Living with Thoracic Outlet Syndrome and Cervical Radiculopathy

Thanks for replying.  It's nice to have someone who understands exactly what I am going through.  Most people are like "What?".  Have you tried any series of steroid injections?  Are you on daily meds to control the pain?  I have considered massage and actually my mother sees a massage therapist for her Torticollis.  I don't know if you are familiar with that, sometimes it's listed as Wryneck, but it is basically a form of Parkinson's it just only effects the neck muscles.  She's been suffering with that for 20 some years now.  She gets Botox injections every 3-6 mos. and was seeing her massage therapist once a week.  Incidentally her massage therapist also has Torticollis.  Anyway, my mother has greatly benefited from massage and her therapist offered me a free massage to see if it helps.  I have also been considering accupuncture, biofeedback and yoga.  I'm willing to try anything at this point.  Well anyway I wish you well.  It was nice to hear from someone who understands my pain and perhaps we can keep in touch if one of us finds a surprise relief if even only temporary.  Best regards!

Hi to all, as I am reading the posts & replies I am shocked I don't hear anyone talking about rehab exercises!  Here are a couple of sites - do these exercises and you will get better.  Also, get the ergonomics (work & home) and your posture perfect - this is your only hope! 

http://intraspec.ca/PIIS0749071203000817.pdf

 

http://www.med.umich.edu/1libr/sma/sma_thoracic_rex.htm

 

I feel better already - just a couple of weeks.  I've lost eight years of my life to this pain because the doctors didn't believe me or were lazy or just considered me a 'mystery'!!

 

Best of luck,

Karen

I was reading your post and believe I was sent to the same vascular Dr.  Was the Dr. you went to at Thomas Jefferson Dr. Dimuzio?  Just curious because I went to him as well I was told he was "THE" specialist in TOS and he too recommended a certain PT that was a firend of his and was a little far out of the way and most likely wouldn't take my insurance but that seeing him and fronting the $150-$200 for the first visit would greatly benefit me.  I of course did not go because I quite simply cannot afford it.  I did go to another PT but this was prior to my TOS diagnosis.  This PT was actually the one who diagnosed my TOS.  I was originally sent there for Cervical Radiculopathy, which they have now concluded that I have as well.  I wish you all the best and I'd be more than happy to share more of my story with you.  It may end up being benefical to both us to swap info. 

That was the MD I went too! How strange is that! The vascular surgeon I worked with actually personally recommended the MD from Jeff and said he had worked with him at some ponit in his career, and I trust the MD I worked with. The PT was in Brumall(if that's how you spell it). Did you ever find out if your problem was a cervical rib or scalene muscle? Muscular problems are a lot easier to treat with PT then a cervical rib. I'll be honest, I had to show Dr. Dimuzio where my cervical ribs were on the films and I can't even read xrays. I'm sure he know what he's doing in the OR though. A lot of medical professionals don't even consider TOS as a condition. They feel its very subjective. If only they knew. Are you considering surgery? Are you able to work?

