit tells me I have a blood clot in my calf. its DVT. So they gave me blood thinners. I have had this chest problem since 2019. All this time, this problem could have been solved if someone would have done a CT scan. I don't understand. Doesn't matter whether its male doctors, female doctors for me they are all the same. They don't seem to care. I have an appt to follow up regarding my DVT and I will ask all these questions. Thank you for your testimony and update.
I had no damn idea the flow of blood can be different based on the position of your arm. That’s crazy , thank you for the video
I have this exact same surgery and end up finding out that I have it the same way you did I ended up with several blood clots in my arms over a period of almost two years I kept complaining that my arm hurts so bad I couldn't stand I was constantly crying long story short they removed the rib and my muscle, since then I've had another surgery this is been over the last 10 years it is so hard to do anything because my arms are in constant pain and my neck. I am constantly getting blood clots I have one in my jugular now and they're saying it's a secondary of the TOs I honestly don't think anyone really knows what TOS is and now my granddaughter just found out she has it. I have almost lost my life three different times because they insist that there's nothing wrong when I know there is these doctors are so complacent anymore and you're right the minute they find out you have chronic pain or on pain medicine they accuse you of being a drug addict. I am to the point where I am trying alternative medicine Natural Things I think a lot of my problems are associated with the things that they have done to me and all the surgeries so please before you do anything extreme check into natural remedies because this has been a very very painful process and never helped anyting just made it worse. I wish you the best of luck honey. And another thing I will mention to you therepy makes things much much worse I get therapy for 4 years my granddaughter's been doing it have made her much worse good luck to you
I have the same thing!! I was sent to the ER two months ago. I've had my first my resected 8 weeks ago. I'm back in hospital tomorrow for a follow up procedure to see how it goes =)
Hey Erin... I’m in process for being diagnosed with TOS.. so far I’ve been diagnosed with a blood clot in my subclavian vein... what should I expect should I be diagnosed and need the surgery ?
Thank you so so much for your video about this because this is where I've been Doctor's can't figure out what's going on they're dismissing me too. 🙏 it is painful, horrible experience.
I also have VTOS, I have it on both sides in fact haha. I've got pretty extensive blood clots on both sides, but mine are in the arteries instead of the veins which is pretty weird, and both first ribs have gotta go. Glad to have found someone with something very similar!
Mine was also an artery!
Reneé! Holy moly! I was empathizing and giggling with you while I watched this video. I went through the same sort of thing and I'm still navigating this odd journey. I got a DVT in my right arm/subclavian vein in February. I didn't go in to see a doc for over 2 weeks because I didn't think it was a big deal...and who would think of getting an upper extremity blood clot...at age 26 for that matter. Anyways, Took months for docs to figure out why. Venous TOS! And yeah my vasc surgeon was like yeah ya just need a rib resection. And I was like okay sweet. And then I looked it up like you and I'm like NO THANKS!!! haha this is why I was laughing because your journey sounds a lot like mine! I have been seeing chiropractors & PTs and I'm going to start rolfing and acupuncture as well. How are you doing with your 'red arm'? Are you still trying alternatives to surgery? Thanks for this video, it's great to know there's someone out there who is going through the same weird stuff.
-Amanda
Amanda Ellis literally exactly the same story for me... not sure if I’ll opt for surgery or not... how is your TOS now ?
Thanks for sharing your story. Very informative. 🤔😊🙄
Hi Renée, I hope your're doing well!
You've got another vTOS/nTOS friend right here! I have a very similar story to yours. In December 2024 they discovered a blood clut in my right arm (right underneath my collarbone) and when doing a CT-scan 3 months later, they diagnosed the TOS. Currently, I'm taking blood thinners for 3 more months (6 in total) and undergoing a few more tests to see if surgery is necessary or if I can 'live' with no surgery and no blood thinners. It is quite a risk because I could get a DVT on the other side once I'm off the blood thinners. But I'm being followed up. It's scary and the thought of living with this while not being able to swim, boulder or surf anymore (my passions) is weighing on me a lot. If you have any tips in the meantime, you're very welcome to share!
I wish you all the best.
How did you recover just with blood thinners?
Im right there with you. It is infuriating and frustrating when youre trying to find the right Doctor to help you. Over several weeks you go from PCP to Neurologist to Chiropractor to Rheumatologist to Physical Therapist to Osteopath. Spending money , wasting time, being in pain
WHY WOULD EMOTIONS CAUSE ARM SWELLING I'm mad
I could have died! I'm mad too!!
