I’m in the military and let me tell you how unfamiliar they are with TOS. I have been dealing with my pain and complications for 4 years now before I finally came across a vascular surgeon that was able to possibly diagnose me with NTOS. There is so little I am able to do as an engineer that they are considering discharging me. I have just started undergoing my first round of BoTox injections, however, I haven’t noticed any change. My surgeon is also only familiar with removing the first or cervical rib (which I do not have) so I absolutely don’t want to go the surgical route until we all know more. I feel like I’m doing more research on my condition than my doctors and that is very frustrating. Thank you so much for spreading awareness.
This was the most informative video I have seen so far. I was recently diagnosed with TOS, but it had been suspected as a possible diagnosis since 1986 when I was diagnosed with carpal tunnel syndrome at the age of 16. I have had bilateral carpal tunnel surgery (right side revision once), bilateral cubital tunnel surgery, bilateral de Quervains surgery, bilateral index trigger finger surgery, and most recently C4-C7 cervical disc replacement with swan neck correction. I am dismayed to hear that my neck surgery will cause further difficulty in treating my TOS. My neck was starting to sway to the right, and I was told it was urgent that I have the neck surgery. I’ve also got cervical spondylosis w/o myelopathy or Radiculopathy, cervical Radiculopathy, unspecified inflammatory Spondylopathy cervical region, Dystonia, Occipital Neuralgia, unspecified inflammatory Spondylopathy lumbar region, radiculopathy lumbar region, spondylosis w/o myelopathy or radiculopathy lumbar region, spinal stenosis lumbar region, other disorders of peripheral nervous system, sacroiliitis not elsewhere specified, sacrococcygeal disorders not elsewhere classified, trochanteric bursitis left hip, patellar tilt syndrome in both knees, hips that twist to the left, unstable ankles, had approximately 13 abdominal surgeries, 2 meniscus repairs 1 per knee, and when the need arises I receive TAP injections for the abdominal pain, and lastly fibromyalgia. I started cortisone injections in my lumbar spine in 2013, moving to radio frequency ablation. Eventually I did the same for my neck, and added Botox injections for the Dystonia. I would never take Botox for vanity reasons, but they certainly help for Dystonia. Following my neck surgery, for which I was forced to resign my job over, the pain never quite dissipated. I have failed the ROOS test. I have been unable to go any further as I’m waiting upon disability at this time. Do you have any suggestions for me at this point? I have had several CT scans via the ER that show the discs surrounding those that have been replaced are disintegrating faster than expected. Thank you for your time, and possible interest. Laura Nowak
I had NCS and ROOS test negative, but when I work repetitively with my hands, my left hand is reddening, swelling and I feel it numb. My palm turns blotchy, and my arm is in pain. I have a lot of pain in both of my wrists. I insisted on hand swelling, when explained my symptoms, but the doc did not see it or very slightly, because it comes and goes. I guess my physio treats me for TOS and my trigger points.
This is what my cardiologist thinks I have, but he hasn't been much help other than that. The pain is so blinding when it acts up that I have to stop what I'm doing and hope I'm not dying. The first time it happened was just last year. The occurs at random times, but mostly happens when I'm hunched over and fades faster if I straighten up, which is difficult to do when I'm in that much pain. I'm hoping to get further information, but it doesn't sound like much can be done about it. I would just be happy to know. I notice that it occurs more often when I have Butalbatol or Tylenol.
Tos sounds so similar to what i've been going with but it's more on my backside and the nerve path going into my scapula although I did have some arm tingles and numbness at one point but no loss of strength.
I have been having similar syntomps for months, ive had all kinds of tests and they cant find anything now my doctor thinks its psychological, i am almost in tears with frustration.
