[TimeFish576]

First post here - just turned 30 male

Sorry for the long post. I've been researching TOS and am getting confused about some of my symptoms. I found this forum and hope that I can be helped in the right direction. Reading some of your posts I'm glad my neurologist told me to consider TOS because years of waiting to find out whats wrong would kill me.

Main story below, short version first:
My nuerologist thinks it may be possible that I have TOS. After 2 xrays and 2 MRIs everything showed to be normal.

• Was experience numbing/tingling/heavy sensations (like falling asleep) mainly on right side of body

• symptoms became very bad for a few days

• no pain during symptoms

• was doing shoulder exercises to fix improve possible shoulder impingement/buritis (left shoulder)(PT not consulted). Think that this may have started or contributed to condition

• symptoms improved but hands, palms turned red, sometimes sore (don't think its raynauds)

• experienced tightness in chest near heart, felt like heart was beating harder, feeling lasted a week or so and is normal now

• during chest tightness also felt tension in left temple. still sometimes.

• some pain in left hand/fingers after turning red.

• think it might be more vascular than neuro

• feel sometimes like shoulders are weaker but no apparent strength loss when tested

• grip in hands, mainly left, feels lessened. tend to fumble and drop things a bit more (not ruling out this is in my head)
  

Questions:
Does this sound like TOS?
If so is this a mild case and could it go away on its own?
Does it sound more vascular than neurological?
Should I get into physical therapy?
Why did it move from the right side to the left?
Could my bad left shoulder have been the cause of all this?
Can a pinched nerve or vein/artery in left shoulder cause sensations all over?


My symptoms that brought me to the doctor were for about a week prior I started experiencing a numbing/tingling/heavy feeling on the right side of my body. These symptoms came suddenly (started out light but got worse) and I had no trauma. What I was doing that I think may have brought this on (it may have been present and exacerbated by this) was shoulder exercises to fix what I think (thought) is or was impingement or buritis in my left shoulder. They included external and internal rotations, face pulls, cable rows, and shoulder dislocations. These were done with a band so it was light resistance. After my initial doctor visit, that night the symptoms became much worse. I went about 3 days with little to no sleep because I couldn't lay down without making the symptoms worse. Maybe anxiety made it worse I don't know. Luckily things improved greatly a few days later to where I was still experiencing numbness some in the face (teeth felt like I had novacane) but mostly heaviness in my right arm and leg. Over the next few weeks I still experienced some of the symptoms as they came and went but things were better. Not sure if it is related or not but at some point I leaned on my right leg for a while and that knee felt very strange for a while (like the leg would get tired easily, knee and below only). It is now better. I've done some exercise to get blood flowing and it seems fine (so does everything else after light cardio exercise). During all the symptoms I never seemed to lose strength.
Then about three weeks ago I went to my first neurologist visit. I'm not sure he believed my symptoms at first but thought I was fine and just had a pinched nerve maybe. Recommended I get a second MRI and come back in 2 weeks. It was after this that my hands (palms mainly also underside of toes) turned red. It didn't seem normal but it had just gotten cold and I was hoping that was it. Also during this time the symptoms moved to the left upper part of my body (I still experience it in the face sometimes). Three weeks later they are still red and slightly sore (some pain in the left hand, the joints of the middle and ring finger). It was around that time that I started waking up to the ring and pinkie fingers being asleep. Unlike previous symptoms if I started to move the fingers around the feeling would go away.
The MRI (cervical spine) was normal and he mentioned to consider TOS. If in a month the symptoms don't improve or get worse I would get into physical therapy. At the moment my main symptoms are the red hands, waking up ring and pinkie fallen asleep, slight loss of control in hands (fumbling, dropping things (may be just in my head)), slight pain in left hand sometimes. Also the left arm's pulse feels stronger. Like I can feel it more. Also the veins seem to be a bit more visible but I might be imagining it (im right handed so the left should be weaker). I probably going to call earlier to get into physical therapy because I want my shoulder looked at also (if its not related).

Any opinions, experiences, recommendations, please tell me. Thanks

[Kitt]

Welcome TimeFish576.

[Nellyzen]

I would recommend that you go see a thoracic surgeon right away and they can order MRA's and see if you have arterial compression. No point in wasting time, if you do have vascular and arterial issues you need to have surgery.

[TimeFish576]

I'll be calling my neurologist tomorrow to move things along. For insurance reasons I want as much as possible done this year.

Right now my main symptoms are red hands, tightness in the left hand but full motion, left arm veins seem to be popping out more than they should, inner bicep pain sometimes, shoulder pain with certain movements, and a somewhat persistent tension headache on the left near temple. Hopefully it's just a pinched nerve coupled with stress but I want to cover everything.

[Sea Pines 50]

Happy you've found us, but sorry for the reasons why (if that makes any sense). I'm going to try to answer some of your questions, if I can. Keep in mind, I'm no doctor… and any so-called 'advice' you may glean from my post may be worth exactly what you've paid for it!