I’m mad about this too! Doctors like this are so dangerous
Wow!
Calm down Virginia! Please!! If you don't, you might develop a blood clot in your arm!
OMG I don’t know you, but I want to hug you! My journey has been so very similar all the way down to noticing my arm turning red after washing my hair. Your Doctor T is my Doctor H! He literally said to me “I find it highly unlikely that you have all of this wrong with you.” I also started to cry. I had been to multiple specialists and thought a neurologist of all people could get me some answers. He suggest I sleep on banked up pillows and would I like a prescription for antidepressants. So now I’m really crying and he thinks I’m crazy. Taking things in my own hands I do a Roos test and videotaped the results. Raging purple red arm within 30 seconds. Finally proof on film. I told doctors I had raging pain down my neck, under my collar bone, blue veins across the right side of my chest blah blah. Doctors never touch you or so an exam. Just shrug their shoulders and say I don’t know and shove you to the next doctor. FINALLY I got a neurosurgeon to listen and look at the video of my arm. I still have had no study done of the veins in my arm, but I have symptoms of a clot in my arm. ER doctors will only focus on my head and neck. But, thanks to my neurosurgeon I have a referral to a TOS specialist at the University of Utah. They reviewed and took my case based on my symptoms and video. A year and half journey. Fingers crossed for my specialist visit.
Im in the middle of having my blood clot they said it was a superficial vein thrombosis i went in on my sec day of having it its 3 inch by a half inch ugh it hurts like hell but will go away on its own
I have this now!!! Thank you.
I like your presentation. Please update your arm clot situation. Hope you are well.
I had a blood clot in my upper left arm 6 inches past the bend of my arm and in less than 30 minutes my hand turned purple and just flopped. I had no control over it.I went to E. R.and a doctor came and looked at my hand and sent me to a bigger local hospital 30 minutes away and did emergency surgery and said we might need to amputate from your elbow to your hand. If it doesn't go to your brain and kill you. Basically telling my husband and family this cause I was incoherent with pain. So i SERIOUSLY recommend you make a decision quickly.Take care.
Janet Wilson everyone has their own unique situation, Janet. I’m sorry yours was so extreme and traumatic but mine isn’t like that. It’s been three years since this incident and I never did surgery and I’m fine.
@ I'm glad your doing well. Continuously I hooe. Be Blessed. Ty.
Eyebrows are on point.
I had a blood clot in my arm last month it's the most scariest thing that's happened to me honestly and I am still taking the blood thinner injections
hows it going?
Peter Killelea yeah it's good just taking blood thining injections which I finish tomorrow the in two weeks I'll get a blood test and check up thanks for replying
I hope things are going a little better now. I know everything takes so long in this medical field. Wishing you solace!
Renée Yoxon yeah thanks been doing alot better but it's definitely not a thing I would like to experience again
I have had 3 or 4 pic line in 7 months the last one clogged with a blood clot now i could not have survived without it be cause I could not eat for 17 weeks and it cloged the last ten days but it worked on only one input I had also received 6 units of blood.
After the last operation to remove
Adhesions and some of my small intestine that had died this makes a total of 6 operations since I was crushed by 50,000 pounds in 1980 by a oil drilling rig. Any way its been 10 weeks since I got out and the 150 pounds i lost is back to 190. While the nurses had tried to clear the pic line with blood thinner
And a syringe 5 different times and I told them to stop because all they wore doing was pushing a blood clot back into my heart a ultimately my lunges. Well it happened the clot freed up and went into my lunges. Just resently and the pain was the worst I have ever had. All I could do was lay there and hurt and I just don't know what I should do. I have a probate hearing Tuesday. Oh the humanity and the pain what should I do?
oh you poor bugger. i sincerely hope it turns out ok for you. i can imagine how freaked out about the rib resection, i would be too.
Thank you for sharing. I'm going through similar struggles with getting diagnosed. 2 ER visits and no answers. Waiting on an angiogram appointment next week.
Hi! I just checked you out, liked what I saw, and tapped the bell! I have a genetic blood disorder that can cause clotting called Factor Five Leiden, so your story hits home. I am very interested to follow this saga. Take Care.
Same here. But never heard of your disorder . Gonna look it up cause I'm continuously searching for answers. Obviously, I on the same page with the rest of you.
Thanks for all the information 😮
update? I have one too...
