What a great idea! you had a issue and you thought about vloging your experience so that others will learn. Good to see a real person perspective in all these Vs referring to multiple sources from Dr. Google. The perspectives from the long time horizon the videos are on is also unique. one of a kind channel for those who are effected
I am so thankful to have found your channel! I am in the process of being evaluated for venous TOS after experiencing a pulmonary embolism. Your videos have been so informative as to what I can expect if this is my ultimate diagnosis. Thank you so much for putting this all together! ❤️
I’m glad you did this video. I’m having surgery December 30th for thoracic outlet syndrome. It took 5 doctors to find it and I’m in a lot of pain. It really helps that I’m not alone seeing your story. I’ve been dealing with it for 7 months.
Hi, I hope you’re well and enjoying life! I have just finally been diagnosed of Venous Thoracic Outlet Syndrome / Paget Schroetter syndrome (PSS) after a blood clot in my subclavian vein about three years ago. I’m now currently waiting on a three month waitlist for an operation. The fight to get this probably diagnosed has been a nightmare! Thank you for the video and documenting your experience!
@@thoracicoutletsyndromether8930 Thank you so much. I have all the symptoms of TOS for over six years. Every time I visited doctors, they misdiagnosed me and even they did not believe me. At one time the Dr. told me that I may be just depressed! It is so much relief to see that I am not alone. I really appreciate you taking time and sharing your experience. I have done more than 27 weeks of physical therapy in the past nine months for misdiagnosed treatments. Until recently I have been correctly diagnosed. Now I try to navigate my options how to get treated. Thanks again.
My husband just had this surgery at Mass general hospital, Dr. Donahue specializes in this surgery, my husband has had no pain or side affects since his surgery, the hardest part is the no fat diet u need to be on after the surgery.. he was diagnosed quickly bc of blood clots..
How great that your husband was able to find a specialist who handles TOS. Blood clots are a scary thing, I'm so glad he was able to get his diagnosis quickly 💕
I’m replying back to some of your comments on here. I think it would be easier to diagnose if more people came forward with what their symptoms were. I was a heavy lifter and sport player. After a while I started getting this severe pain like in the pocket of my armpit/chest area. It would always be on the right side. Then I started to experience severe migraines and pain in only my right eye and at times it looked like my eye was hemorrhaging from being so red. Mind you this only happened positionally. If I stood up the blood vessels in my eye would go away but if I sat back down and hunched a certain way my eye would go back to be red again or when I laid down. I started experiencing severe panic like attacks. Never experienced this before I have never had panic attacks in my life but with feeling faint and about to pass out who wouldn’t freak out right!? I started getting ringing in my ears, brain fog, my hands would get swollen and red, I got really bad tremors, pain in my shoulders and stiff neck. My shoulder/collar bone makes a clicking sound when I move a certain way too. This has been the worst thing over ever had to deal with in my entire life. Just remember no one’s symptoms are the same. Everyone’s bodies are different and they react different. Advocate for yourself until you get a diagnoses. It’s been an entire year and four months and I’m still trying to see a thoracic specialist. I have had literally every blood work and test and mri cray you can think of and I’m normal perfectly healthy yet I have not had a Doppler ultrasound for thoracic. I’d like to know if anyone else has experienced the same symptoms. We can get through this just be patient!!
I have had pain and tingling in the left arm for about 5 years …. When I was 15 they gave us a wrong diagnosis of ulnar nerve damage..now I am 20 and I was first diagnosed with TOS just a year ago. I can no longer cope with the 24/7 pain and I’m trying to get a surgery … thanks for sharing your story . Truth is at some point I started feeling that it was all in my head and that I might was exaggerating !!! 🙏🏻🙏🏻
I think we’ve all been there! When there are no answers to why you’re feeling the way you are, you start to wonder if something is wrong with your mind! You’re so young, but I’m hoping that means that you’ll recover quickly from surgery! I’m hoping you get the relief you need!
I'm in a similar situation! Even with a DVT in my right arm I still keep telling myself that it's all in my head!? I'm so glad I found this channel and this comment. Putting aside the phyiscal pain; the mental battle can be just as hard at times!
