thoracic outlet syndrome

Hi,
My physio told me I have thoracic outlet syndrome about 9 weeks ago. The treatment and exercises have not been effective. My arm still feels heavy and the pulse stops when I raise my arm and turn my head. The physio suggests I see a neurovascular surgeon, a neurosurgeon or a neurologist. Could you please tell me the procedures and tests involved when I see each of them? I want to make sure I know what I'm getting myself into.
Thank you for your time,
Sam

[bhups1]

Hi, please follow following links for information regarding diagnosis and treatment.  The tests which are needed before surgical options are:
• Pulse volume recordings
• X-rays of the neck or shoulder;
• Doppler ultrasound;
• Nerve conduction velocity test;
• Computed tomography (CT) scan;
• Magnetic resonance imaging (MRI);
• Venography; or
• Arteriography.

http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome
http://www.medicinenet.com/thoracic_outlet_syndrome/article.htm
http://cms.clevelandclinic.org/vascularsurgery/body.cfm?id=42&oTopID=31
http://www.vascularweb.org/patients/NorthPoint/Thoracic_Outlet_Syndrome.html

[shell1925]

Hello!  I was just diagnosed today with thoracic outlet syndrome after 18 + months of left arm pain.  I have had numerous cardiac workups because along with this I have a hiatal hernia w/GERD so I was constantly thinking I was having a heart attack.  Anyways, I have been prescribed 4 weeks of physical therapy 3 days a week.  I go back to the vascular surgeon in 6 weeks.  I have had a MRI of my neck along with a CT scan of my chest and neck to r/o an extra rib.  I do not have an extra rib so they do not think I would be a good candidate for surgery.  My vascular surgeon also has me going to a neurologist to make sure it has not caused any nerve impingements since I have been having the symptoms for so long.  I have had a nerve conduction study over a year ago but that was before the pain was really bad and before I had arm weakness.

Just curious as to what your symptoms were.  Does your pain feel like it settles in your shoulder and elbow.  Sometimes my pain is so bad in my shoulder and elbow.  I was diagnosed by him doing these movements with my arm where I had to turn my head.  He said it is really hard to get diagnosed with diagnostic tests unless you do in fact have an extra rib.  I wish you lots of luck!

Shell

[sam1042]

Hi
Thanks for the list and URLs. This really helps.
Do you have any idea how these tests cost??

[sam1042]

Hi
Thanks for the sharing your info.
You mentioned going to a neurologist. If you do have any nerve impingements, what happens next? Can these things be undone??

I usually have a dull ache between the shoulder blade and spine, and around the collar bone. There's a tingling sensation/pain/numbness  in my shoulder and the little finger. When I'm washing my hair in the shower, my left arm loses its strength, begins to hurt and putting it down makes it better.

[shell1925]

I am going to the neurologist to make sure that there isn't any damage.  As far as what happens if there is damage I have no idea.  I have my physical therapy set up to start next Tuesday so hopefully that will bring me some relief.  I really don't know if my symptoms are from the TOS or the hiatal hernia/GERD, since they both cause similiar symptoms.  I go tomorrow for a 24 hour pH monitoring test to measure the amount of acid my stomach produces.  I just can't wait for all these tests to be done with and they can just fix the problem.

How have you been doing?  I hope they can stop your pain too.  Keep me posted!

Shell

[sam1042]

Hi
Thanks Shell, I hope your physio sessions go well.

Is anyone out there aware of any randomized controlled trials on the efficacy of exercises for the treatment of thoracic outlet syndrome?? I've been searching the web but only found stuff on surgical treatment so far.

Sam

[cricket66]

I emailed a thoracic surgeon in Boston, MA who said they see 40-50 cases of TOS/yr...Surgery for 5-10/yr.  Stated that Phys. Therapy helps many.  I had consult with a thoracic MD, now seeing a vascular MD as I have vascular symptoms in both upper extremities, on top of all my neurological ones.  I also have Cervical bulging discs with bone spurs and an annular tear at C6-7.  Two neuros, Ortho, and Physiatrist say discs are not causing my pain.  Have had 2 epidural injections, no help.  My pain is also at the bottom of my scapula but I also get pectoral pain at the front of my armpit.  You?  I have blue dots on my palms.  Have you or anyone else heard of this?  Best of luck to you at Phys. Ther.
Cricket66

[Dr Santos]

How are you? Treatment of the thoracic outlet syndrome (TOS) can usually be successful with conservative measures. What were the treatments and exercises that were not effective? Have you tried ultrasound? Modalities with deep heat, electric stimulation, superficial heat, stretching exercises, postural correction exercises, and strength and endurance exercises are all useful or necessary components of TOS treatment. Ultrasound is the preferred modality as it is capable of heating deep muscular and soft tissue structures, which is essential to increase elasticity and facilitate effective stretching and/or manipulation, especially for the scalenes and pectoralis minor muscles. I

I hope this helps. Take care and keep us posted.

[flygirl89]

I was wondering what you and sam1042 have found out.  I have had sores on certain fingers of my right hand, along with blue color since last winter.  They went away with warmer weather and came back about October.  In November I went through a period where I had tingling, numbness and lost of use of my right side(arm and leg).  Feeling started coming back after 3 hours and I relearned walking.  It was as though the signal from my brain was interupted.  Since then, I have occasional numbness in part or all of my right hand while sleeping and once I woke up with tingling in my right leg and arm while feeling like an internal squeezing.  There is definitely a lack of blood to my right hand.  The physical therapist said thoracic outlet.  I have seronegative spondyloarthopathy as well.  When I went on a dose pack of prednisone in November for a flare the sores pretty much went away.  On occasion one finger gets numb and swells and I have pain in the arm.  What do you think?  Thanks.