[MelissaLH]

Hello everyone!

After reading through some of the responses to my intro post, I'm wondering what the are symptoms that people have that differ between vascular and neurogenic TOS? I do understand that the nerves travel through the same area as the blood vessels, and as my surgeon explained, evidence of arterial or venous compression can be strong support of there being nerve compression going along with it (for those of us with negative EMG's). I've read all of the symptoms listed on various web sites explaining the syndrome, but since my arm doesn't turn blue or anything like that, it's harder for me to distinguish between arterial and neurogenic (or do I even need to at this point?).

A Doppler ultrasound was used to show arterial and venous slowing of flow with my arms at varying degrees and actual stoppage of flow at 180°. During the ultrasound, the little wand lightly pressed into my collarbone combined with my moving my arms up and down brought on a lot of my symptoms (not all at once, but flashes of these symptoms as my arms changed position):

Lots of tingling that goes down the ulnar side of my forearm into my hand, burning pain from my wrist or forearm into my palm, throbbing pain in various fingers (usually around a knuckle), throbbing pain into the back of my wrist by my thumb as well as my forearm, pain into my armpits, pain at elbows, and varying degrees of hand numbness with mild swelling, red discoloration and warmth, especially at 180°, which took some time to dissipate. After the ultrasound and then the physical exam following it, I felt a bit beat up and my arm symptoms were flared up for the next couple days. The symptoms that were not reproduced included the fact that I cannot wear anything binding, such as elastic sleeves like those found on hoodies, as they make my wrists and hands feel like they will explode or something. Also, I have grip weakness, and wrist and hand (finger) pain when typing.

I have had a couple times when my hand has suddenly turned a dark color and the veins have popped out around it painfully, but that is more of a rarity. My posture is excellent, however I have a long slender neck, those cervical ribs, and the added "benefit" of having a problem with cervical muscle spasm since that awful car accident and the whiplash. I also seem to have tight pectoral muscles, which are worked on (aka massaged) in physical therapy. Okay, any responses would be greatly valued!

Melissa

[Jomar]

This is a something I wanted to add to the other thread but I'll add it here.
a few of our saved posts-
http://neurotalk.psychcentral.com/sh...2&postcount=20
http://neurotalk.psychcentral.com/sh...5&postcount=21

http://neurotalk.psychcentral.com/sh...ad.php?t=12415

this chart shows a the TOS cause/effect symptoms - it helped me to understand it better-
http://tos-syndrome.com/newpage12.htm

My chiro did say that the symptoms will cross over too, because the messed up nerves send the signals to muscles and they will do weird things, also the messed up blood flow will affect the muscles also.
{ just a short breakdown of what he said- it was a couple years ago when he said that}
***
[Lots of tingling that goes down the ulnar side of my forearm into my hand, burning pain from my wrist or forearm into my palm, throbbing pain in various fingers (usually around a knuckle), throbbing pain into the back of my wrist by my thumb as well as my forearm, pain into my armpits, pain at elbows, and varying degrees of hand numbness with mild swelling, red discoloration and warmth, especially at 180°, which took some time to dissipate. After the ultrasound and then the physical exam following it, I felt a bit beat up and my arm symptoms were flared up for the next couple days. The symptoms that were not reproduced included the fact that I cannot wear anything binding, such as elastic sleeves like those found on hoodies, as they make my wrists and hands feel like they will explode or something. Also, I have grip weakness, and wrist and hand (finger) pain when typing.]

the weakness I am pretty sure is nerve related
the slight swelling is probably venous
{i had to stop wearing tight sleeves and watch - I only had slight swelling, but it really bothered me}

when i raise my hands/arm they will go white & cold from the blood flow stopping and then flush pink & warm as blood returns when I lower them.

[johannakat]

If your neck muscles are all swollen and spasming- It is likely they are compressing the nerves.

If you have numbness and tingling that persists when your arms are lowered, or if it follows any nerve pattern (like ring and pinky finger for ulnar nerve) i think that is a pretty good indicator that you have nerve compression.

There are also some spcific tests your neuro can do

1. finger temperature If you hands and fingers are actually cold, circulation problem. If they FEEL cold but they are actually warm- nerve compression problem.