I have a clot from near my elbow to into my neck vein. I have been sent home with injections to self inject for 30 days. I asked to see a vein specialist and was told I dont need to. Suggestion is that I am making a fuss over nothing. Also told I dont need to exercise, I had asked should I walk more to get the blood flowing. My arm and shoulder hurt and I am very worried. I think I should exercise more and see a vein specialist. Watching you say that raising your arm is bad has thrown me as I have been raising mine thinking i was helping to drain the fluid. IDK what to think now. I am having treatment for cancer. I had to have it through cannulas due to no staff to place the picc line. I have been showing doctors and nurses for weeks my swollen sore wrist and told I was imaging it, it was not that bad. They then placed a picc line and are trying to convince me it is the picc that caused it. The swelling etc predates the picc by weeks. They are the ones telling me I dont need to go to get advice from anyone else. I was told by them I need a picc that cannulas would damage my veins then they could not get staff to place the picc. The picc line staff were all off on sick leave.
you are fantastic , love ya chad
Most nurses have never seen upper extremity DVT so lots of times they have no idea what to do from my experience
It's so frustrating to seek medical help, and realize that you wasted an office visit, on a *"Quack!"*
Glad your ok I had PE in lungs 10 years ago they never found the cause I think I did the TOS tests because I was pitching at the time. Now in 2023 I have dvt in my right arm I think from an IV but idk they said I had an old clot in my shoulder. Might have that TOS test ran again but they said if you have two dvt you are on blood thinners forever.
My wife has chronic pain from Fibromyalgia and this kind of response to pain all the time. It's pretty much up to me to push her to figure it out but I'll be honest most of the solutions have been us at home with Diet and life changes because most Doctors don't believe it or they over prescribe. I empathize with you so much!!
Doctors can be the worst sometimes.
Dr me too. What kind of diet and what else?
I think I have exactly what you have and i mean " EXACTLY " in my left atrium vein,left arm.cant believe I found someone like me.Gonna watch more and c maybe I might pick up on a few things.cheers.
Troy White mine is on my right arm, actually!
I cannot believe they would not do an ultrasound from the start. Exactly why I am in charge of my own health and I do all my own followups and research now. I have a bloodclot in my arm right now thanks to a botched angiogram (they tried the arm first which didnt work) so now Im worse than before the angioplasty. Great that yours is gone. I have been searching all over online to see if I should be using my arm with the clot....or not. Of course my two doctors are on vacation and you get to put your life in the hands of a lab technician....thanks for posting your video.
There's so little information out there, I understand your frustration! I hope you get some answers soon and I hope this video helped you feel a little less alone in your struggle.
thanks! yes, posting your video helped me and im sure helped many others....also helped me find a really good singer too! It's supposedly in my radial artery...good thing Im not a piano player....
Thanks so much for your reply!
Oof sounds painful. Mine was in the subclavian vein. I'm glad you enjoy my music! Solidarity!
My left arm swelled up this sunday.. and after going to the hospital we found out that it was a blood clot after 24h. Im using blood thinners now, hopefully it help so i may not need to do the surgery. Im still afraid tho, but after watching this i got some encouragement
@𝗕𝗲𝗮𝗿𝘆𝗯𝗼𝗼💗 yes, thank you. Im back to 100% activity :)
The doctors is reducing my blood thinners slowly, and still doing a regular checkup once every 3 months
@late night talk with babymoma Hey, I used eliquis 5mg. And a compression for better blood circulation. The compression helped to relieve the pain, during activity. Wish you all the best
How did they find it? I feel so powerless against the docs they just dismissed everything
@@engineeredtruths8935 my doctor didn’t find anything at first, but then they tried ultrasound and found it
Some Drs are very dismissive. No good details are given at all. I hate it that some are so non caring.
I'm scared. I think I tore my rotator cuff but wonder if it's a blood clot. Can't be seen for a week
I just found out I have a clot in my arm too. The first 2 drs dismisses me and finally they found it. Did your swelling go down?
With blood thinners, yes.
my grandpa just had a stroke (but he’s ok) and now i slept on my arm wrong and need i say more
oh well i hope your doing welland staying strongsending love strength to you
This just happened to me after having heart surgery. My doctors were completely dismissive and basically accused me of seeking drugs.
I’m so sorry doctors treated you this way. My mother had hip replacement surgery at 45 and when she later complained of leg pain they also accused her of seeking drugs due to her past. She died the day they sent her home from the hospital and it was later revealed that a dislodged blood clot was the cause. Please seek out different doctors that truly care and hope you’re doing better ❤.