I believe I have TOS. I had neck surgery & have a metal plate in my neck 20 years ago, I do repetitive movements everyday at work, my R arm started hurting & weak with numbling & tingling in 7/2024. I felt like I've been loosing muscles on my arms, but thought because I'm 53 so it's normal. I asked if Kaiser can give me an MRI, they said no & gave me physical therapy. The therapy helps, but it never went away. Then I filed workman's comp with work in 8/2024 & they sent me to have nerve test, PT, now acupuncture, I feel it's helping, but it hasn't gone away & the pain is still there. The numbling & tingling went away. I don't know what to do, please help🙏
I forgot to mention that for months ago I had what I thought was a stroke everything went black and I couldn’t move my arm or my hand and then finally the light started coming into my eyes and I was able to move my fingers. I sat down thinking I was having a stroke and later I found out that TOS can mimic stroke. It’s so scary.
Thanks for the great info ...Can someone with inference tell me based on occurance and probability what might be going on in my case. It was a sudden onset when I tossed a tennis ball above my head with my left non racket hand to serve during a tennis match. I uses to surf and play tennis but now in my 50's I only play tennis. After it occured It just felt like a funny bone trigger but a little more sharp and it would reoccur everytime i tried to serve.. so i tried to fight through it by not tossing the ball as high but I escalated its anger and before I know it it waa happening when Id run and swing the racket ...seems to be associated with how i position my head as in looking upward. It was not tgere one minute then when i threw my arm up looking up it would feel like someone just plucked my left side like it was a tightrope. Now, after a week or so i am feeling numb feeling in my thumb and index finger. How it can just happen so suddenly with no prior indication of an issue after 50 years is troubling ... I am a tennis coach and quite worried atm plus I can't afford surgery
Can TOS cause a purplish/ red color all over your arms & face? I've been having pain up & down the sides of my neck, shoulders, arms, armpit & my chest. I also have venous insufficiency and raynauds, atherosclerosis. I had to have a US last week & it said this "Multiphasic waveforms are identified within the left upper extremity at baseline, with the arm positioned at 90 degrees, and with the head turned towards the right and the left." & "There is a dampened waveform when patient's head is turned toward the left." I didn't hear you mention US at all in your presentation. I just had my CTA yesterday. I have Ossification of the posterior longitudinal ligament C5-C6 from bone morphogenic protein that was used off label for my ACDF. I had to have it done twice because the first time my surgeon put the screws into my spinal cord & caused myelomalacia. I am praying I don't have another problem. 🙏
Thank you for this. I’ve been suffering for about eight months with TOS. Do you know any specialist who thinks similarly to you and is qualified like you are in the Los Angeles area? Thank you
1st and 2nd rib fusion is cause of my TOT and i have POTS and worsening autonmic dysfunction. Noone is of any help. Neuro and other specialists cant seem to fix it even though my arm i can hardly raise now amd have severe tingling pain and stuck poature on right side. Hard to breathe and when use right arm it sets off Blood pressure drops, heaviness in body and blackouts. No idea what to do
Hi, sorry to hear so much is going on. You can reach out to us for private health discussion at www.tosmri.com/thoracic-outlet-syndrome-education/contact-us/
@@tosmri thankyou. Im in Australia though is their anyone in Victoria, Melbourne you would know of that is expertise in this area. Financially struggling and nothing so far helps and has been wasted money . Physio, accunpunutre, cupping, massage, etc all useless apart from some slight relief while they massage it
@@beatz3279 Unfortunately, I do not know somebody in Australia. There may be TOS providers in this country that can perform a virtual consult, and we can help you find them through private communications. Thanks!
@@beatz3279 You may not need a consult. But we don't discuss any personal details over the web or on YT. We are very careful to protect privacy, which we can do through our website and a secure health app we use. Sorry for the inconvenience.
No one talks about Parsonage Turners Syndrome. Can you please spread awareness about PTS? RARE and no one can diagnose it except for spine surgeon like yourself. TOS smashes the brachial plexus the same way PTS does.
Thanks, and that's a good suggestion. Usually, the clinical presentation is different, so docs don't confuse the two often. Also, the routing 'brachial plexus' MRI performed by radiologists should be sufficient for Parsonage Turner syndrome, but not for thoracic outlet syndrome. Appreciate the input, and hope you are doing well.
Hi.. I’ve been suffering for about 6 years constant pain I have Eds I now am losing function in both arm pressure in left eye I have developed dupytrens contracture I have so much pain I’m cold all time, my neck burns and itches which I seem to getting one symptom and now more frequently with swelling in left side neck which is starting to go into right side neck.. I’ve also developed a small nodule at end collarbone I’m not sure if this is do with me breaking my collarbone when I was a kid symptom and swelling getting worse I’ve been rush in by ambulance a lot because massive swelling in left side neck that turns blue.. chest pain I’ve been passed around and even vascular surgeon touched it and said not vascular without test I’m suffering so much please could you give me advice my life is impacted badly I’m only 46 I suffer every day I feel no one is listening to me…
This pain is killing me the whole day i feel it and my docter let me go to hospital first mri for my nek, then again another mri nek shoulder they call it inpigment its not true beceause its tintling and dead feeling in my arm fingers i even let things fall out of my hand i did also EMG test.☹☹☹ now they want to give me nerve painkiller
Did you have an Ultrasound at all? All these tests drive me crazy! I wish drs would actually use their instincts & brains instead of always relying on machines. Not everyone fits inside the same box!
I’m in the military and let me tell you how unfamiliar they are with TOS. I have been dealing with my pain and complications for 4 years now before I finally came across a vascular surgeon that was able to possibly diagnose me with NTOS. There is so little I am able to do as an engineer that they are considering discharging me. I have just started undergoing my first round of BoTox injections, however, I haven’t noticed any change. My surgeon is also only familiar with removing the first or cervical rib (which I do not have) so I absolutely don’t want to go the surgical route until we all know more. I feel like I’m doing more research on my condition than my doctors and that is very frustrating. Thank you so much for spreading awareness.
Do you have pain in your scalenes?
@@BustasGirl1 I do what does it mean ? begging for help
Hey man I recommend looking into your wellness nerd "is your pec minor a major problem"
Thank you for your expertise and advise!!! I so badly needed to see this video to stay encouraged and learn more.
This was the most informative video I have seen so far. I was recently diagnosed with TOS, but it had been suspected as a possible diagnosis since 1986 when I was diagnosed with carpal tunnel syndrome at the age of 16. I have had bilateral carpal tunnel surgery (right side revision once), bilateral cubital tunnel surgery, bilateral de Quervains surgery, bilateral index trigger finger surgery, and most recently C4-C7 cervical disc replacement with swan neck correction.
I am dismayed to hear that my neck surgery will cause further difficulty in treating my TOS. My neck was starting to sway to the right, and I was told it was urgent that I have the neck surgery.
I’ve also got cervical spondylosis w/o myelopathy or Radiculopathy, cervical Radiculopathy, unspecified inflammatory Spondylopathy cervical region, Dystonia, Occipital Neuralgia, unspecified inflammatory Spondylopathy lumbar region, radiculopathy lumbar region, spondylosis w/o myelopathy or radiculopathy lumbar region, spinal stenosis lumbar region, other disorders of peripheral nervous system, sacroiliitis not elsewhere specified, sacrococcygeal disorders not elsewhere classified, trochanteric bursitis left hip, patellar tilt syndrome in both knees, hips that twist to the left, unstable ankles, had approximately 13 abdominal surgeries, 2 meniscus repairs 1 per knee, and when the need arises I receive TAP injections for the abdominal pain, and lastly fibromyalgia.
I started cortisone injections in my lumbar spine in 2013, moving to radio frequency ablation. Eventually I did the same for my neck, and added Botox injections for the Dystonia. I would never take Botox for vanity reasons, but they certainly help for Dystonia.
Following my neck surgery, for which I was forced to resign my job over, the pain never quite dissipated. I have failed the ROOS test. I have been unable to go any further as I’m waiting upon disability at this time. Do you have any suggestions for me at this point? I have had several CT scans via the ER that show the discs surrounding those that have been replaced are disintegrating faster than expected. Thank you for your time, and possible interest.