I had xrays taken a few months ago that showed cervical stenosis but also showed that I have extra cervical ribs that are at c7 on both sides. I'm having a lot of numbness and pain in my shoulders and arms. I have an appointment with a surgeon later this morning, so I'm curious to see if the extra ribs may be part of the problem. The websites I looked at said that the extra ribs can cause thoracic outlet syndrome.
patient suffering from TOS only knows his/ her pain and its severity because he/ she looks absolutely normal like any other person and so society makes fun of that person and comment that patient is faking? does it happen with you?
I wouldn't say made fun of, or thought I was faking, but it was definitely hard for some to understand because they couldn't see the injury. Thoracic Outlet Syndrome was thrown out the window early on because it wasn't common, and it happened to be what I had. Regardless of what you may have encountered, know that what you're feeling is real.
@@chhharsha I had my surgery done at Mayo Clinic in Minnesota. Many people can recover well after surgery; my progress has been slow, but I am better than prior to surgery.
Interesting enough, after I had the rib removal, a few months later I was diagnosed with POTS which presented with rapid heart rate and low blood pressure. I used to have low blood pressure before the surgery, but it became significant after the surgery. I’ve always wondered if there was a link …
Did you have any hand swelling and discoloration? I have TOS, no blood clots, or arterial blockages, but have left hand swelling and discoloration (purple, blue), lots of pain in the arm, circulation issues like my hand goes very cold.
I have hypothyroidism, so I tend to have cold hands, but yes, I would occasionally notice some swelling/puffiness/color change (similar to when your hand was swollen), but it was never pitting edema (only on occasion could others notice it).
Thank you for the info. I have the symptoms. My shoulder isn't hurting now for some reason, it went away about a week ago but I'm wondering if it will come back❤️
I was recently diagnosed in June with TOS and just barely got my scalene injection yesterday. How did you feel after your first injection? I’ve been doing physical therapy and have had several test done. I’ve also had 2 cortisone shots on my shoulder. I’ve been suffering from my right shoulder pain for about 2 years and they just found it. Eevee
Hey there, agree it is so hard to find information on this. I’m headed to have the 1st rib resection surgery in a few weeks. Curious how long it will take to be able to do things like swimming etc as a dream vacation planned to snorkel in 4 months post surgery?
I believe that will depend on how quickly you recover and how intensive your post-surgery physical therapy is. Because I’m not 100% pain-free and have some weakness on my left side because of that, I still haven’t been able to do swimming strokes where my arm rotates, but then again, our experiences may be different.
My chest area right below my collarbone was very sensitive, to the point that if my seatbelt rubbed it for less than 5 minutes, my whole arm would go numb/tingling/painful. The pain and weakness I dealt with was significant. I would say I was “functionally disabled” (I don’t know if that’s a proper term). I couldn’t cook, wash dishes, clean, wash clothes, exercise, etc. I would attempt, and a few min in, I’d be in pain. I tried so many treatment modalities and failed them all. I would actually get nauseous right before the pain hit me really bad. Most nTOS cases aren’t automatically referred to surgery; however, due to the significant impact the pain had on my life, I was considered a good candidate to get the surgery.
@@thoracicoutletsyndromether8930 I forgot about the seatbelt. At one point I could never wear a seatbelt because it made me feel like I was having heart problems.
You are seen! And I am glad you were able to find what the cause was (because there’s still been some fuzziness about how mine came to be). I wish you the best! 💕
@@thoracicoutletsyndromether8930 thank you. the shakiness with mine has subsided quite a lot however when I go to reach certain ways or to pick up stuff hurts pretty bad sometimes. I am glad you were seen and heard too. all the best to an upward recovery for you ❤
They did an ultrasound during my first week of testing at the Mayo Clinic. They looked at blood flow from the neck down in the TOS related areas. I presume they checked in the scalene musclesz The lidocaine injection we did as a diagnostic test was injected into the scalene muscle.
