I was recently diagnosed with TOS and feel blessed that the doctors discovered it so soon -- only after a couple of weeks of numbness and pain! My heart goes out to all of you that it took months/years to be diagnosed. It started in the fall of 2009. My left ring finger kept going numb and my legs started to go out from underneath me, causing me to fall -- has anyone experienced this?

June 1st I received a tetanus shot (it had been awhile). I had normal pain that happens with a shot, and then a couple of days later my hand started going numb and 2 lymph-nodes grew above my left clavicle -- I could actually see one of them it was so big! I was somewhat concerned at this point but decided to sit on it for a few days. A week after the shot, my arm started to swell and there was a large red spot with red veins coming out of my arm at the injection sight (didn't hurt). I figured it was an infection and went to Urgent care. It was in fact an arm infection, and I was told that's why the lymph-nodes were so swollen. After a week of being on 2000mg of Keflex, I was getting worse. Strange enough, if I even took a sip of alcohol, the pain would start at my left ear and jaw and travel down to my shoulder, arm, and hand. That's when I started getting cold sensations in my shoulder and hand, and my hand would turn blueish. Anyone experience pain caused by alcohol??

I went to see my Dr and he was very concerned. He checked my CBC's and sent me in for an EMG the following day, along with an ultrasound of my nodes. Both my primary and the EMG specialist diagnosed me separately with TOS -- guess they didn't like that my pulse stopped when I turned my head to the left. My Dr wanted me to start physical therapy, after cancer was ruled out. My pain has become almost unbearable -- it's hard to focus. I was sent in to have an MRI done this week. Little did I know that my doc scheduled me for a shoulder and bronchial MRI. The technician running the test said that she had never had a request for this test -- and after 20yrs working with MRI's! She basically told me that they wouldn't find anything. But surprise(!), after 2hrs in the MRI machine (ugh) they discovered that my bronchial plexus wasn't normal and that there is narrowing of my subclavian artery.

My doc scheduled me to see a vascular surgeon on July 6th. Until then, he wants me to go to physical therapy and get other tests done, one being an Angiogram (?). The other concern is that there's numbness and pain on the left side of my head, ear, jaw, and strangely enough, my gums. Not sure this is normal for TOS? A Dr friend of mine said that the brain is also connected to the subclavian artery and would be worth checking out.

I'm writing because I'm scared. There's no explanation as to why this has come about -- the doctor thinks it may be because I'm small and there's just not enough room in that area. Hmm. I'm nervous to hear what the surgeon has to say. Does anyone know what kind of surgery is normally done for TOS with no previous trauma or because of a rib or mass? Any help would be great! I know it's hard to determine what's going to happen at this point. I'm just afraid how this is going to effect my life -- I'm a professional flutist and work with Special Ed kids that sometimes need to be restrained.

Sorry this is so long! It feels good to get it out. It's hard to get support when people don't even know what TOS is.

I don't want to alarm you, and I have little experience with TOS, but your question--- Pain when you consume alcohol--

That I have heard about. Lymphoma can cause this, and in the early stages, is hard to diagnose. Swollen lymph nodes + pain with alcohol, should be checked out. There could be more than one thing going on with you. I believe only a biopsy can confirm this.

Thank you for your reply and insight. I have been wondering about the nodes and head, and would like to have additional tests done before jumping into surgery. Do you know if biopsies are typically better than ultrasounds? I do know that when I went in for the MRI, aside from the TOS, they were also looking for a "mass" -- I'm just not sure if an MRI would show one if it's there.

I just wish I had more answers and could wrap my head around all of this. Great news is that my primary has been informative, concerned, and on top of things. I don't think I've ever had a doctor move so fast and actually call me to "check up" on how I'm doing. At least I know he's listening. I'll let him know that I'd like a biopsy of the nodes.

Thanks again!

Hi Tracy,

They should do enough testing/imaging to find out what exactly is causing the blockage on the artery before any surgery.

It could be the scalene muscles, collar bone, top rib, bone or ligament anomalies.
So depending on what the cause is determines where & what the surgery would be.

We have a testing thread that a member put together for TOS.
http://neurotalk.psychcentral.com/thread117405.html

So you had the TOS diagnosis before the shot and it got worse after the shot?


We had one member that got TOS from a flu shot, I don't recall how it came about but she eventually won the law suit, after many yrs , she also developed RSD after a time.


Bee sure to check out our sticky threads above the main list {they have a green circle icon w/ arrow}

Thank you for the link. It was very helpful to read. I've literally been going crazy because of pain and tests and more unknowns...