Laura Nowak
Dear Laura, I can only say how much I am sorry you have gone through so much and although the medical doctors have failed you, dont give up!
Thank you for this. There is very little info out there. I was diagnosed with Paget Schrotter.
I had NCS and ROOS test negative, but when I work repetitively with my hands, my left hand is reddening, swelling and I feel it numb. My palm turns blotchy, and my arm is in pain. I have a lot of pain in both of my wrists. I insisted on hand swelling, when explained my symptoms, but the doc did not see it or very slightly, because it comes and goes. I guess my physio treats me for TOS and my trigger points.
Do you have a specialist for TOS in my area? I notice Dr Jenkins is in New York.
Please reach out to us at www.tosmri.com/contact-us/ and we can help you find TOS specialists closest to you.
This is what my cardiologist thinks I have, but he hasn't been much help other than that. The pain is so blinding when it acts up that I have to stop what I'm doing and hope I'm not dying. The first time it happened was just last year. The occurs at random times, but mostly happens when I'm hunched over and fades faster if I straighten up, which is difficult to do when I'm in that much pain. I'm hoping to get further information, but it doesn't sound like much can be done about it. I would just be happy to know. I notice that it occurs more often when I have Butalbatol or Tylenol.
@Remmy-Did you find a TOS specialist in your area? Its not so much their medical specialty, but their interest in TOS that is important.
Tos sounds so similar to what i've been going with but it's more on my backside and the nerve path going into my scapula although I did have some arm tingles and numbness at one point but no loss of strength.
I have been having similar syntomps for months, ive had all kinds of tests and they cant find anything now my doctor thinks its psychological, i am almost in tears with frustration.
Would you kindly reach out to us at your convenience? www.tosmri.com/contact-us/
I believe I have TOS. I had neck surgery & have a metal plate in my neck 20 years ago, I do repetitive movements everyday at work, my R arm started hurting & weak with numbling & tingling in 7/2024. I felt like I've been loosing muscles on my arms, but thought because I'm 53 so it's normal. I asked if Kaiser can give me an MRI, they said no & gave me physical therapy. The therapy helps, but it never went away. Then I filed workman's comp with work in 8/2024 & they sent me to have nerve test, PT, now acupuncture, I feel it's helping, but it hasn't gone away & the pain is still there. The numbling & tingling went away. I don't know what to do, please help🙏
Hi, and sorry to hear about your ongoing challenges. We are happy to discuss in detail, please reach out to us via www.tosmri.com/contact-us/
I forgot to mention that for months ago I had what I thought was a stroke everything went black and I couldn’t move my arm or my hand and then finally the light started coming into my eyes and I was able to move my fingers. I sat down thinking I was having a stroke and later I found out that TOS can mimic stroke. It’s so scary.
Thanks for the great info ...Can someone with inference tell me based on occurance and probability what might be going on in my case. It was a sudden onset when I tossed a tennis ball above my head with my left non racket hand to serve during a tennis match. I uses to surf and play tennis but now in my 50's I only play tennis. After it occured It just felt like a funny bone trigger but a little more sharp and it would reoccur everytime i tried to serve.. so i tried to fight through it by not tossing the ball as high but I escalated its anger and before I know it it waa happening when Id run and swing the racket ...seems to be associated with how i position my head as in looking upward. It was not tgere one minute then when i threw my arm up looking up it would feel like someone just plucked my left side like it was a tightrope. Now, after a week or so i am feeling numb feeling in my thumb and index finger. How it can just happen so suddenly with no prior indication of an issue after 50 years is troubling ... I am a tennis coach and quite worried atm plus I can't afford surgery
Sorry to hear you aren't up to par. Feel free to reach out to us at www.tosmri.com/contact-us/ so we can help.
Can't even describe what I'm going through....
Same .very disabling.10 month struggling already.
