[chroma]

Originally Posted by reddragons

Hi,

I had bilateral venous occlusion in both axillary veins. My symptoms first appeared when lifting weights. My L arm was affected first in 2006. My R arm jumped on board in 2008. Up until my R arm was affected I was on coumadin for 9 months due to failure of a venogram in my L arm. Once my R arm became occluded (originally was being treated at the VA), I was sent to the Cleveland Clinic. A few venogram failures later on my R arm and I was running out of options. I had my 1st rib resected on my R arm in January of 2009 followed up by successful venoplasty! I have had zero issues with my R arm since! L arm... I had 1st rib resected in January of 2010, followed by unsuccessful venoplasty. I have developed some sever scar tissue restrictions. Over all I have pretty good drainage, due to extreme collateral flow, and other then intermiten numbness and tingling. Problem- I was love to lift weights and exercise and most of my issues are exercise induced. My vascular surgeon told me to keep hitting the weights and exercising, since forcing blood through, will over time increase the collateral flow and possibly get to a normal level. I kind of doubt it, but I want to believe it since that what I like to do. Over the past 4 weeks or so I have noticed some increased swelling in my hand and redness. Also, my L arm, shoulder, and axillary area, is somewhat bigger than my R side. The scar tissue I can tell is getting worse, and I am just trying to figure out what my options are both short term and long term complications. Thanks

I don't disagree that exercise would increase your blood flow needs and therefore stimulate collateral circulation, but I would never have suggested weightlifting as the means to do so. Weightlifting can increase tightness and hypertrophy, both of which are awful for TOS.

I think your best option is some kind of consistent cardio, like walking. If you do a brisk pace, also known as power walking, do not forget to bend your elbows or you can injure yourself further. As I did. You can google for "power walking tips" and such for more info.

If winter weather is interfering, there are indoor walking DVDs by Leslie Sansone which are nice to follow along with. They include side stepping, kicks, etc. to get the heart rate up.

I also have problems with exercise and have to do take precautions such as incrementing my program very slowly and finding arm positions that work better for me.

Also, I've read from more than one source now not to do deep dips. PT people have stated that this is bad for the shoulders due to compression. Another thing that is awful for TOS.

HTH. Good luck.

[Sarah21]

Hi, I'm Sarah. I am 23 now and was diagnosed with bilateral TOS in junior high but definitely had it before that. This was not a result of an injury. Things got much worse in the last two years. I have arterial and venous TOS and had a left rib resection this summer and am doing MUCH better. I wanted to lend support to others who may be facing surgery or considering their options and learn more about other people's experiences as well. I also have Ehlers Danlos syndrome (hypermobility type) and was wondering if anyone else with TOS has the same thing? In addition, I had chest pain with my TOS as it got worse, which was what made me need surgery but I know that is very uncommon so I was also wondering if anyone else has had this experience. It took awhile, but doctors did confirm this was a result of TOS. I have posted a thread about the possible Ehlers Danlos connection and chest pain if anyone has more questions or has had the same experience-check it out!

[Bronwyn2]

Hi, my name is Blu. I've had problems for about 10 years with my arms and mostly been told I have varying degrees of tendonitis. About 5 years ago I had carpal tunnel surgery done on my left wrist. That helped my symptoms some but they have come back over the last year or so. In September I catered a friends wedding and never really recovered from that. I finally got referred to rheumatologist who suggested TOS after listening to my symptoms and noticing that my pulse disappears when I raise my left arm. I was scheduled to have a scalene block done on the 18th but came down with the Norwalk virus so now I am trying to wait patiently for my rescheduled appointment on January 6th. Thank you all for being here, I've learned alot about TOS in the last few weeks from reading this board.

[Mjg13]

I was finally dx with venous tos (75% mechanical occlusion of subclavien vein) feb 2011, symptoms started 12/10, in beginning were deep itching in breast that led to swelling of my arm and purple color along with the rest of typical tos symptoms. The 25 of feb I saw a thoracic surgeon who completed a first rib resection three days later. Extremely painful , had vats w/ chest tube 4 days in hospital. My symptoms never got better only worse except the color of my arm and hand changed from purple to blue/red to blotchy, I could not be touched on my upper right side at all ( sound familiar?) finally dx with rsd but lost the use of my right hand. Nerve blocks and meds didnt work. I was told use it or permanently disabled. I forced myself to use it and 9 months later begged to go back to work and did. It hurts like hell, I keep pushing forward always wondering if I have rsd or a failed surgery, fustrated and angry. Left side is beginning same symptoms. I am not on meds, the burning and stingy is the worse and second is the pain from swelling and cold hand. Who knows how I've pulled it off. Good actress?