@@wubya2000 I don't know what you are talking about but there are rather no arterial or venous forms of TOS. There are 3 forms:1.compressure of brachial plexus, brachial V and A subclavia between 1 rib and muscel scalenus anterior and medius 2 type is when compressure is between 1 rib and clavicle and 3 form compressure between clavicle and the coracoid process of the shoulder blades. Causes of compressure are additional ribs, anomalies in building of muscles additional muscle or fibers or connective tissue fibers etc. It is relativ easy to operate it. Sometimes it is following Problems -all strutures are correct but some people train much having slim, delicate body structure and it cause that these physiological structures, which are cause of compression.Symptoms dependent from location of pressure. It can be paresthesia, pain in arm, forearm, fingers 4,5. Sometimes Horner Syndrom, Additionally much more severe symptoms like circulation problems-upper limb ischemia, fainting,loss of consiences, dizziness, brainstem and cerebellum blood supply disorders. Generally, it is very hard to establish a diagnosis using only ultrosound. It was special form of easy test, which should be not carried out by himself cause of risk of loss of consciesness, maximum arm positioning backwards and downwards head to the right and upwards. The best method is analyse of symptoms and golden method is MRT.
@@thoracicoutletsyndromether8930 okay. Thank you for the quick reply. I was diagnosed with TOS but I also have ringing in my ears and was trying to see if other people have experienced the same.
Not a problem. Tinnitus can sometimes be nerve-related, but I don’t have enough background knowledge to put you in a direction for that. I hope you figure it out 😊
I have had ringing for years and I was diagnosed with mastoiditis the left ear and was told it was from TOS and I see a vascular doctor on January 12th
Hi currently going through very similar symptoms. Mine started with shoulder pain then wrist pain along with hand swelling now my whole arm feels like it’s constantly numb. My shoulder blade and neck feel stiff & it’s so hard to work on my computer, Did you have hand swelling did they go from cold to hot.
I didn’t have considerable swelling, but I did notice temperature changes between hands on occasion when I had more severe symptoms. Although, my hands usually run cold, but sometimes my left arm was warmer…I did experience the pain, numbness, and neck stiffness you’re describing…
Please be very cautious about going to a chiropractor for help. I ended up in terrible shape after going to a “well regarded” chiropractor and landed in the ER two days after my appointment because I could no longer walk without severe pain that was referred down from my brachial plexus. The ER doc was very kind and gave me some IV hydromorphone so I could enjoy Christmas Eve, he also gave me a small amount of pain meds that helped me so I could go to a movie with my sons on Christmas, which is a family tradition. This flare lasted weeks so please be very careful about chiropractic care for TOS.
@@shermac246 had more issues with osteopaths. Chiropractic works better for me. They can cause damage sometimes. Best to get massage too. Best to be cautious with every practitioner & see how your body reacts after, I find.
I may be wrong, but i didnt hear the word physiotherapist ... Perhaps you call it physical therapist in America. Isn't this something that a physiotherapist can fix plus correct exercises? Without all the specialists and surgeons?
Most people will do fine with physical therapy (PT) but there is a sizable minority of us who don’t respond to it or like me, they got worse from PT. Everyone is different when it comes to TOS.
What a great idea! you had a issue and you thought about vloging your experience so that others will learn. Good to see a real person perspective in all these Vs referring to multiple sources from Dr. Google. The perspectives from the long time horizon the videos are on is also unique. one of a kind channel for those who are effected
I am so thankful to have found your channel! I am in the process of being evaluated for venous TOS after experiencing a pulmonary embolism. Your videos have been so informative as to what I can expect if this is my ultimate diagnosis. Thank you so much for putting this all together! ❤️
Hi! I was diagnosed with venous TOS this summer after having a chest blood clot. How are you doing? Are you having the rib resection surgery?
I’m glad you did this video. I’m having surgery December 30th for thoracic outlet syndrome. It took 5 doctors to find it and I’m in a lot of pain. It really helps that I’m not alone seeing your story. I’ve been dealing with it for 7 months.
I'm hoping you find some relief!
Hello any update ?
@@hamzajaballi5926 I had my surgery and posted my updates on my RUclips channel.
10 years with TOS for me.
How are you travelling now after your surgery
Hi, I hope you’re well and enjoying life!
I have just finally been diagnosed of Venous Thoracic Outlet Syndrome / Paget Schroetter syndrome (PSS) after a blood clot in my subclavian vein about three years ago.
I’m now currently waiting on a three month waitlist for an operation. The fight to get this probably diagnosed has been a nightmare!
Thank you for the video and documenting your experience!
I’m glad that you were able to find out your issue, albeit the process being delayed. Wishing you the best in your recovery!!
Thank you for starting this channel!