Thank you. Was very helpful, i think i might have one in my arm. Aswell as being informative you are quite funny. Well done
Great video 😎🔥 I know you want viewers to watch all the way through, but may I request you put vTOS in the title of this video? When you search 'Venous Thoracic Outlet Syndrome' on UA-cam, there aren't many videos of personal stories and for someone who didn't receive a diagnosis for 10 months, the journey feels incredibly lonely and only upon watching your video did I realise that there are people going through the exact same thing. Just a suggestion :)
U rock tysm 4 posting!! Very similar to mine!!
After 5 months of agony, I was finally officially diagnosed with VTOS today! You are so spot on about chronic pain & male Dr's. PT did not work for me. How did this end?
I hope you are doing better
Going through a very similar thing, right now. I've been diagnosed with an upper body deep vein thrombosis and multiple pulmonary emboli. My medical team at Stanford can't figure out the why's. Currently being treated on Xaralto, and will have the venogram procedure done next Monday to determine whether or not it is safe enough to try to *bust* the clot and remove and also to determine if my anatomy is at play - the clavicle/first rib dilemma in relationship to vessel compression, etc. and whether or not they want to remove the rib. Hope you're doing better now. I looked for a follow up video, but couldn't find one. Feeling super weirded out about all of this.
@@Shersteph I’m happy to share what I can. They did a multitude of tests trying to figure out the why’s and then a venogram to determine anatomical considerations not seen fully on CT/MRI. Good news: no CA or other genetic considerations (they tested me for everything while in the hospital and before consulting vascular surgery). What I ended up having done is this: thrombolysis during the venogram mid-February to get rid of the DVT, and more data they needed to diagnose me with venous thoracic outlet syndrome. I do not meet any criteria for this diagnosis - I’m an anomaly. On 03/11 I had my first right rib resected (and another venogram) - Stanford does it as an in-house outpatient procedure (same day discharge). I’m been on Xarelto since December 1st. I’m still on it (a lower dose, as is the norm). I have a follow-up on 04/13 with the surgeon and to have another ultrasound done (in an effort to determine whether or not all of the occlusion has resolved and to discuss continuation of the Xarelto). The surgery was painless and easy. If you have to have the surgery, don’t be afraid. One of my phobias involved general anesthesia not working - it was completely unfounded (overshare, haha). It was a little painful after (but completely manageable with pain meds). I stayed in a hotel near campus to be extra safe and because I had a drain that needed to be removed the next day. My surgical site is all but healed. My clavicle is sore (nothing big, just not normal). I have almost full range of motion. Good luck to you. Feel free to ask anything I may have forgotten. I’ll help in any way I can.
@@user-ij9bs9ke9j Thanks for sharing. I have my Venogram on Friday, it’s good to read stories of people that have gone through it!
@@fasanimal3555 you’ve got this. Don’t worry. The venogram was quick and easy - waiting was the hardest part. 😊
Are you on birth control? If you are, then that could also be a factor. I had 1 clot on my arm and 1 clot in my leg. At any moment I could die if they get loose and travel. I hate it. Going to have surgery and lets see what happens?
I have this going on now and could use your help Renee, or anyone who is experienced with TOSyndrome, Upper Extremity Blood Clots, etc.
Here goes:
Basically 3-4 weeks ago I notice my left bicep feels tight,.. I think I pulled it or something -- my upper left chest and arm feels odd but I think nothing of it. I have horrendous chronic pain so like Renee here -- I don't think much of a 'new' pain.. it's pretty common and you can't run to the doctor for every new pain.
Anyhow -- I'm doing my own homework -- my symptoms are Swollen left arm -- RED left arm -- Tender left arm (especially in bicep/upper chest area) -- Warm to touch -- And I have collateral veins like crazy out of NOWHERE. They virtually seemed to happen overnight. So now I have these veins that pop up on my left chest just under the collar bone that head towards the left shoulder area and down that arm. There is an even bigger vein(s) popping out and curling around on the left bicep now as well.
I can 'pump up' these veins with activity easily.
Anyhow - Seems fairly obvious this is an Upper Extremity Blood Clot (cause I don't know).
I go to my Doctor soon after -- And he is dismissive but says since *I* will worry -- he will order a Doppler of my arm. I'm like ok, great. I go next day for Doppler.
Doppler comes back NEGATIVE!
Ok that's great but it's also not great. Cause I don't know what to do. This MUST be a clot/obstruction -- there's no way it couldn't be. It's like taking a hose and kinking it -- I can literally see the collateral veins 'popping out' due to the plumbing (vein(s)) being clogged to some degree. The Arm is also constantly a different (red) color -- It's a CLOT/blockage.