Your symptoms (sx) do sound to me like they could be coming from TOS. The fact that you describe them as "mild," to me, points more to them being more vascular (either arterial or venous) in nature (i.e., VTOS) than neurogenic (NTOS), rather than to being something that "could just go away on its own…," unfortunately. (I'm just talking about pain levels here, because of course, VTOS is every bit as serious a malady as is NTOS.)

I do think physical therapy (PT) sounds like a good idea. But, you must be careful! It can be difficult to find a physical therapist who honestly knows how to treat (tx) TOS. Traditional, 'no pain, no gain' physical therapy not only does not work with TOSers, it can make you way worse! For example, no strengthening exercises should be introduced until certain upper body postural and respiratory dysfunction, muscle imbalances, etc. are addressed, and if something causes your pain levels to go up or other sx to flare, you should not do it, period. This means no Theraband exercises, weights, rowing/UBM, etc., at least in the beginning. Try using the 'Search This Forum' function to pull up prior threads and posts on TOS modalities (like Botox injections into the scalene and pec minor muscles), the best type of PT, bodyworkers, chiropractic, etc.

That being said, I don't believe anything you were doing with your "bad" shoulder, in terms of exercises and stuff, was the cause of all of the sx you are having. Assuming you have TOS, you would be amazed at the number, variety and severity of sx which compression in the brachial plexus can cause in the human body! Your case may be like my own, in that it had what is referred to as an "insidious" onset. It happens. The thoracic outlet is a tight space, within which several cervical nerve roots, the first thoracic nerve root and the subclavian blood vessels compete for room to flow through, to the arm. Add in an anatomic anomaly or two, and you've got yourself a painful picture! So, the focus you were placing on that shoulder may have triggered the other sx, but there had to have been trouble a'brewin' in there already; it was just a matter of time before hell broke loose…

Be thankful you do not have a lot of pain, that is a blessing! So many of your sx scream classic TOS: arms feeling heavy or weak, numbness and tingling in 4th & 5th fingers, loss of grip strength, fumbling/dropping stuff, color changes in palms (mine turn bright red, too!), high pulse rate, insomnia/trouble finding comfortable position laying down, etc., etc. You do have nerve pain sx as well as vascular, by the way…

It is possible to have TOS bilaterally, for extra fun. Depending upon what part of the country you live in, we may be able to help direct you to a vascular surgeon or other top TOS doc to get you diagnosed properly (doesn't mean you have to sign up for surgery right away, by any means!). They might want you to get some tests done, to confirm where the compression is, exactly. Also most likely to run a differential diagnosis, to rule out other pain syndromes TOS can closely mimic sometimes (like shoulder tendonitis, for example).

The good news is, if it is VTOS, you have a much better shot at a full recovery, as it is more of a simple mechanical problem than is NTOS. So many factors to consider, and every TOSer's case is different. There is still quite a bit of controversy in the medical world about TOS and how best to tx it… There is a ton of useful information captured in the sticky threads at the top of the main page of this forum, if you'd like to do some research.

Please keep posting here, to let us know how you're doing, OK? If you have any questions or concerns we'd be happy to help you if we can.

Take care,

Alison

[TimeFish576]

Originally Posted by Sea Pines 50

Happy you've found us, but sorry for the reasons why (if that makes any sense). I'm going to try to answer some of your questions, if I can. Keep in mind, I'm no doctor… and any so-called 'advice' you may glean from my post may be worth exactly what you've paid for it!

Your symptoms (sx) do sound to me like they could be coming from TOS. The fact that you describe them as "mild," to me, points more to them being more vascular (either arterial or venous) in nature (i.e., VTOS) than neurogenic (NTOS), than to being something that "could just go away on its own…," unfortunately. (I'm just talking about pain levels here, because of course, VTOS is every bit as serious a malady as is NTOS.)

I do think physical therapy (PT) sounds like a good idea. But you must be careful! It can be difficult to find a physical therapist who honestly knows how to treat (tx) TOS. Traditional, 'no pain, no gain' physical therapy not only does not work with TOSers, it can make you way worse! For example, no strengthening exercises should be introduced until certain upper body postural and respiratory dysfunction, muscle imbalances, etc. are addressed, and if something causes your pain levels to go up or other sx to flare, you should not do it, period. Try using the 'Search This Forum' function to pull up prior threads and posts on TOS modalities (like Botox injections into the scalene and pec minor muscles), the best type of PT, bodyworkers, chiropractic, etc.