2. Neurological tresting where they look for numbness, varying sensitivity from hand to hand with something pricky (like a needle or a broken toothpick) or weakness (like when you hold your fingers spread out and they try to push them together while you resist) can be used. Even small findings can indicate significant nerve compression in my own personal experience. My nerve was wrapped around the rib adn totally out of control swollen but i just barely failed some of the neuro tests. I think part of that is that i am pretty storng to begin with, so when they rate my grip strength or finger resistance compared to the "average" woman it is pretty good, but I notice significant degredation.

Also, clumsiness, inability to grip jar lids, keys or other small items- screams nerve compression.

Actually, i think wrist pain also it a nerve issue. Sharon butler writes that nerve compression in the armpits and lats whows up as wrist pain and that if your have burning wrist pain (i have a lot fo this) that you shoudl stretch those two areas.


If you have bulgy-popping veins like you described, i believe that is the kind of veinous symtopms that are dangerous and should be taken care of asap.

the other symptoms i talked about above, though, I am pretty sure are all nerve type issues. THe one person I know who had veinous troubles only had almost no apin associated with the condiiton and recovered very easily from surgery. I think in general others who have come to this board with only veinous or arterial symtoms are a lot the same-MUCH MUCH less pain.

hoe this is somewhat helpful

Johanna

PS. I am obviously not a doctor....!

[withmore]

When my left arm acts up, I get aching in my middle finger and thumb and my thenar area turns bluish...and the veins bulge from the forearm up. It's not a daily thing though. It depends on what I've done the morning of to aggravate it. I thought it was because my hands were cold all the time until I came here. Venous it what I was told by one, the other neurogenic....This is new to me as well... diagnosis is different form each specilaist yet they all want to do surgery with out ANY testing. I'm heading to Denver next month to get the true Hollywood story!!! Too much CYA around here they all golf together.....

My workers comp atty told me the other day that he uses my case as an example of why he doesn't believe Dr's....funny coming form an attorney. He's heard of the Doc I'm going to and he knows I'll get what I need there.

[johannakat]

well, as i understnad it, the reason a first rib resection is used for TOS so often is precisely because it can address many many sources of compression with one procedure.

I did an awful lot of reading and question asking, and drawing with different surgeons before i finally became comfortable with this idea....

even the best doctors don't neccessarily understand all of it. I had things i liked and agreed with and things i didn't like or agree with for each of the 5 surgeons i talked to before making a surgery decision. Also, none of them really get along with each other or agree with the others' approaches. It is pretty weird, actually.

Johanna

[MelissaLH]

Originally Posted by johannakat

even the best doctors don't neccessarily understand all of it. I had things i liked and agreed with and things i didn't like or agree with for each of the 5 surgeons i talked to before making a surgery decision. Also, none of them really get along with each other or agree with the others' approaches. It is pretty weird, actually.

Johanna

Apparently that means there are definitely more than one way for TOS surgery to be performed! Yikes, I know there are newer techniques in the research literature and mentioned on different surgeons web sites, but it sounds like there's a lot of resistance, division, and a bit of ego there as well?

As for my original question, it sounds as though I have a mixture of symptoms, which of course makes sense considering the thoracic area. Part of me wishes that it was just nerve pain and not arterial so that I wouldn't have to consider surgery so soon, yet often my sharp stabs of pain throb with my heart beat before dissipating (luckily, I'm not someone who is in constant pain, only with use and certain movements).

Off to do more reading! Thank you everyone!

[johannakat]

Good luck on your reading...

Don't misunderstand me, though.....they don't agree and yet they do the same basic surgery because the procedure is so versatile...that is what makes it so crazy

whenever you come up with your questions...go ahead and post them, k? lots of people have opinions that can chime in with things you may not have thought of yet- then you can come to your own conclusions faster.

There is a wealth of experience on this board....!

Johanna

[rad351]

me myself show a lot of the same symptoms but have baffled my doctors as my history is as follows :
40 yr male , good shape,good health
i was injured at work while closing a huge comercial door( i work in a freezer at -40) it failed to close and jarred my left arm , causing my arm to pop and a sudden pain around my scapula and spine shortly after that my left arm went purple and blue with bright pink spots , since this time ever time my arm is lowered below heart level or by my side it will go numb and heavey , my veins will pop out and my entire arm will turn purple also if i leave it by my side it will continue to change color and swell, it will feel like a half empty bottle of water swishing about when i move my hand really weird felling this has been going on every day for 3 months now each and every time i leave my arm by my side for any period of time is this a form of tos or something else ?????