What do I do? What is the 'perfect' doctor type to go to , to get this sorted out once and for all without more questions or it being a waste of my time? I'm ready to go.
My doctor just dismissed me with the Negative Doppler. (My arm is still swollen, tender, painful, red, veins still popping out like they NEVER have before, etc.. why IGNORE all that?).
Could this be Thoracic Outlet Syndrome? I dunno -- That's better than say.. another cause -- CANCER! I'm terrified I have Cancer that is causing this. Or some other terminal illness I will die from over next couple of years.
I am a caucasian Male,.. 38 Years old. I would say this has existed in this form for 3-4 weeks (Maybe I noticed it feeling 'funny' a few weeks before that.. but definitely not like it has been).
Guys, Ladies -- Please help me with advice. I even quit smoking for good a week ago due to this! I've been taking a dozen supplements (a few that are known to get rid of clots and heal heart, help blood etc). -- I'm eating healthy and I'm exercising. Prior to this happening.. I was very sedentary (computer all day), poor diet, and smoked. So that's all changed, albeit over short period of time.
I am currently 6ft tall, ~200lbs to give you an idea of size.
Just for reference the Supplements I am on: Nattokinase (Helps clots), Serrapeptase (Again another Clot breaking enzyme), -- Then fairly regular supplements: Garlic, Fish Oil, Co-Q-10, Vitamin E, Ginkgo Biloba, and Vitamin C. [So Far those seem to be the best ones for my particular 'issues'].
I do NOT want to go get shipped off to the Emergency Room -- Even with clots that's not standard practice anymore. It's generally treated with oral blood thinner medication and the Subcutaneous anti coagulant medication -- with follow up's every X days. Just no reason to keep people in hospitals overnight anymore for things like this (no advantage) -- unless it embolized (moved to lungs/brain etc).
I am thinking of going to a Vascular Clinic here but I don't know if that's the best place to go or if there's a better type of doctor to go to for this? Please, please help. My email address is ikoslog@gmail.com - So if you would rather send an email you can reach me there. Thank you!
I can't give medical advice but it sounds like you're worried. I would definitely seek the help of another doctor or even go back to your first doctor but bring a friend who can help advocate for you. I know how frustrating and scary this is and I'm sorry you're going through this.
See a vascular surgeon and get a venogram... it's better way to look at veins and obstructions than an ultrasound!
Damn. I had an IV put in for fluids and a week later woke up with a blood clot in my superficial vein. They said it will dissolve on its own but it still hurts and it is still there. Smaller but there.
I’m 41 and this exact thing happen to me.
Went to ER a week later my arm up in the upper area became red. Went to doctor and the dude said just take Motrin lol 4 weeks later it’s hurting more. went to go get an ultrasound and the superficial basilic vein is clogged up. Anyways, been on eliquis blood thinners for 3 half months now. Specialist basically told me to get off the thinners and that nothing can be done. On to natural remedies. See if that works
Let me know if you have any ideas. Good luck
@@JohnRestrepo-lm5uc thank you. They didn't even give me any blood thinners. Mine is in the cephalic vein. It feels like a constant Charley horse
@@queenwein16 ya mine feels as if I have a partial dead arm at times, feels a bit cold at times and also as if I hit my funny bone.
The sensations are crazy. So it starts up near my armpit near my left side of chest. I sometimes get these weird stabs on the left
Side of my peck near my armpit.
I been reading up on Google
To find natural remedies and also have my best friend who knows a lot of these doctors that practice natural treatments. I actually stayed today with some of
The stuff that is recommended. I’m an athlete so having a partial left arm isn’t going to work out for me hahaha let’s see what happens
@@JohnRestrepo-lm5uchow did you get on
@@JohnRestrepo-lm5uchow did you get on
i hope your arm gets better!
I don't have a clot anymore, thank for asking!
Renée Yoxon That's awesome! I hope you didn't have to remove a rib in the end.
Physical therapy is so you don’t overheal and you keep your flexibility
I literally just went to the hospital last night due to pain in my arm. It is a bloodclot. They dont know how I got it (which is very disturbing) and I'm scared. I dont know what to make of this
I was diagnosed with a blood clot in my left shoulder a week ago. I went to the emergency room. They did an x-Ray, blood work, CT scan and lastly an ultrasound. Which is how they found the clot. They have me taking a blood thinner call Xalerto. My arm is still swollen .I can't stretch it out nor can I raise it past my ear. I'm in so much pain.
@@TheTikela Hi dear, are you better now?
