New Member (TOS) - Question for All
 

I am writing hoping that someone can give me some insight. I've been recently diagnosed with Thoracic Outlet Syndrome (by several drs), although I found out yesterday that the cause is more relative to Thoracic Outlet Compression symptoms.

I've had several problems since June 1st -- numbing of left side of face, shoulder, arm, and hand...and lots of pain! I had a brachial MRI done recently. My primary is great, but he only told me that the radiologist reported compression on my subclavian artery and brachial nerve. He sent me to the surgeon and the surgeon said that I had a rare case of TOS and couldn't figure out the next step. I discovered through this site that he is one of the most reputable vascular surgeons. Unfortunately, he didn't have the MRI results and I wasn't informed enough to explain it to him.

I had an MRA performed yesterday and am waiting for the results. While I was there, I requested my MRI results. To my surprise, the radiologist reported that "there does appear to be mass effect upon the left subclavian artery at the costoclavicular space" and later in the report, "suspected mass effect upon the neurovasicular bundle including the subclavian artery and the brachial plexus".

I'm confused, and feel like "mass effect" should be somewhat self explanatory, but I'm still having a hard time piecing it together. I'm not quite sure what a "mass effect" is, or what it possibly means. I am aware of what an actual mass is, but even googling a "mass effect" in relation to the subclavian artery doesn't turn up much information.

Does anyone have any knowledge of this, or any further explanation of what a "mass effect" entails?

I'd appreciate any insight.

Thanks!

I'm new to this forum, and just ran upon your post. Did you get an answer to your question regarding the "mass effect"?

No answer yet. Most info I've found on "mass effect" has to do with growth in the brain. I did end up finding a couple of sites that point to lung cancer when the "mass effect" is on the subclavian artery. I'm hoping that the MRA rules out any kind of mass! I'm assuming that it's usually a benign or malignant tumor, possibly cyst growth, that effects the nerves, arteries, etc. I'm hoping to hear from someone that has had a "mass effect" so that I am aware of the possibilities it presents. Does it need to be removed, is it invasive, does it matter if it's benign or not when effecting an artery, etc?

Thanks for responding. Are you curious as well? Any kind of similar situation?

hi tracy,

welcome to NT. i'm sorry but i can't answer your Q's. i hope someone will come along who can help.

i just moved from denver to fl. fyi :)

keep going back to the places that did your tests. you should be able to sign a release and not only get the films (maybe on a disc) but a copy of the report.

i hope you'll get some help from your drs. someone needs to coordinate the medical efforts.

Hi Tracyd,

I am a TOSer and from what you describe I am thinking that they are saying by "mass effect"s that the effect of the compression would be similar to being compressed by a mass but that there is not an actuall mass there. I think its talking about the degree of compression on the blood vessels and nerve bundle.

If you are in the hands of one of the vascular docs in denver you are in good hands. There are two good ones there. I would try to see both and get a second opinion.

Keep us posted.

Thanks Shelley,

What you said makes a lot of sense -- hopefully I'll find out today. In the report, it did state that there is no cervical rib or an anomalous muscle. Hopefully it's an easy fix, whatever it is that's compressing the subclavian artery and brahcial plexus.

I am seeing one of the two great vascular surgeons (I've never been happier to live in Denver as I am now!). The dr mailed me a report of my appt with him and I am very impressed with the details he noted. Most was accurate and he paid a lot more attention to what was going on with me than I thought. In the report, he once again stated that although I have TOS, this is not a typical case. I do plan on talking to my primary about seeing the other surgeon -- can't hurt.

Unfortunately, my left leg and foot went numb last night for several hours. I was not happy about this! I know that TOS has nothing to do with my leg, or my face going numb. Bummer. I think I was happier being in denial.;)

Thanks again to everyone. I'm still amazed at how supportive people are on this site. It helps to know I'm not alone.

I know that the medical professionals say that it has nothing to do with the legs going numb, but odd that I had the same issue. All of my symptoms are on my right side. The leg would/does still drag every now and then and numbing and burning sensation. Not often, just now and then. I'm told that everything above the waist is TOS, below is not.

Welcome to our TOS world.

This is a great place to get information about "your" TOS signs, symptoms, and etcetera stuff. You will finds lots of helpful suggestions to try. Not all of us are the same, but when you read another TOSer's post, you can identify so much with what they're going through. We truely understand and are here for you... :grouphug:

About Compression, also Nervous System's "Strange" Antics
 

:)I don't have TOS but want to add that I had "compression" issues and it just meant compression by muscle and other tissue which was normal to keep nerves and blood vessels in place in my ankles. I had tarsal tunnel syndrome in both ankles, like carpal tunnel. It has much pain involved too. I had been 20-30 lbs. overweight for years and guess it caught up to me but then was also found to be pre-diabetic, bad combination.

Long story short, I had surgery on left ankle 1st, the muscle and tissue are cut, releasing the nerve and blood vessel but acutally they stay in place. It just gives everything there more room. And the surgeon said I "had a lot of nerve material", 4 branches instead of 2-3. But then the pain subsided in both legs and feet!! The Dr. said that happens sometimes. So I guess you can expect the unexpected and it can help explain the seemingly strange nerve symptoms of some TOS patients where their leg and foot is involved. (?):confused::)

Also, I think your Doctor's would have done other things right away, run more tests, talked to you about it immediately, if they had suspected cancer or anything dangerous in these tests. There would have not been any mailing of test results.

Hi Tracy,

Keep us posted on what the docs say. And it is not out of the realm that the leg and foot went numb because of the TOS. Keep in mind that the vascualr system is a closed system and that compression in one area affects the whole system.

Also that compression on the nerves is probably spasming all the muscles in the cervical area and the back and if its pulling you out of alignment then its possible it put some extra pressure on your sciatic nerve and created the numbness in your leg.

I so think you should mention the leg and foot stuff however and that they should do a cervical MRI with felxion and extension xrays to make sure nothing is pressing on your spine.

Great to have you with us!!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene :hug: