[nicinboston]

Hi everyone,

I'm new here for posting but have read this forum a few times before when my symptoms started in January of this year - reading everyone's comments has really helped me. This forum also encouraged me to persist and find a TOS specialist after FOUR doctors dismissed me when I said I thought I had TOS (none of them actually did diagnostic testing or imaging - they just looked at me and said, "no, you're not a weightlifter, you don't have TOS, you're just stressed/anxious/have a pulled muscle").

I am in Boston and finally found a great thoracic surgeon who studies TOS. He ordered a CT and some sort of specialized MRI and did all the movement/arms-above-head tests in his office. Both scans showed significant compression of the right-side thoracic outlet. He said I'm a three on a scale of one to four, one being no compression, four being the worst compression. I have an elongated C-7 and some weird tissue bands between it and my first rib (pretty sure I got that right...basically, I have no room in there!).

Oh also, I broke my right collarbone when I was about ten and it healed sort of "lumpy," so I'm sure that doesn't help.

Initial symptoms:

Choking sensation on both sides of the base of my neck/throat and collarbone
Right side of neck seized up - movement was very difficult
Neck felt swollen
Pain radiating through collarbone, neck, jaw, and ear
Pressure in eye

Current symptoms:

Pain in right side of neck
Rights side collarbone pain, usually sharp and sudden
Can feel pulse in right side of neck when lying down or sitting still, right side pulse in neck is strong than left
"Whoosing" in right ear
Right side jaw pain
Pain in forearm and bicep
Tingling in right arm sometimes wakes me up
Extreme tightness on right side trapezius, shoulder, the "ridge" across the top of my torso from neck to end of shoulder
Can feel pulse in bottom of right foot (weird, I know), especially after a lot of walking or mild exercise

I also can't stand for anyone or anything to put any pressure near my right collarbone. Makes me feel very icky.

I think I'm the same as just about everyone here with what makes symptoms worse - basically, using my right arm, ever! Especially above my head or carrying something heavy.

What helps:
Valium
Rest/sleep (usually feel best in the morning)
Warm showers

I used to LOVE massage and got one weekly to help with migraines, but I've found that no matter how careful my massage therapist is, massage tends to exacerbate my TOS symptoms. Really depressing.

I haven't tried PT because my plan with my doctor was to try the Botox injection in the scalene first, then start PT. But of course my insurance won't approve the injection - we've been fighting with them for about six months. So right now I just try not to do anything to make it worse and take a half a Valium when the pain flares up. I'm thinking of just starting the PT anyway.

Anyway, I hope this wasn't too long. Thanks to everyone for sharing and good luck to all.

Nic

[somato]

Hi all,

Long time reader/lurker but first time poster as I have been hesitant to chime in since I can still work and my condition is not nearly as bad as most of yours. I don't have issues doing most day to day things unless they require a lot of arm strength or endurance both of which I have very little. Here's my brief story:

I am 34 and was diagnosed with bilateral TOS a few years ago (2007). From what I can figure out, my TOS gradually developed over a long period of time as a kid due to a number of factors such as repetitive strain from swimming and computer use, bad posture, minor whiplash in an accident, etc. I had inklings something was not right as early as 2000 but it wasn't until late 2006 when it really became noticeable.

Symptoms:
-Poor circulation in arms/hands, especially when raised > 90 degrees. This results in fatigue, heaviness and tingling.
-Poor circulation in feet
-Winged scaplua on both sides (much worse on right)
-Lots of muscle tension everywhere, especially scalene/traps/scapula/upper spine area
-Tender spots all over that cause aching when pressed with light/moderate pressure
-Cracking joints, especially my shoulders and neck which get cracked repeatedly throughout the day
-Some minor tingling and coldness in my hands
-Random aching in various places

Things I have tried:
-Saw a neurologist focused on TOS and was diagnosed with bilateral TOS and very minor carpal tunnel.
-Physical therapy for ~3-4 months, didn't seem to do much good at all.
-Massage therapy for ~3 months, went once a week and it loosened me up a bit but the relief only lasted a day or so. Eventually it stopped having much affect at all.
-Saw a chiro who had me do spinal manipulation for ~6 months to help with posture, now I go every 6 weeks. Also found my vitamin D levels were quite low so I am taking that as well.

No idea what to do next, but that's for another post!

[Shoestringlover]

Hi all-reading your posts and messages has been such a help and mental relief since my TOS diagnosis. I was diagnosed with vascular TOS finally, two years after i had a traumatic fall where i dislocated my shoulder and fractured three upper ribs. I started PT two weeks ago, which is exacerbating all of my symptoms. Currently debating surgery. My symptoms are: numbness, tingling, twitching, shooting pain in my collarbone area and above the ribs that were injured, pain, nausea, pain... Shoulder surgery in June 2010, fixed my shoulder, but i am afraid now seems like just a second trauma to increase all of my other symptoms.