[piratemet]

Hi Everyone! I've been reading through the posts for a few months and felt it was time to introduce myself. I've had worsening, progressive left arm, neck and back pain for about 4 years with left arm numbness and tingling down the lateral arm into my 4 and 5th fingers.

I was shuffled around to orthopedic docs who immediately wanted to do a diskectomy due to herniation at C5-C6 and C6-C7. At the time I was a 27 year old mother to a 2 year old and infant and was completing my phd so I said no way! I was able to manage the pain with intermittent steroid tapers and ibuprofen. It has gotten worse and worse through the years and I've had physical therapy and epidural injections for what I thought was disc issue.

However, I've relocated up to PA (have been in NC for the past 8 years) and things really took a turn for the worse with the numbness waking me up from sleeping (which I don't do so well anyway), not being able to hold a brush to do my hair (I'm also left handed) and not being able to hold my kiddos. Same old story, my new primary care doc sent me for an MRI and to an ortho. Same MRI results and ortho sent me for pt. This is where everything changed. On the initial eval the pt said immediately, I don't think this is disc related, I think you have TOS and he said I'm a poster child for pec minor syndrome.

He started treating me with nerve glides, ART, etc and there was improvement at times but not a whole lot. Sent me back to the doc who sent me for an EMG which was negative. Back to the doc for a follow up and he reiterated the need for diskectomy. Then he decided to do the Adson's test and it was positive. So I went to the vascular today and she was WONDERFUL! She specializes in TOS and was very realistic with me, took her time and it was refreshing to see someone who understood and didn't make feel crazy when I started crying in her office.

So...next steps, x-ray to look for the cervical ribs, pain management, more pt, no more training for my half marathons and triathlons

I'd like to thank you all for all of your posts, it's so nice to find people who understand and reading them over the past few months has really made a difference!

Also, if anyone knows any physical therapists in the southeast PA, Delaware area that have particular experience with TOS I'd love to hear about it!

[Jomar]

Hello & Welcome,

I hope each of you make a thread/post on the main TOS forum when you return, so we can say 'hi" and get to know you better..
you can copy /paste your post from here if you like & to save typing..

Here is the link to start a New Thread -
http://neurotalk.psychcentral.com/ne...newthread&f=24

[chroma]

Nice to meet a fellow pec minor syndrome patient! Although I got excited thinking you were going to reveal what your PT did for it that worked. LOL

Early on, I had similar symptoms regarding the arm numbness and 4th and 5th fingers. I did Egoscue from books religiously early on and the forearm and finger numbness was the first thing that subsided.

These days I'm doing PT and an eclectic mix of stretches and exercises from PT books and my PT. I've made enough progress, I don't think I'll need the surgery, but I'm also lucky that my symptomatic side is not my dominant hand.

Does your left shoulder sit lower than the right when you stand square in front of the mirror with your arms at your sides?

Do let us know how things go. We all benefit by sharing information.

[Titus]

Originally Posted by chroma

Nice to meet a fellow pec minor syndrome patient! Although I got excited thinking you were going to reveal what your PT did for it that worked. LOL


Do let us know how things go. We all benefit by sharing information.

How did you know that you had pec minor issues? is there a test?

[chroma]

Originally Posted by Titus

How did you know that you had pec minor issues? is there a test?

My TOS was diagnosed independently by first a chiro and then later a vascular MD. My pec minor syndrome is self diagnosed based on three things:

1) The paragraph "In 2005 we became aware of a large number of patients who, in addition to these symptoms, also had pain in the anterior chest wall, just below the collar bone along with pain over the shoulder blade and in the arm pit. Until recently it was thought that these symptoms were due to TOS, but now it has been learned that they are due to a condition frequently accompanying TOS, namely pectoralis minor syndrome." at http://www.ecentral.com/members/rsanders/ matches my symptoms

2) My PT has found my pec minor on the symptomatic side is tight. (She also agreed with pec minor syndrome when I showed her the above paragraph.)

3) When I do pec minor stretches, I can feel the one on the symptomatic side is abnormally tight. Almost like it "catches".

[Jomar]

I had time to place copies of the newest members posts here on the main TOS forum thread list.


It works best to carry on the conversations on those threads.

here is the main TOS thread list- you can find your threads there in the list
http://neurotalk.psychcentral.com/forum24.html


New members can make a new thread here-
http://neurotalk.psychcentral.com/ne...newthread&f=24