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.
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.)
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.
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.
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
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.
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.
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!
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.
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.
Thank you so freaking much for sharing. This honestly makes me want to start a CZcams 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.
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
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
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.
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.
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.
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’m so sorry that happened to the both of you guys I pray in Jesus name you guys will both heal amen amen🙏🙏✝️✝️✝️✝️✝️❤️❤️May God bless u guys and y’all families
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.
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?
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?
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
@@B1tchydayyss 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 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
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.
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 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 for sharing. I'm going through similar struggles with getting diagnosed. 2 ER visits and no answers. Waiting on an angiogram appointment next week.
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.
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’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...
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
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
Please someone help me, i have blood clot near my hands vein and its harden but doesn't hurt when its touched or squished, it feels like a flexible bone there. Can it lead to severe complication?
Howdy. Do you remember what blood thinners you took? Any adverse reactions? I've been prescribed Eliquise. I've got a varicose vein that's close the the main vein so I get blood thinners. I'm freaking out, I ride my bike 50 miles a week and am only 42, wasn't planning on this.
Před rokem
I took Eliquis for like three years and just had super heavy periods but not other adverse reactions
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
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.
Heard ur story i see its from 2017 n wondering wjats tje put come, i know some1 going thru this now n he already had half his leg amputated n only 40. Hes on blood thinners i think he had a nad diet but he needs to choose n got about 2 weeks to decide. Yes he too about 10 weeks complaining n found out today.
Wow! Where’s the follow up? I had a clot…new veins freaked me out at first, got many in my “new” arm now. Great, life saving vlog here, thanks. I’d share my story here but ow, clots HURT even when gone there’s lots of inflammation still.
PS: male doc from home town knew I never came in unless-something was really wrong…i went in once a year maybe…I moved to a retirement town where they’re over run, I have lots of sudden health issues, had to utilize eR and urgent care because getting a primary doc takes ages here and they treat me like I’m a hypochondriac now at docs but eR always took me serious. Very dismissive…primary docs don’t know I was a nurses aid…when something is wrong your gut will ALWAYS tell you. Fight for proper care always 👍 my people. America 😂 I found a new primary doc and he takes me very serious. Doctor shop for sure. Nearly all females at eR and I had exceptional care I can say, but two primary docs that are dismissive are females within same network. White wall is real, I switched networks. Ow 😅
Sooo many inept doctors. Geesh. Now we have an idea how the poor woman felt who has been to drs for 20 yrs and finally was healed when she touched Jesus garment.
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.
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.
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.
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
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!
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
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.
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.
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 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!
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 ?
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
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
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?
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 CZcams, 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 :)
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?
“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.)
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.
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.
Thank goodness his okay im so sorry that happened to him may God bless his soul and y’all families🙏✝️✝️❤️❤️✝️🙏🙏
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
Are you feeling better now?
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.
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.
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!
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.
Thank goodness u are okay God bless🙏❤️❤️❤️✝️✝️
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.
Thank you so freaking much for sharing. This honestly makes me want to start a CZcams 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.
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
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
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.
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.
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.
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.
It's so frustrating to seek medical help, and realize that you wasted an office visit, on a *"Quack!"*
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
Thank you for sharing your story.
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’m so sorry that happened to the both of you guys I pray in Jesus name you guys will both heal amen amen🙏🙏✝️✝️✝️✝️✝️❤️❤️May God bless u guys and y’all families
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.
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?
Physical therapy is so you don’t overheal and you keep your flexibility
This is facts . Soon as they know you have lupus oh it’s related nah we know our body
I like your presentation. Please update your arm clot situation. Hope you are well.
How did you recover just with blood thinners?
my grandpa just had a stroke (but he’s ok) and now i slept on my arm wrong and need i say more
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 have this now!!! Thank you.
Most nurses have never seen upper extremity DVT so lots of times they have no idea what to do from my experience
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?
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
Are u doing okay now ?
@@B1tchydayyss 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
you are fantastic , love ya chad
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
Thank you. Was very helpful, i think i might have one in my arm. Aswell as being informative you are quite funny. Well done
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. 😊
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.
Thanks for all the information 😮
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 ❤.
Some Drs are very dismissive. No good details are given at all. I hate it that some are so non caring.
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.
My doctor would say carpal tunnel 😂
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.
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.
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’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...
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
U rock tysm 4 posting!! Very similar to mine!!
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
Please someone help me, i have blood clot near my hands vein and its harden but doesn't hurt when its touched or squished, it feels like a flexible bone there. Can it lead to severe complication?
Probably best to ask the doctors for a blood test, everyone in society tries to be lazy and save money even doctors.
Howdy. Do you remember what blood thinners you took? Any adverse reactions? I've been prescribed Eliquise. I've got a varicose vein that's close the the main vein so I get blood thinners. I'm freaking out, I ride my bike 50 miles a week and am only 42, wasn't planning on this.
I took Eliquis for like three years and just had super heavy periods but not other adverse reactions
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
Where is your blood clot at in your arm? Tricep or front of arm? Forearm?
I had DVT in my left arm
I was on anticoagulants for 6 months
What did you do to treat it pls tell me?
Just wondering did you get pain between the forearm and bicep for a couple days had a terrible dull pain there past couple days
I hope you are doing better
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.
May God bless y all and y’all families i pray and hope you guys get better in the name of Jesus I pray amen amen🙏❤️❤️❤️✝️✝️✝️✝️✝️✝️
Thank you so much God bless you honey
I am going true the said
I had the same thing! Same procedure as well (first rib resection)
Side effects of blood thinners?
I have the same thing
Heard ur story i see its from 2017 n wondering wjats tje put come, i know some1 going thru this now n he already had half his leg amputated n only 40. Hes on blood thinners i think he had a nad diet but he needs to choose n got about 2 weeks to decide. Yes he too about 10 weeks complaining n found out today.
Do you by chance have lupus?
I do not!
Great video. Just don’t hate all of us males. We’re not all bad lol
Wow! Where’s the follow up? I had a clot…new veins freaked me out at first, got many in my “new” arm now. Great, life saving vlog here, thanks. I’d share my story here but ow, clots HURT even when gone there’s lots of inflammation still.
PS: male doc from home town knew I never came in unless-something was really wrong…i went in once a year maybe…I moved to a retirement town where they’re over run, I have lots of sudden health issues, had to utilize eR and urgent care because getting a primary doc takes ages here and they treat me like I’m a hypochondriac now at docs but eR always took me serious. Very dismissive…primary docs don’t know I was a nurses aid…when something is wrong your gut will ALWAYS tell you. Fight for proper care always 👍 my people. America 😂 I found a new primary doc and he takes me very serious. Doctor shop for sure. Nearly all females at eR and I had exceptional care I can say, but two primary docs that are dismissive are females within same network. White wall is real, I switched networks. Ow 😅
Are there update vids???
Update: I'm fine lol
I have same problem toooo😣
Sooo many inept doctors. Geesh. Now we have an idea how the poor woman felt who has been to drs for 20 yrs and finally was healed when she touched Jesus garment.
An emotional reason for your arm swelling... Where did he become a doctor lmao like you're some kinda pufferfish
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!
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.
So glad everything went away for you😊
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.
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.
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!
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!
I had something like this happen. But it all came back fine although still in pain. Three years after no problem thank God.
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!
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
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!
Thanks for this very great to make us aware...this is true as a chronic pain survivor as well..
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
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
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!
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 ?
Thanks for sharing. Glad you're better.
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.
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 ?
update? I have one too...
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
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?
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 CZcams, 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 :)
Thanks for sharing your story. Very informative. 🤔😊🙄