Hi everyone!

My name is Julia and I was diagnosed with vascular thoracic outlet syndrome 18 months ago after getting a blood clot in my right arm out of the blue and had a 1st rib resection and scalenectomy shortly after diagnosis. I felt lucky to find a good surgeon who had experience performing this surgery and thought my life would go back to normal.

Things changed 9 months ago when I started getting terrible shoulder, neck and upper back pain as well as pain in my fingers and arms when using the computer. I've seen different doctors but am still in pain and am afraid I'm always going to feel this way. Has anyone else experienced problems like this many months after surgery?

My pain is most acute right over the surgical site on the muscles they cut through to do the rib resection (my surgery was above and below my collarbone). Does anyone have any recommendations on what I should do? I've starting to feel very desperate and depressed and am afraid I'm always going to be in this much pain or worse.

For my work and now as a PhD student I use the computer all the time and am starting to think that perhaps my TOS is related to a repetitive stress disorder. This scares me even more since the computer is so important to my work. I've tried physical and occupational therapy and am currently seeing an osteopath who has me on muscle relaxers which helped a little bit. I've also been trying acupuncture and gentle yoga but the pain is still there. I'm willing to make major changes to my lifestyle and have already started working in a more ergonomic way and am trying to limit my computer use, but I still find that my pain is staying the same or even getting worse. Has anyone with these symptoms who uses the computer for their job found a sustainable way to keep working?

Thank you so much to anyone who can offer any advice or help or a similar story to know I'm not alone!

Julia

Hi ,
Yes , it can be very much related to repetitive uses.

Lawyers, students, nurses, musicians, you name it -anyone that is in static {non active} & desk type postures for long hours & years could be at risk.

Other possible factors-
Hyper mobility
previous whiplash,Car accidents
previous RSI (repetitive stress injuries)
upper body hits, sports injuries, falls


9 months after surgery can be about the time frame that any scar tissue adhesion problems can show up.

Seems surgery works well for some but only partially for others.

Keep looking for better ergonomics and posture helps - move around as much as you can often.
see many of our other recent threads & posts here on the forum. And the useful sticky threads up above.

get Dragon or use your speech/voice recognition software if your computer has it built in already, Vista & Win7 have it as well as Mac.

My usual suggestion is to get a comprehensive evaluation from an expert /advanced PT or a very good DC.
They should also be able to tell if something else is going on that the surgery didn't even address.

There are things that can be done if it is a scar tissue/adhesion causing some of these problems - the thing is to be proactive on therapies and not let it get to a chronic stage.

Don't assume Drs know it all or that pain meds will heal you.

You're going to have to learn about the anatomy of the upper body & use you own logic to find the best things for you.

Please do read the recent threads as many thoughts and ideas are posted

Hi
Sounds similar to what happened to me - had symptoms of both neuro and vascular TOS for some time by the time I had my first rib removed. Huge improvement immediately after surgery but then a year later, I suddenly got acute return of all my neurology again before settling into chronic pain. The theory is that there is now scar tissue/adhesions around the brachial plexus again. Unfortunately this isn't something that more surgery can really help so it does come down to learning to manage it. For me, good physio, posture (she types while realising she's slouching!) and a change in meds has made a huge difference. Definitely need to make sure your desk/computer etc all at right angle and if you're a student, occupational health can help with all of that for free!
Are you in Cambridge, UK....as I am too?

Jenny

Welcome to our little page in this big world.

Your writing is all to familiar to us.

Jo*mar gave you good advice.

10 years and rolling for me. TOS is a hard condition to get diagnosed and appropriate treatment tailored to your needs. I guess that's the hardest part. It is an individual thing. What worked for one don't necessarily work for another. It is frustrating for a good doctor too.

Just hitting the highlights of help I have found. You can read my posts, as many others here, if you have the upright time.

I am a court reporter and keyboarding is the way I make my living. TOS has made my job very painful. No doubt in my mind about that. I'm not sorry I stuck with it, but I stressed my profession to the max.

Right now, 10 years later, still working in articulating arm supports. I do remove them, as they're very aggravating at times, (when I don't need them, they're in the way and flop around) but I have to always put them back up.

POSTURE! My bad. Hunched over a keyboard is BAD for anyone. TOSers, well, it's definitely a positive pain producer. You must pay attention to your posture.

I have placed a long dressing mirror to the side of my workstation. I call it my Posture Police. It has helped me tremendously.

LED and infrared light therapy pads. They are pricey but has gave me the most relief of anything I've tried and paid for. It gets expensive to buy and try things. Here's a link : http://www.healthlightz.com/ long story short, I can sell them too, just too busy with court reporting right now.

DRIVING: short distances only - use pillows for propping your arms up. Still a problem with long distances.

