Hi all this was posted in another area and again I wanted to repost it so we all had a chance to welcome Beth. So welcome Beth I hope that you can gain more knowledge from us and welcome to our community!!

Take care, Victoria


New and curious and grateful!!!
Hello All! I have recently been diagnosed with TOS, although today my doctor indicated ONCE AGAIN that she really isn't 100% sure what I have! This site has been a godsend in that I have been able to educate myself and realize that there are others who understand. So, THANK YOU TO ALL OF YOU!!! I am
curious.... has anyone had TOS without much arm/hand pain?I have tons of pain in my collarbone area, swelling over the brachial plexus, have had elbow pain, pain under my arm,and terrible pain in my upper left chest area. I also have painful traps and back of neck. What type of doc is the best for diagnosis? I would be very thankful for any help/info!!! Happy Valentine's Day to all!! Beth

Hi Beth - just my 2 cents, but find a neurologist who knows about TOS and how to treat it, and also find a good pain management doctor. I happen to have gotten lucky and found a Pain mgmt doc who is a neurologist and also knows about tos! from what i've read, a good chiropractor who knows abotu TOS is also very very helpful.

Hi Beth, and welcome! Sorry for what you're going through, though!

Most of my pain is just as you describe, over the collarbone, side of neck, shoulder blade, and traps...I get a lot of swelling over my collarbone in the area of the brachial plexus. My collarbone is unstable, which contributes...my TOS was from an auto accident, with neck/shoulder trauma. I rarely have hand pain, although I do have constant numbness in my hand, which gets worse the more I use my arm/hand. Fine motor with that hand is really difficult. Don't have much elbow pain...some burning there and spasms at times...but do have the pain under my arm, sometimes pretty intense.

I don't have a lot of the chest pain as you describe, but occasionally some. I've heard of others here who do, though.

I've also found that Physical Medicine and Rehab docs (PM&R) seem to be pretty knowledgeable about TOS...I've seen three, so far, and they all knew exactly what to look for and all agreed with TOS dx.

Hope you find someone who can understand and help you! Again, welcome to the forums...you will find a wealth of knowledge here, as well as friends who can relate!

Take care,
Donna

Hi Beth,

In my opinion for what it's worth there are a few options that you need to consider when deciding upon which doctor to choose..........
1. Where you live--- hopefully you live close to a medical center with access to competent physicians.

2. A doctor who knows about TOS----these are generally vascular surgeons, chronic pain physicians or any really well educated doctor....... although this is sometimes difficult to find. We tend to educate them about TOS...... especially if they are a lone doctor in a clinic with no other physician to help educate each other...... is imperative that physicians actually read medical journal articles and this is not often the case..... anyway getting off topic here sorry....

3. You will need testing done. As stated earlier access to medical testing is imperative. There are many postings as to which testings should be done to determine your diagnosis. I'm not going to go into exceptional detail here but I will note the tests that I have had done to diagnose my TOS.... [I developed my TOS after lifting a patient up from a toilet that was too heavy and injuring my neck, back, shoulder and arm. (I am a nurse--- or was five years ago until my injury)]
my testing includes------ head and neck MRI
EMG----probably about four of them all normal
chest x-ray--- which found cervical ribs
(didn't help much-- as this makes the brachial plexus space smaller)
bilateral Doppler ultrasound of the brachial plexus
veinogram

All of this eventually led to the first rib resection as I was diagnosed with vascular thoracic outlet syndrome.... I do however have neurological symptoms as well... I don't regret having my surgery I had six months completely pain-free until my physiotherapist pushed me so far that all of my symptoms came back....so I am just the same as I was presurgery.....don't know what can happen now managing life on drugs until I figure out what to do.....may not do anything may have to live this way

such is life

I hope this helps you although my best advice to you is to listen to what everybody has to say and take bits and pieces from that and decide what's best for you. You are in control of your diagnosis and you are the one who says yes or no to what happens.

However it is in your best interest to take the advice of physicians............... unless they were putting you in pain !!!!
never ever ever let a physician put you into a position (physically) during an exam that causes you pain! If you do this it may cause you more physical harm and more nerve damage if you are neurologically impaired......always keep your comfort in mind....and the fact that you are in control.

If you need any medical articles pertaining to this please let me knowI have many many many articles and can you e-mail them to you in a PDF form so that you can print them out and take them to your doctor should you need to convince them of diagnosis!!!!!!

Please feel free to private message me if you want more conversation or post hereI will check up and see if you need anything else. However the advice that you get from other posters may be more than enough to cover what you are looking for

there are so many people here with so much knowledge it is frightening.

I think if you got us all in a room together it would scare the hell out of all doctors who are looking after us

take care and best of luck!!

Victoria

Thank you all for your responses! I was soo grateful to be welcomed so nicely! I am currently working with a great physical therapist and I have an appointment with a neurologist next week. I am just concerned about the MRI
that I am supposed to try to have again. I went last week and the machine was so small and awful... I couldn't do it!!! Has anyone had an open MRI with success? I has one a while ago and the surgeon I saw said the open pictures are very inferior! Yikes!!! What to do??? I hope and pray that many of you are having less pain than usual today! God Bless. Beth W.

welcome to NeuroTalk Beth.

if you ever need any help with the forums...i'm just a pm away. or any of the mods.

I had three MRI's in a row of my cervical, thoracic and lumbar spines. I was in the MRI machine for just shy of two hours. I was pretty freaked by the size of the machine so I took a good dose of pain meds which relaxed me.

Not sure if my pain mgmt doc would completely agree with that, but it worked.


good luck.

Johanna