As far as the tetanus shot, I was given the shot before the TOS symptoms really started -- I felt good for a couple days after the injection. My left ring has been going numb on and off since last fall, but I'm celiac and thought it could be a result of that (celiac does weird things sometimes!). I've also been falling and running into things for a while, but the docs couldn't figure it out. So back to the tetanus... a couple of days after getting the shot, my ring finger started acting up constantly, the left side of my jaw hurt and I developed swollen nodes over my clavicle (still there). It wasn't until a week after later that my arm got infected. Still funny that part of my arm didn't even hurt! I went straight to urgent care, and by that time my shoulder, forearm and hand hurt beyond belief. My hand was a little swollen, tingly, numb, and an abnormal color. By abnormal color, I mean, it just didn't look the same as my right (a flute student of mine pointed out my weird hand just last week). The Urgent Care Dr said all my symptoms were because of the infection, but that it was "odd" the injection came on a week after the shot (I guess it normally starts to react instantly) and that they must have "hit" a nerve when injecting me. It's all been down hill since... I didn't even think it was possible for TOS to be caused by a shot. Something to think about...

I'm just hoping I start to get better and stop getting worse. Yesterday was so bad, that when I got home from work, I was having a hard time loading my dishwasher and couldn't open a bottle of seltzer water. That's when I learned that tupperware can break (and really break). Who knew? Apparently throwing it will do the trick. I think that was the biggest temper tantrum I've thrown since I was a kid. It felt great to get my frustration out for a moment! I'm just soo tired and can't get rid of this damn pain no matter what I try! I'm also having a hard time getting support from the people in my life. Just don't think they get it.

Anyway, I did go to physical therapy for the first time today. The therapist was great and said that I would most likely have to get surgery but that I definitely needed more tests (as you and the link you sent suggested). I agree and want to be cautious and informed as possible. The therapist does like that they are going to do an angioplasm. He seemed to think that my cervical rib was causing the problems but said that it would have shown on the MRI (it didn't). He also wants me to rule out cancer completely (I thought it was interesting that he brought that up). I'm just glad he actually said the word "cancer" and didn't try to be so polite about it. I really don't think cancer is involved, but it's hard to know I suppose. Any other suggestions on tests that I should run by my primary doc and/or surgeon?

I'm going in to have my breasts checked tomorrow (my primary suggested this) and am going to the surgeon for the first time on Tuesday. Again, I don't know how so many people have gone through this for so many years without knowing. It's admirable how hard people fight and the success it brings! At this point, I'm just trying to stay sane, positive, and am doing my best to survive on no sleep and trying to get past the pain.

For some reason, that last sentence made me think about my seatbelt. Even my seatbelt is driving me crazy it hurts so bad sometimes. Wow. Obvious that I'm frustrated??

One more thing... is it normal to not recall doing things (not because of pain pills)? For example, I lost a GF waffle I was eating the other day. Didn't remember eating it but couldn't find it (I even looked in the trash!), so I assumed I ate it -- 5hrs later I found it in the microwave with one bite taken out of it. Many other stories like that... Exhaustion maybe??

Thanks again for your help! I'm so happy that I came across this site!!

About the brain fog.. that's what we call it.

Mine was so bad for awhile that I thought I had ADD & Alzheimer's all of a sudden. Plus my vision was blurry at times, and had dizzy/vertigo spells too.
I put wrong things in the wrong places a lot back then.

And I wasn't on anything but Lipitor at the time.. I think some of those feelings might have been from the Lipitor but not all of my symptoms.
I know I had the vertebral artery symptoms as they went away after some good chiro sessions. { http://www.tos-syndrome.com/old1/newpage12.htm }

On the injection part I'll see if I can locate beth's posts, she was the one who got TOS and then RSD from a shot.
She hasn't posted here for awhile.

here it is -
beth - posts listing - http://neurotalk.psychcentral.com/se...g_searchinfo=1
just in case the link doesn't work here is her profile page where you can find her posts also.
http://neurotalk.psychcentral.com/member.php?u=403

An MRI will pick up masses and they can even narrow down the type of cells involved in an MRI but it depends on the area. In a biopsy, they look at the cells in the sample(s) underneath a microscope. So the biopsy will provide better answers as the actual cells in the sample are being examined. Your enlarged nodes could be from infection, cancer or impingement of the lymph due to the cervical rib.

I'd want any cancer concerns ruled out first but your cervical rib is likely the culprit. It just took an initiating event - the injection - to set the process in motion. If there is an underlying abnormality, diagnosis seems to be made quickly. I also fall into this group given I have different bony abnormalities on each side - right was a large bone tumor but was set off by an MVA and left is a cervical rib. I've had the right 1st rib removed and have had great results (surgery was 5.5 years ago).