I’m going thru the same thing, my leg is killing me and i got a bump behind my knee. I think it is a bakers cyst but a doctor said that they didn’t feel anything and I had to show them then they said it was normal and I showed them my other leg and asked why doesn’t that one have it then they said yeah that’s not normal and they didn’t know what it was but that I should be fine. Now I feel pinching all through out my legs and they hurt bad idk what to do tho
I had the same thing! Same procedure as well (first rib resection)
Hi! I found your video after I ended up in the hospital with a blood clot and raised first rib. I wonder how you are now.
Ugh. I have venous thoracic outlet syndrome. My doctor also refused to diagnose me. Luckily, I never clotted. Unfortunately, because they waited so long, it’s “chronic” and might not get better with surgery due to the stenosis of the subclavian, so they haven’t risked it. My arm is still swollen. It’s pretty crappy, but hey, at least I got to keep my arm? I’m also not on blood thinners. Talk about some backward-ass treatment. I feel for you dealing with this.
Coming back to update. Clotted yesterday under the clavicle. I jinxed myself,
Hello. You have exactly what is wrong with me. I'm still waiting to get the surgery. My surgeon told me it would prevent me from getting another clot. I've never heard of this condition before until now. That's how I found out about everything. I went to the er cause my right arm was swollen and red and I had neck and shoulder pain for awhile, and tingling in my fingers and hand. Did you ever get the surgery? I'm currently on blood thinners now till the surgery.
I’m not saying all male doctors are sociopathic to women patients. I’m just saying I’ve only met one who isn’t. I have chronic illness and see a lot of doctors both male and female...
Did you have any type of pain in your arm or shoulder?
I'm having some weird stuff going on in my left leg and I also have chronic pain.. And you young lady, you're so right..They keep telling me that I have sciatica for bursitis.. Ok why did it get worse when I had injections in my legs? Lol.. And their answer was that I have a severe case.. Come on now.. Crazy Mess for sure... I can be awake for almost 2 days because I cannot lay down.. When I touch my left leg anywhere when I do lay down my entire leg feels like the circulation is being cut off and it's very painful.. I have a mega lump on my left waist line area and the back of my left leg.. Well the Dr's tell me that it's normal.. So I ask if I could see there's if it is that normal.. I wouldn't even call it a lump on my waistline, I call it a ledge because I can put a cigarette lighter on it now and it won't fall off.. I've been having this problem for around 1 year now almost and it's just getting worse
Is there a follow up video to this? I couldn’t find it. So what did you end up doing to fix the clot? I know someone in the same exact boat right now..
sg5 three years later and I’m still on blood thinners. No more clot but I’ll be at risk for clots for the rest of my life and need to wear compression sleeves when flying or exercising. We decided the compression wasn’t severe enough to merit surgery.
Great info thnx
How are you? I hope you're doing well did the massage therapy ever work for you? Thank you for an informative video currently having horrible pain on my left arm definitely in the vein and I didn't realize how serious it was until it started hurting today in the lump started forming.... The whole part about losing a rib super intimidating I hope you're doing well I would be super interested to know if the massage therapy worked
This is facts . Soon as they know you have lupus oh it’s related nah we know our body
I ran across your story and I'm going theought the exact same thing! First, hiw are you doing? Second, my issue is one us showed a clot in brachial vein twice then I got a second opinion and theirs showed no clot. Mu d you I have purple arm, swollen, amd pain. The discoloration gets worse when my arm is hanging down. I am now scheduled for a venogram. I would love to hear how the procedure is done as my dr sais its invasive.
My arm is hurting between the shoulder and elbow, this the second time this has happened to me, hit hurts when I cough. The last time it took about a month to get better or back to normal, I am wondering if it is a blood clot? I have had thyroid cancer and had surgery and now My neck hurts and I don’t sleep right, I do have my arm above my head like you did in this video I am making appointments to see doctor tomorrow
I have the same thing
My chiropractor told me I have TOS on the left side when I started having numbness in my fingers and pain in my wrist. Now I am having severe pain in my upper arm, neck, and chest near my collar bone. My hand keeps turning red and swelling and it hurts so bad and then it turns purple-blue and gets ice cold. This morning the pain was really bad in my upper arm and I noticed a small bruise where the pain is the worst. Does this sound like a clot?? I’m really scared. The doctors in my small town sound just like the terrible one you dealt with. Should I go to the ER maybe?
I have the same symptoms but they can't find a clot. Thank God, but it's so frustrating.
I would appreciate if you connect with me . We have the same issues.