Mlis you’re welcome!
Thanks for sharing your experience. It is been over six years with the symptoms of TOS. I found your video so helpful! I appreciate it.
You’re welcome! I’m hoping it gets you on your path to recovery 💕
@@thoracicoutletsyndromether8930 Thank you so much. I have all the symptoms of TOS for over six years. Every time I visited doctors, they misdiagnosed me and even they did not believe me. At one time the Dr. told me that I may be just depressed! It is so much relief to see that I am not alone. I really appreciate you taking time and sharing your experience. I have done more than 27 weeks of physical therapy in the past nine months for misdiagnosed treatments. Until recently I have been correctly diagnosed. Now I try to navigate my options how to get treated. Thanks again.
My husband just had this surgery at Mass general hospital, Dr. Donahue specializes in this surgery, my husband has had no pain or side affects since his surgery, the hardest part is the no fat diet u need to be on after the surgery.. he was diagnosed quickly bc of blood clots..
How great that your husband was able to find a specialist who handles TOS. Blood clots are a scary thing, I'm so glad he was able to get his diagnosis quickly 💕
I’m replying back to some of your comments on here. I think it would be easier to diagnose if more people came forward with what their symptoms were. I was a heavy lifter and sport player. After a while I started getting this severe pain like in the pocket of my armpit/chest area. It would always be on the right side. Then I started to experience severe migraines and pain in only my right eye and at times it looked like my eye was hemorrhaging from being so red. Mind you this only happened positionally. If I stood up the blood vessels in my eye would go away but if I sat back down and hunched a certain way my eye would go back to be red again or when I laid down. I started experiencing severe panic like attacks. Never experienced this before I have never had panic attacks in my life but with feeling faint and about to pass out who wouldn’t freak out right!? I started getting ringing in my ears, brain fog, my hands would get swollen and red, I got really bad tremors, pain in my shoulders and stiff neck. My shoulder/collar bone makes a clicking sound when I move a certain way too. This has been the worst thing over ever had to deal with in my entire life. Just remember no one’s symptoms are the same. Everyone’s bodies are different and they react different. Advocate for yourself until you get a diagnoses. It’s been an entire year and four months and I’m still trying to see a thoracic specialist. I have had literally every blood work and test and mri cray you can think of and I’m normal perfectly healthy yet I have not had a Doppler ultrasound for thoracic. I’d like to know if anyone else has experienced the same symptoms. We can get through this just be patient!!
Patience and advocating for yourself are definitely key! I did not have those symptoms, but I'm hoping you were able to find your answers
Did you find your answers please?
I have had pain and tingling in the left arm for about 5 years …. When I was 15 they gave us a wrong diagnosis of ulnar nerve damage..now I am 20 and I was first diagnosed with TOS just a year ago. I can no longer cope with the 24/7 pain and I’m trying to get a surgery … thanks for sharing your story . Truth is at some point I started feeling that it was all in my head and that I might was exaggerating !!! 🙏🏻🙏🏻
I think we’ve all been there! When there are no answers to why you’re feeling the way you are, you start to wonder if something is wrong with your mind! You’re so young, but I’m hoping that means that you’ll recover quickly from surgery! I’m hoping you get the relief you need!
I'm in a similar situation! Even with a DVT in my right arm I still keep telling myself that it's all in my head!? I'm so glad I found this channel and this comment. Putting aside the phyiscal pain; the mental battle can be just as hard at times!
Again thank you for all the information, far more great information on how they helped you and Mayo
🙏for your series
These videos are so incredibly helpful, thank you so much for sharing your story l!
You’re very welcome!
I had xrays taken a few months ago that showed cervical stenosis but also showed that I have extra cervical ribs that are at c7 on both sides. I'm having a lot of numbness and pain in my shoulders and arms. I have an appointment with a surgeon later this morning, so I'm curious to see if the extra ribs may be part of the problem. The websites I looked at said that the extra ribs can cause thoracic outlet syndrome.
patient suffering from TOS only knows his/ her pain and its severity because he/ she looks absolutely normal like any other person and so society makes fun of that person and comment that patient is faking?
does it happen with you?
I wouldn't say made fun of, or thought I was faking, but it was definitely hard for some to understand because they couldn't see the injury. Thoracic Outlet Syndrome was thrown out the window early on because it wasn't common, and it happened to be what I had. Regardless of what you may have encountered, know that what you're feeling is real.