Hairdryer on a stand. Raising arms up caused me problems with TOS.

Laser hair removal. Costly, but I'm worth it. A razor and a toothbrush was very painful and challenging for me.

Here we have Schwann's Foods. They come to your home and will put it in the freezer and refrigerator for you.

One-Touch can opener. Although with my scalenes and thumbs, it's still a problem.

Miracle Ball Method. http://www.google.com/search?source=...+Ball&aq=f&oq= Wonderful. I've had to deal with neck and back issues too.

Kinesio Tape. Helped a lot. http://www.google.com/images?hl=en&r...og&sa=N&tab=wi if it's too tight, it can cause muscle spasms.

Yoga, relaxation and breathing techniques. Must learn...

I discovered that keeping my upper body fleece warm cuts down on the intensity of my pain level. Kind of funny in the summertime.

Inhale water. It flushes toxins, especially after therapy.

Do not stay in one position too long. I know that's hard when you're on task with studies and everything, but it will keep the pain monsters at bay.

I had 7 1/2 years of hell. These last few are very good as time rolls by.

Don't give up and don't give in. You do have to mentally overcome it too.

Depression, well, you have a lot to be depressed about

Life keeps coming at you.

Please write to let us know your most pressing challenges. We've been there. Don't worry about correcting the mistakes when typing. We'll get it or ask you to clarify.

We're here for you

Thank you SO much Jo*mar, Jenny, and (BrokenWings) for your messages. It means so much to me to connect with others who’ve are dealing with the same thing (and makes me feel like I’m not crazy).

I am new to sites like this, but I’ll definitely try to find all of your earlier posts to learn more. Also, thank you for all of these great tips. I love the hairdryer idea (was thinking of just cutting my hair off soon to avoid having to dry it but I like how it covers my scars ), the idea of a mirror to serve as posture police and will look into some of the pain management/therapies you mentioned that I’ve not heard of (Miracle Ball, light therapy pads, kinesio tape). I brought up tissue adhesion with my osteopath today, but he didn’t think I had that. I’ll still look into it more though.

It’s so interesting that all of you are stressing the importance of good posture—when I bring up the idea that my TOS and current pain are related to computer use/posture, all of my doctors (aside from the acupuncturist and occupational therapist) seem to think it’s less important. I use to be a competitive swimmer growing up and in college. But that was 6 years ago—they all seem convinced that my blood clot/TOS was from years of swimming and when I bring up limiting my computer use and how I work on the computer 12 hrs+ a day, or how I feel better when I take a break, they seem to find that irrelevant---it’s frustrating.

My most pressing challenges:
1. I feel like I’m a 26 year old in the body of an 80-year-old. I wake up and my neck hurts and then it hurts on and off throughout the day. Sometimes the pain is just on my sternocladomastoid muscle over my surgical site and other times it’s my whole front chest area, backs of my shoulders or upper back. It often seems related to the chair I'm sitting in, as in a class with an uncomfortable chair my neck seems to hurt even more. It usually bothers me most at the end of the day, and the only thing that feels good is to bend over and put my head between my legs. I’ve started sitting on an exercise ball, bought a new ergonomic chair, and also have created a standing workstation at home and at my office so I can work on the computer while standing up which helps some.

2. I'm so sensitive to carrying even light amounts of weight. It freaks me out. My husband and I were thinking of starting a family soon, and I don’t know how I’d do with carrying any extra weight, yet alone constantly carrying around a heavy kid! For example, I carried a backpack that had maybe five or 10 pounds of material in it for a few five-minute intervals between buildings and felt terrible for days afterward. Sometimes even my winter coat feels so heavy on my shoulders that I find myself darting into stores to take my coat off to give my shoulders a break. I bought a bike (I live in a city where there’s not much parking) to avoid carrying my backpack, but now that it's starting to get colder, I'm not sure what I'm going to do. Simple tasks like cleaning our apartment or putting dishes away seem to wear my arms out. I don’t want to baby them either though.

3. My fingers and arms tingle and ache whenever I type or use a mouse. Even just for 10 minutes, I bought a new ergonomic keyboard and mouse which make it easier. But I feel my body is starting to reject typing on this equipment too. I have Dragon, but find it tedious to use since I constantly have to correct it. It's also an older version that won't let me search the web. So I'm thinking about upgrading, though it’s expensive.

4. My biggest concern is how I’m going to make it through next semester and whether I’m doing long-term damage to myself. I’m in a pretty intense PhD program and only in my second year of a five/six year program. I have a few weeks off and then it’ll be back to 80 hour+ weeks reading, writing, typing, transcribing, studying, etc. I purposely took a lighter load this semester, so I'd have more time to devote to taking care of myself, and yet I still feel I’m getting worse and not better. I spoke with my advisor about it, and she’s supportive, but I still have deadlines, finals, etc. which seem to set the pace and all the time I devote to my health makes me more stressed since I have less time to get my work done.