I do not know what the exact cause of my TOS is and neither do ther Dr's.  I really feel that they don't really care what the cause is they are just interested in treating it.  I am on chronic pain meds Oxycontin and Ocycodone IR.  I also receive injections about every 4 to 6 weeks usually an alternating pattern of Stellate Ganglion Blocks and Cervical Epidurals whiich do seem to help some but only for a short while usually I feel the pain start to increase around the 3 week mark.  Right now I have been suffering becuase I am 8 weeks post last injection and one of my pain meds is one that was involoved in the pharmaceutical recall and is on back order at just about every pharmacy.  My Dr. did switch me to Percocet 5/325 to hopefully hold me over until my regular med is back in stock however the Percocets don't seem to help as much.  One reason is they are not the IR so it takes longer to get into my system and secondly she only wants me to take one 5/325 due to the acetaminophen, with the IR's I was taking 2 5 mg capsules every six as needed along with a regular strentgh tylenol when I needed it.  She does not want me consuming large quantities of acetaminophen due to the potential liver and kidney damage which is why she put me on the Oxy IR's.  In addition to the narcoctics I am also taking 2 antitryclics, Remeron 45mg (which is for my depression but also helps with nerve pain) and Amitriptylene, and Flexeril as a muscle relaxer.  These are my daily regimen for my TOS which is in addition to the other meds I take for other medical problems.  They have not started me back with PT again becuase my insurance will not cover both the injections and the PT it's one or the other and I find the injections more benefiicial at this time.  However I do some of the exercises and stretches I was taught last June when I was in PT at home.  Dr. Dimuzio when I saw him had said that my TOS was not an advanced case and would most likely resolve on it's own with conservative treatment.  He did not find me to be a surgical candidate at the time.  Now if I see him a year later will it be different? Maybe.  Right now all I can do is try to make myself as comfortable as possible to get through daily life.  Hope all is well with you!  Best regards!

This may be something I will consider in the future.  I had a bit of a scare yesterday as after a day of easy work, I work as a demonstrator handing out flyers and coupons, after a 6 hr. day filled with many breaks I drove home with pain not just the normal pain on the right side but with pain on the left side around the collar bone wrapping around to the back under the armpit, a sharp stabbing pain and a dull ache in my shoulder, much the same as my symptoms on the right.  I am now scared to death that I have now developed TOS on the left side as well, posssibly from over use.  I will be contacting my Dr. this week to find out.  I wish you the best with your surgery!  Please let all of us suffering with TOS know of your outcome!  Thanks for replying!  Best Regards!

To give you a little history...I've been a nurse for 18 years.  I'm 40 with 2 teenage boys.  I started having pain in my rt forearm two years ago (right handed too) followed with puffy rt hand, shoulder stiffness and eventually swollen rt forearm.  The edema (swelling) in my rt forearm never went away no matter what I tried....I went to numerous docs....primary, ortho, sports med, etc..  was dx with tennis elbow, golfers elbow, maybe carpal tunnel...wrong diagnosis all along.  When my rt hand started going numb in January I got scared.  I have a high pain tolerance, but the numbness was too scary to avoid.  So I went to a neuro doc who sent me for a MRI and found 3 small herniated discs in my neck...not worth operating on though.  He was the one that finally said you may have TOS??   As a nurse I'd only heard of this in passing once....!  The neuro doc sent me to my vascular surgeon who confirmed it with some tests.  My rt subclavian vein gets 100% pinched off by my first rib and collarbone while I raise my arm up...that is why I have swelling in my forearm.  The blood is pooling (not good circulation).  HUGE RISK FOR A BLOOD CLOT! I also have the neurogenic form so he has to take my scalene muscles.  I am now giving myself Lovenox shots in my stomach twice a day..this is a blood thinner.  I am so fortunate that I did not develop a blood clot!  The neurogenic part is frustrating because of the occasional numbness, nerve pain etc...  The only meds I choose to be on after are my blood thinner, muscle relaxer, and Tylenol ES.  The nerve meds they tried early on such as amitriptyline, neurontin, etc..AND arthritis meds NEVER really worked....so I decided I'm not taking it if it doesn't work!!!  Hopefully, my surgery will go ok.  I'm told it will last 6-10 hours depending...long recovery and the first two weeks are very painful.  Lots of physical therapy afterwards also...but, I'm a strong willed gal so I will manage! 

 

IN the meantime I lost my job as a home health nurse last month!  During all my doctors visits, etc...after my PTO time ran out they got rid of me!  Wasn't that a nice caring hospital!  They found out I had some medical conditions so I guess they thought it'd be good to get rid of me...Do I dare say which one it was..probably not.  Oh well, forgive but not forget..

 

Hope you will get yourself checked out by someone who really knows TOS.  Don't settle...these docs are not all specialist in this rare disorder.  Take care!

Andi