@@thoracicoutletsyndromether8930 from where did you get your surgery done? is surgery safe option and chances of recovery from TOS? please tell
@@chhharsha I had my surgery done at Mayo Clinic in Minnesota. Many people can recover well after surgery; my progress has been slow, but I am better than prior to surgery.
I heard tos can cause tachycardia. Has anyone ever experienced tachycardia (rapid heart rate) that comes and goes with TOS?
Interesting enough, after I had the rib removal, a few months later I was diagnosed with POTS which presented with rapid heart rate and low blood pressure. I used to have low blood pressure before the surgery, but it became significant after the surgery. I’ve always wondered if there was a link …
Yes !!!! I think I have it , I have all the exact symptoms .
I commented on top can you please reply to my comment!? :)
Yes, It cause tachycardia
Did you have any hand swelling and discoloration? I have TOS, no blood clots, or arterial blockages, but have left hand swelling and discoloration (purple, blue), lots of pain in the arm, circulation issues like my hand goes very cold.
I have hypothyroidism, so I tend to have cold hands, but yes, I would occasionally notice some swelling/puffiness/color change (similar to when your hand was swollen), but it was never pitting edema (only on occasion could others notice it).
Thank you for the info. I have the symptoms. My shoulder isn't hurting now for some reason, it went away about a week ago but I'm wondering if it will come back❤️
You’re welcome 😊
I was recently diagnosed in June with TOS and just barely got my scalene injection yesterday.
How did you feel after your first injection?
I’ve been doing physical therapy and have had several test done. I’ve also had 2 cortisone shots on my shoulder. I’ve been suffering from my right shoulder pain for about 2 years and they just found it.
Eevee
I"m hoping you're on your way to feeling better.
Hey there, agree it is so hard to find information on this. I’m headed to have the 1st rib resection surgery in a few weeks. Curious how long it will take to be able to do things like swimming etc as a dream vacation planned to snorkel in 4 months post surgery?
I believe that will depend on how quickly you recover and how intensive your post-surgery physical therapy is. Because I’m not 100% pain-free and have some weakness on my left side because of that, I still haven’t been able to do swimming strokes where my arm rotates, but then again, our experiences may be different.
So... will you say the cause of this injury was due to weight training, posture or prolonged computer use?
What type of doctor diagnosis this? Chiropractor? Vascular?
What type of doctor diagnoses it ? Thanks
I wished I knew about this video it would have help me wirh my pain.
I am glad, though, that you were able to find these videos. Wishing you the best.
I may have missed it in the video but how painful was the TOS before surgery? Did you have sharp pains in your upper chest and behind collarbone?
My chest area right below my collarbone was very sensitive, to the point that if my seatbelt rubbed it for less than 5 minutes, my whole arm would go numb/tingling/painful. The pain and weakness I dealt with was significant. I would say I was “functionally disabled” (I don’t know if that’s a proper term). I couldn’t cook, wash dishes, clean, wash clothes, exercise, etc. I would attempt, and a few min in, I’d be in pain. I tried so many treatment modalities and failed them all. I would actually get nauseous right before the pain hit me really bad. Most nTOS cases aren’t automatically referred to surgery; however, due to the significant impact the pain had on my life, I was considered a good candidate to get the surgery.
@@thoracicoutletsyndromether8930 I forgot about the seatbelt. At one point I could never wear a seatbelt because it made me feel like I was having heart problems.
Boggles my mind how that works, but at least you know you’re not alone in it!
I have this an I was undiagnosed for 4 years. a box that was 40 pounds fell om me. I felt alone until i saw this video
You are seen! And I am glad you were able to find what the cause was (because there’s still been some fuzziness about how mine came to be). I wish you the best! 💕
@@thoracicoutletsyndromether8930 thank you. the shakiness with mine has subsided quite a lot however when I go to reach certain ways or to pick up stuff hurts pretty bad sometimes. I am glad you were seen and heard too. all the best to an upward recovery for you ❤
Did you have any ultrasound done of your thoracic outlet looking for entrapped nerves in the scalenes?