5. I’m afraid that I’m going to get worse and this pain will be chronic or get even worse (or my symptoms will continue to get worse since from reading the site, many people have worse symptoms than I do). I’m also frustrated as I’ve seen many great doctors, but no one seems to really get it (or me!). I agree that I need to start taking things into my own hands to figure out the right customize plan for my body.

6. I’m afraid I’m going to make my husband and I go broke the way I keep spending money on doctors, ergo stuff, yoga, meds, massage, etc. I feel like I am just throwing money at anyone or anything that might help out of desperation and it’s eventually going to run out (especially since I’m on a student’s stipend).

What I’ve tried:
1. 4 months of physical therapy which started out great (learned a bunch of shoulder/arm strengthening, opening, and stretching exercises that I still do every other day. I felt much better at first and had one week where I was pain free on a vacation a month into PT (when I stopped working on the computer). That’s the last time I was pain free (about 5.5 months ago). While my back pain was better, I started getting new pain in my neck area, particularly over the surgical site that still bothers me now nearly every day. The PT was stumped on how to heal the neck and I started doing neck strengthening exercises which irritated it more and the PT thought I wasn’t getting anything more out of it, so we ended our session (though I still do the original exercises every other day).

2. 3 months with an osteopath who I’m still seeing who put me on muscle relaxers at night (which at least helps me fall asleep as previously it took about an hour to fall asleep each night since I always felt so uncomfortable). I brought up today with him the kinesio tape and my hypermobility (per your comments) today and he may refer me to someone else if I don’t start showing improvement in the next two weeks who’s used kinesio tape before.

3. Limiting my computer use to 4-5 hours a day with ergo equipment/set-up (ergo chair, keyboard, setup, mouse, standing work station) an using RSIGaurd (a great program that forces me to take stretch breaks every 30 minutes or so depending on how much I’ve typed).

4. Light yoga every other day

5. Acupuncture every 2-3 weeks (1st and 3rd times didn’t feel any difference, 2nd and 4th times improved pain for a few days

6. I’m thinking of starting pilates to strengthen my shoulder girdle and core area—have a postural assessment for tomorrow—hoping that may be good. Has anyone tried pilates?

7. Also thinking of trying massage on a friend’s recommendation (though even more $...)


If anyone has any comments or advice on my top concerns or thoughts on therapies that have/haven’t worked for you that I’m also trying or pointing me toward sections of this website that might be helpful, I’d greatly appreciate it. THANK YOU again for your support. It really gave me hope today reading your messages to know that I’m not alone.

Thanks again!!
Julia


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On the massage, I think it will make you feel better for a short time, but to see real improvement you'll have to find an expert therapeutic masseuse.

If I was going to spend the money I'd seek out a expert bodyworker that will be able to help with postural corrections first.


I hate to say this, but I think 4-5 hrs per day are still too much computer time until you get these symptoms figured out an under control.

I had & have mild/moderate RSI/TOS & I truly believe I wouldn't have gotten the amount of recovery that I did if I was still trying to work.
I did assembly work - lots of reach, grip, twisting, static postures and lifting oh and speed...

With Dragon ( or any VR software I'm sure) a good mic & good sound card is very important - I have a old 1999 version of Via Voice and it still works pretty well when I need to use it -with but good sound card in computer & good mic.

Found this out first hand when I had a failed sound card got a cheaper brand and Via Voice did not work at all with it - horrible!
Got a better brand card and fine again. same mic both times.

On one of the other newer threads here I posted a link to many TOS videos and a bodyworker

Eric Dalton is one that sounds really interesting.
vids list -
http://www.google.com/search?q=Thora...vgc&hl=en&aq=f


Talk to school counselor or resource person?? - I know some with other pain conditions ( RSD etc) have gotten special help, extra time and assistance with classes.
You might need a drs note of some sort to verify restrictions.

WARNING - LONG POST -

I do stand at times when my duties will allow that to be efficient. My therapist got me a twist board, probably for my bday. here's a link for that. Alternating positions is a positive thing.

http://ballyfitness.com/rapid_result...stboard_ex.asp

...my therapist also wanted to try "glow in the dark Kinesio Tape" on me. She's funny like that. For a couple of years I could've been LiLu on the 5th Dimension... here's a link for that too http://www.google.com/images?hl=en&r...og&sa=N&tab=wi

Also I've used a Theracane for muscle spasms. I had to deal with a lot of muscle spasms in my whole upper body. ten years to tell about that. Long story short, about that not being able to get comfortable for sleep -- I had toooooo many areas --- but my ZANAFLEXES did not take effect until I had my cervical epidurals X3 in Feb and March of 2006. I slept the month of April away. My GREAT doctor in Louisville, Dr. Atasoy figured that out for me. (Auto accident in Oct 2000.)