Thanks for all your posts, very informational.

[chroma]

Originally Posted by nicinboston

...
Current symptoms:

Pain in right side of neck
Rights side collarbone pain, usually sharp and sudden
Can feel pulse in right side of neck when lying down or sitting still, right side pulse in neck is strong than left
"Whoosing" in right ear
Right side jaw pain
Pain in forearm and bicep
Tingling in right arm sometimes wakes me up
Extreme tightness on right side trapezius, shoulder, the "ridge" across the top of my torso from neck to end of shoulder
Can feel pulse in bottom of right foot (weird, I know), especially after a lot of walking or mild exercise
...
I haven't tried PT because my plan with my doctor was to try the Botox injection in the scalene first, then start PT. But of course my insurance won't approve the injection - we've been fighting with them for about six months. So right now I just try not to do anything to make it worse and take a half a Valium when the pain flares up. I'm thinking of just starting the PT anyway.

Anyway, I hope this wasn't too long. Thanks to everyone for sharing and good luck to all.

Nic

Hi Nic,

I have many of the same symptoms including neck pain, tight traps, tinnitus and more. I also use valium and hot showers.

I've been supplementing with Magnesium because a deficit of it can cause muscle spasms. After about a month, it seems to be helping. You can find us discussing it in some other threads.

Regarding the botox injection, how much would they charge you if you paid for it yourself?

[LillyBella]

Hey everyone

I'm hoping to find someone who shares my similar symptoms...especially someone with a happy ending.

My name is Kristen and I'm a stay at home mom to 3 kids, I don't do anything repetitive, never had an accident or injury. I have had 3 c-sections and my kids are 7, almost 5 and one an a half. I'm 30

Over a year ago I noticed a slight pain in my wrist, especially when I pressed down on something. I hoped it would go away and didn't think much of it. A few months later and it didn't go away and in fact now the top of my hand and side of my thumb was hurting. I went to see my family dr who sent me for an xray. She didn't see anything but decided to treat me as a sprain, put me on a 7 day pack of steriods and told me if it didn't get better that she would refer me to a bone and joint dr. It didn't get better so I went to see him. He x-rayed it as well, put it in a splint for 6 weeks. During that time, I started feeling some numbness, mostly in my thumb and bottom of my wrist. Since it didn't get better with the splint, the bone dr sent me to have a nerve study done. Days leading up to the nerve study, my symptoms disappeared. Even on the day, I tried to get something to flare up so I even tried doing push ups (something that was very painful before) and nothing. I had the study done and it came back there was no damage in my nerves. Since my symptoms went away, I thought everything was finally healed and fine. Then a month later everything came back and this time I had pain all the way up my arm, almost to my shoulder. I went back tot he bone dr and he sent me to have an mri. They looked at my mri and said it "didn't look too bad" but decided I may have some arthritis in my cervical spine. Sent me to PT for 6 weeks along with a daily nsaid. During the PT, they mostly focused on traction. I did this for an entire month and my symptoms got worse. My grip was nearly gone, the numbness was so intense and the pain was awful. My husband travels a lot for work and I remember laying in bed one night while he was in another country, crying that I was going to have to drag all my kids into the ER. I went back in to see the bone dr and was a hysterical mess. They said they had no idea and gave me a referral to a spine dr. I called my family dr and cried to her on the phone and she ended up giving me a pain killer and a nerve pain killer. I was pretty emotional as the numbness and pain never goes away and now it was in my shoulder and I even felt something strange going up the side of my neck and every once in awhile in that side of my face. I did notice the numbness in my fingers were mostly on my 2 outer fingers and then also the fleshy part of my thumb.

I went to see the spine dr who told me my mri was perfect and there was no arthritis or bulges in my neck. He read my the symptoms to thoracic outlet syndrome and referred me to a PT that actually dealt with several patients that had tos. I've been going for 3 weeks now. I have NO idea if it's working. Some days I think it is but then I have days like today where it's just as bad as ever.

I do my stretches every day, I've been really trying to not pick up the baby with my left arm (though it's very difficult) as well as not lay on that side. I'm trying to have great posture throughout the day as well. At the first day of this diagnosis, I was pretty optimistic but as the weeks go on, I'm feeling down again. I feel like this is going to be my new normal, this is my life now and it stinks!! I'm still fairly young, my kids are young. I don't know why this happened, why nothing seems to be working? It's affecting my life in all areas and I'm feeling really...defeated.

I'm open to any advice, stories, avenues I haven't taken...anything. Thank you for reading

*I copied your post to a thread of your own for hello's & replies from members -Jo*mar*
here-
http://neurotalk.psychcentral.com/sh...d.php?t=160657

[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

[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?