They did an ultrasound during my first week of testing at the Mayo Clinic. They looked at blood flow from the neck down in the TOS related areas. I presume they checked in the scalene musclesz The lidocaine injection we did as a diagnostic test was injected into the scalene muscle.
Magnetic resonance tomography so called MRT is golden standart at present time.
@@wubya2000 I don't know what you are talking about but there are rather no arterial or venous forms of TOS. There are 3 forms:1.compressure of brachial plexus, brachial V and A subclavia between 1 rib and muscel scalenus anterior and medius 2 type is when compressure is between 1 rib and clavicle and 3 form compressure between clavicle and the coracoid process of the shoulder blades. Causes of compressure are additional ribs, anomalies in building of muscles additional muscle or fibers or connective tissue fibers etc. It is relativ easy to operate it. Sometimes it is following Problems -all strutures are correct but some people train much having slim, delicate body structure and it cause that these physiological structures, which are cause of compression.Symptoms dependent from location of pressure. It can be paresthesia, pain in arm, forearm, fingers 4,5. Sometimes Horner Syndrom, Additionally much more severe symptoms like circulation problems-upper limb ischemia, fainting,loss of consiences, dizziness, brainstem and cerebellum blood supply disorders. Generally, it is very hard to establish a diagnosis using only ultrosound. It was special form of easy test, which should be not carried out by himself cause of risk of loss of consciesness, maximum arm positioning backwards and downwards head to the right and upwards. The best method is analyse of symptoms and golden method is MRT.
@@martaakh8105 what is the difference between MRI and MRT? Doing research and it sounds like they are the same.
@@adammartin4726 there is no difference.
What type of tos did you get Dx with
How are you? I'm debating surgery
What about B12 injections?
I did not try that...
I'm taking B12 sublingual supplements from nature made. Apparently they can take about 3 months to get an anagelsic effect. I started 1 month ago.
@@thoracicoutletsyndromether8930 How are you doing now? What were your doppler ultrasound results?
Hi, how are you now?
Genuine u Thankyou
Appreciate it!
Did you also have ringing in your ears?
I didn’t have any
@@thoracicoutletsyndromether8930 okay. Thank you for the quick reply. I was diagnosed with TOS but I also have ringing in my ears and was trying to see if other people have experienced the same.
Not a problem. Tinnitus can sometimes be nerve-related, but I don’t have enough background knowledge to put you in a direction for that. I hope you figure it out 😊
@@DustySteel Yes I have ringing in my ears too. It's intermittent. Not constant. How about yours?
I have had ringing for years and I was diagnosed with mastoiditis the left ear and was told it was from TOS and I see a vascular doctor on January 12th
Hi currently going through very similar symptoms. Mine started with shoulder pain then wrist pain along with hand swelling now my whole arm feels like it’s constantly numb. My shoulder blade and neck feel stiff & it’s so hard to work on my computer, Did you have hand swelling did they go from cold to hot.
I didn’t have considerable swelling, but I did notice temperature changes between hands on occasion when I had more severe symptoms. Although, my hands usually run cold, but sometimes my left arm was warmer…I did experience the pain, numbness, and neck stiffness you’re describing…
See a chiropractor if you have this & don’t get anywhere with allopathic doctors.
Please be very cautious about going to a chiropractor for help. I ended up in terrible shape after going to a “well regarded” chiropractor and landed in the ER two days after my appointment because I could no longer walk without severe pain that was referred down from my brachial plexus. The ER doc was very kind and gave me some IV hydromorphone so I could enjoy Christmas Eve, he also gave me a small amount of pain meds that helped me so I could go to a movie with my sons on Christmas, which is a family tradition. This flare lasted weeks so please be very careful about chiropractic care for TOS.
@@shermac246 had more issues with osteopaths. Chiropractic works better for me. They can cause damage sometimes. Best to get massage too. Best to be cautious with every practitioner & see how your body reacts after, I find.
What did the chiropractor do for you ?
How are you nowadays
Things are better!
Im a mess
I may be wrong, but i didnt hear the word physiotherapist ... Perhaps you call it physical therapist in America.
Isn't this something that a physiotherapist can fix plus correct exercises? Without all the specialists and surgeons?
Most people will do fine with physical therapy (PT) but there is a sizable minority of us who don’t respond to it or like me, they got worse from PT. Everyone is different when it comes to TOS.