I would recommend Dr. Atasoy to anyone with TOS. He offered surgery. I declined but he helped me in so many ways. I found him in 2004. He helped me discern neck symptoms from TOS symptoms from scalenes and so many other things. I really should send him a Christmas card for all his good care, wisdom and experience. You must find good knowledgable, experienced TOS providers or you're wasting your time and money and may cause you more pain and delay your rocky road to recovery time.

As far as work/keyboarding/sitting/earning a living... well, I know I caused myself a lot of pain, more intense pain, maybe even years of pain, but I'm glad I have managed to stick it out. I hasn't been easy and I truly have stressed my profession.

I don't think I could have pulled court reporting school off with all my problems. I had a problem staying upright for long periods of time (2 - 4 hours must lay down at a 45 degree angle) for about 7 - 8 years. Would have to pull over if driving, many, many times. Oh, the stories to tell about that.

Jo*mar is right about asking for help and extra time to complete course work. That may be your salvation.

You may need to talk to your doctor about school.

It is about conscience choices. You will be doing something... but what?

You're probably getting "winged scapulas" from TOS and poor posture. The Kinesio tape really helps you manage that. A strip of tape along about the bra line, a little higher. You get the idea. You would need an assistant to put the tape on your scapulas. I used to tape my upper body, arms, thumbs, shoulders, top of breast over shoulder and down as far as I could manage myself.

Shoulders rolled forward is another poor posture you must correct.

I used to put my right elbow against the wall and roll the tape over my left shoulder. Don't know if you can understand how and why I put my that right elbow up and against the wall but it worked at that time. I also did the elbow to shower wall, to reach the other side of my body farther.

I can only tell you from experience, bad posture = more pain. I promise.

I also use an oversized tennis ball for my lumbar spine and a miracle ball just above it, to help stabilize posture. Mind you, I don't do this all the time, only because I can't keep up with my balls.... Hubby gets a kick out of me collecting my balls. I'm always asking, "Have you seen my balls?" RITFLOL. You've got to have humor to get through it.

Carry small loads close/clutched to your body. Arm extended caused me MORE pain. I already had my equipment on wheels, but PUSH/PULL caused tremendous pain. Had to reduce my equipment weight. Struggled with that for years. Bought lighter weight, gave up paper ----- paper heavy to TOSers. Books... UGH !!!!

Oh, about Pilates... I bought it, the one with the arm strengthening ring, uh, 10 years later, I just started using it.

I used to say if I only had an "arm power meter" I could schedule things a little better.

For years I had e-stim and hot packs in PT. It would take both of their machines for my neck, upper body, arms, back, right leg. For years, that was the only way I could make it tot he grocery store, after e-stim. My first therapist used to say, "This reminds me of a hospital." My second therapist would reset it. I was hooked up and padded down, so I used my left foot and toes to crank up the juice. It wasn't fun.

You do what you have to do to get by

and that cleaning business, I wear invisible blinders. Don't bother me a bit. Hubby helps out a lot. He had to learn how to load and unload and put away dishes. I would try to put a coffee cup up and at shelf level, cup would just splatter. He figured out it was easier and cheaper to just put them away himself.

There's definitely adjustments and considerations to be made. You seem to be very willing. It'll be ok.

Prayer and devotion is also very comforting. For many years, in the wee hours of the dark mornings, it was just me, my dog and God... for years.

pentoxyphiline + vitamine e for 6 months

Thanks SO much for all this great advice and help Jo*mar, (BrokenWings) and boytos. I shared your posts with my occupational therapist today and it's definitely giving me comfort to know there are still other things for me to try and that you've found ways to manage your TOS. Looks like I just need to get creative and really get serious next semester about making recovery/taking care my top priority. Thank you again!!

Julia,

I'm sorry to hear you're experiencing pain post-surgery. I had a left rib resection and scalenectomy almost 6 years ago. I'm much worse than I was prior to surgery. I was a lawyer but haven't been able to work since 2003.

I urge you to limit your computer use. I cannot imagine how you can use it for 4-5 hours much less your usual 12. For me, anything that involves extending my arms -- cooking, driving, computer, laundry, holding a book, writing, most housework -- increases my pain. The only way I've managed the pain is to reduce or eliminate those activities. That and lots of pain medication.

Do everything within your power to not do activities that make you feel worse. With more time, eliminating the aggravating actions doesn't get rid of the pain; it's ever present. So do what you can now.

Good luck,
Kelly