That being said, I don't believe anything you were doing with your "bad" shoulder, in terms of exercises and stuff, was the cause of all of the sx you are having. Assuming you have TOS, you would be amazed at the number, variety and severity of sx which compression in the brachial plexus can cause in the human body! Your case may be like my own, in that it had what is referred to as an "insidious" onset. It happens. The thoracic outlet is a tight space, into which several cervical nerve roots, the first thoracic nerve root and the subclavian blood vessels compete for room to flow through, to the arm. Add in an anatomic anomaly or two, and you've got yourself a painful picture! So, the focus you were placing on that shoulder may have triggered the other sx, but there had to have been trouble a'brewin' in there already; it was just a matter of time before hell broke loose…

Be thankful you do not have a lot of pain, that is a blessing! So many of your sx scream classic TOS: arms feeling heavy or weak, numbness and tingling in 4th & 5th fingers, loss of grip strength, fumbling/dropping stuff, color changes in palms (mine turn bright red, too!), high pulse rate, insomnia/trouble finding comfortable position laying down, etc., etc.

It is possible to have TOS bilaterally, for extra fun. Depending upon what part of the country you live in, we may be able to help direct you to a vascular surgeon or other top TOS doc to get you diagnosed properly (doesn't mean you have to sign up for surgery right away!). They might want you to get some tests done, to confirm where the compression is, exactly. Also most likely to run a differential diagnosis, to rule out other pain syndromes TOS can closely mimic sometimes (like shoulder tendonitis, for example).

The good news is, if it is VTOS, you have a much better shot at a full recovery, as it is more of a simple mechanical problem than is NTOS. So many factors to consider, and every TOSer's case is different. There is still quite a bit of controversy in the medical world about TOS and how best to tx it… There is a ton of useful information captured in the sticky threads at the top of the main page of this forum, if you'd like to do some research.

Please keep posting here, to let us know how you're doing, OK? If you have any questions or concerns we'd be happy to help you if we can.

Take care,

Alison

Thanks for the great reply (although I'm bit disappointed to hear that you think it might be TOS, I've kinda been leaning toward pinched nerves again). I'm in the Philadelphia area. I looked through the forum and saw a list of doctors/surgeons and didn't see any around me. My neuro said the next test would be an EMG, then physical therapy.

Today was actually a bit of a flare up I guess of whatever is going on. The tension in my chest returned (left side). The tips of my fingers, seems more so on the right, are tingly, my left arm around the elbow especially aches and veins still popping out more then usual, and hands are still red. One thing that went away was my tension headache. A lot of these symptoms I would have just ignored before the numbness/tingling came but I can see how this is a confusing condition.

Also did some light weightlifting and didn't notice any side effects (other than possibly causing my left arm to ache but that came a couple days later). Also have done light cardio and feel mostly like usual.

[Jomar]

TOS often has a "delayed pain" effect...
Sometimes shows up hours, day or so after the activity...

One reason it is tricky to figure what you can safely do, you have learn by trial and error unfortunately.. It's such a case by case thing.

But now you know what you did caused a bit of a flare ,it might be good to make a timeline or journal and note symptoms and activities as they happen.

[Sea Pines 50]

PA is a great place to live if you have TOS! (And I don't know if you do, like I said… no one ever accused me of being a doctor [nor, of playing one on tv]!)

The best guy for you to see for the EMG/NCV studies is Dr. Scott Freid, at the Upper Extremity Institute in Blue Bell. Not sure how far that is from your city, but he's worth the drive IMHO - it's your health we're talking about here, after all. His website is: www.nervepain.com.

In addition to the Drs. and PTs sticky thread, sometimes you can pull up more current info on that sort of stuff by using the 'Search This Forum' function, located in the upper righthand portion of your screen.

We do tend to talk about our TOS docs and other healthcare providers on this forum; also any other particular topic you've an interest in (venogram, nerve glides, diaphragmatic breathing, for starters), just type in some key words where you're prompted and… voila! Collective wisdom, at your tingling fingertips!

By 'de way, don't be surprised if the electrodiagnostic studies come back 'normal'. That is not at all unusual with TOS, because it tends to attack the smaller sensory nerves first, and the EMGs and NCVs are more for looking for irregularities in the (larger) motor nerve functions. So, a negative result won't mean that you don't have TOS, necessarily… Still, it's an important test to undergo in the process of getting diagnosed.

Dr. Freid can probably also hook you up with some other good people to see for whatever along the way in your TOS journey (PT, pain management, vascular surgery, etc.), if and as needed… I've heard nothing but good things about him.

Good luck!

Alison

[Nellyzen]

Physical therapy is very bad for arterial and venous TOS as it causes more damage. I had surgery on both sides and never went to therapy after the surgeries. I did do PT before I knew I had such severe arterial and venous compression because I was told I had NTOS and didn't know any better at the time.

[TimeFish576]

I have an EMG schedule (not with Fried though yet). Unfortunately I have to wait until the end of December. Still hoping for just a pinched nerve or herniated disc. I know that if it is it still maybe TOS but at least it would be something tangible. Reading more about pinched nerves in the neck I found that most of my symptoms can be attributed to that, man nerves are weird.

I'll update with the results when I get them.

My symptoms ATM are annoying chest discomfort, red hands, weaker than usual grip and fumbling things a bit, and a new one where my right foot gets colder than the left (no pain). Tried some more exercise and nothing noticeable except maybe the chest tension.