Can TOS cause a purplish/ red color all over your arms & face? I've been having pain up & down the sides of my neck, shoulders, arms, armpit & my chest. I also have venous insufficiency and raynauds, atherosclerosis. I had to have a US last week & it said this "Multiphasic waveforms are identified within the left upper extremity at baseline, with the
arm positioned at 90 degrees, and with the head turned towards the right and the left." & "There is a dampened waveform when patient's head is turned toward the left."
I didn't hear you mention US at all in your presentation. I just had my CTA yesterday. I have Ossification of the posterior longitudinal ligament C5-C6 from bone morphogenic protein that was used off label for my ACDF. I had to have it done twice because the first time my surgeon put the screws into my spinal cord & caused myelomalacia. I am praying I don't have another problem. 🙏
is it possible that tos could cause bradcardia or other abnormal heart rythms due to nerve signal interuptions from the compressed nerve bundle
Question to the doctor and speaker: Could TOS (left side) cause headaches on the left side of head?
Thank you for this. I’ve been suffering for about eight months with TOS. Do you know any specialist who thinks similarly to you and is qualified like you are in the Los Angeles area? Thank you
How do I get help from you? I’m positive I either have VTOS or May Thurner. Not getting help here and I’m afraid I’m going to die
1st and 2nd rib fusion is cause of my TOT and i have POTS and worsening autonmic dysfunction. Noone is of any help. Neuro and other specialists cant seem to fix it even though my arm i can hardly raise now amd have severe tingling pain and stuck poature on right side. Hard to breathe and when use right arm it sets off Blood pressure drops, heaviness in body and blackouts. No idea what to do
Hi, sorry to hear so much is going on. You can reach out to us for private health discussion at www.tosmri.com/thoracic-outlet-syndrome-education/contact-us/
@@tosmri thankyou. Im in Australia though is their anyone in Victoria, Melbourne you would know of that is expertise in this area. Financially struggling and nothing so far helps and has been wasted money . Physio, accunpunutre, cupping, massage, etc all useless apart from some slight relief while they massage it
@@beatz3279 Unfortunately, I do not know somebody in Australia. There may be TOS providers in this country that can perform a virtual consult, and we can help you find them through private communications. Thanks!
@@tosmri no worries thankyou. What is cost for a consult
@@beatz3279 You may not need a consult. But we don't discuss any personal details over the web or on YT. We are very careful to protect privacy, which we can do through our website and a secure health app we use. Sorry for the inconvenience.
No one talks about Parsonage Turners Syndrome. Can you please spread awareness about PTS? RARE and no one can diagnose it except for spine surgeon like yourself. TOS smashes the brachial plexus the same way PTS does.
Thanks, and that's a good suggestion. Usually, the clinical presentation is different, so docs don't confuse the two often. Also, the routing 'brachial plexus' MRI performed by radiologists should be sufficient for Parsonage Turner syndrome, but not for thoracic outlet syndrome. Appreciate the input, and hope you are doing well.
Hi.. I’ve been suffering for about 6 years constant pain I have Eds I now am losing function in both arm pressure in left eye I have developed dupytrens contracture I have so much pain I’m cold all time, my neck burns and itches which I seem to getting one symptom and now more frequently with swelling in left side neck which is starting to go into right side neck.. I’ve also developed a small nodule at end collarbone I’m not sure if this is do with me breaking my collarbone when I was a kid symptom and swelling getting worse I’ve been rush in by ambulance a lot because massive swelling in left side neck that turns blue.. chest pain I’ve been passed around and even vascular surgeon touched it and said not vascular without test I’m suffering so much please could you give me advice my life is impacted badly I’m only 46 I suffer every day I feel no one is listening to me…
This pain is killing me the whole day i feel it and my docter let me go to hospital first mri for my nek, then again another mri nek shoulder they call it inpigment its not true beceause its tintling and dead feeling in my arm fingers i even let things fall out of my hand i did also EMG test.☹☹☹ now they want to give me nerve painkiller
Did you have an Ultrasound at all? All these tests drive me crazy! I wish drs would actually use their instincts & brains instead of always relying on machines. Not everyone fits inside the same box!
hows it going now ?