[o2bponca]

Hello to all !!!

My name is Carrie. I was recently diagnosed with Thoracic Outlet Syndrome on the left side. My angiogram showed complete arterial and venous occlusion with arm abduction - and also nerve impingement, all caused by the clavicle and first rib butting up against each other.

My follow-up appointment with the vascular surgeon is not for two more days, but he did say after the procedure that the only way to fix it was to remove the first rib. This is very concerning as I am a wife and mother of five. I run too small businesses, one of which is a transcription service (typing, typing, typing!). From what I've read so far, this surgery is debilitating with an extensive recovery period - also, I may not ever be able to type again. IS THAT TRUE?

I realize that everyone's experience is different, but I'm trying to come to a general consensus in deciding whether or not to proceed with such a drastic measure. Dr. says the alternative is blood clot(s) and possibility of stroke and/or other life-threatening conditions.

Right now, my symptoms include moderate to severe shoulder pain, complete arm aching and heaviness, numbness and tingling in my hand (especially 3rd thru 5th digits), and weakness in that arm (also, pain when I life anything with it, or "tweak" it in the wrong direction).

Does anyone have a similar situation? I'd love to hear from you. Don't know who to talk to as my Dr. says the condition is relatively rare and, in fact, he refuses to perform the surgery because he doesn't have enough experience with it. He is referring me to another surgeon in Orange County (California). Does anyone have ideas for GREAT surgeons for TOS in that area (or L.A., Riverside, San Bernardino, or San Diego Counties)? I've heard there are good docs at UCLA for this, but don't know any names.

Looking forward to any and all responses,

Carrie

[(Broken Wings)]

Hi Carrie,

I too keyboard for a living (stenographer/court reporter). I love my job. You're going to have problems. TOS and keyboarding is not good. I can't think of a job that would be easy with TOS, though. Most TOSer can't work because of their symptoms and the condition TOS can put you in. Self employed TOSer may have a better shot at keeping their job. Before TOS I used to drive anywhere in Kentucky my clients would request. Well, after TOS I had to give up driving long distances pretty quick. I don't report for federal court anymore. I don't take jobs that are over an hour and a half travel time, one way. I didn't take all day jobs for many years. I can do that now. I did make changes in the way I do things. I closed my office down and moved my office into my home. definitely something I didn't want to do. But you know, God has taken care of me in spite of my fool self. I started getting calls for more local work. Income has changed but not drastically. you're probably thinking more about you not being able to provide service to your clients right now than the actual potential loss of income, but sorry to say things will likely change with both for a while.

During this period of trying to figure out what to do, explore all options, even being off keyboards for recovery, either with surgery or no surgery. I wasn't in as much pain when I tried to not work for a short while. I've struggled and suffered and stressed my profession to the end of its rope and fell flat on my face many times, but I'm still working. Definitely challenging. After 8 years I'm still working. I thank God for that. I have improved and it has gotten a lot easier, but never a day without the reality of TOS surfacing. I would work one problem out only to be faced with a couple more problems.

Your condition may require surgery. I don't know. Some surgeries are successful. Some are not. Serious things to think about. You're family and children will have to help you though this. I've found writing a list of "Things to Do" gets things done around here better than me waiting for everyone to do what I want them to do, or do what they're supposed to do. They can't read your mind nor will they know how to do things if you don't tell them.

There are some good tips on this forum. I'm being very open and honest with this forum. Hopefully we can all benefit and find comfort in support from others who suffer so much with TOS. I know I have.

I look forward to hearing from you.

[mtnmom]

Welcome Carrie,

I would advise you to get a couple more opinions from experienced doctors in your area. I believe some of the people around here have seen (and had surgery) with a few of the doctors in southern California. A good doctor is essential to getting you better - whether it be surgery or other alternatives. While you dont want to mess around with the chance of a blood clot, it sounds as though you may have some time to weigh your options? TOS is a complicated condition, and everyones situation is unique and deciding whether to have surgery is a big decision...

Keep us posted as to what the doctors say and who you see. I will be interested to see what the doctors say!

[JennyH]

Hi
I'm glad you've found this forum to help you get more information about surgery. I've been visiting it for a while post-op and there is so much support - and more information here, especially if you search the forum. Only wish I'd found it earlier.
I was in your situation just over three months ago - and had my first rib resection. Everyone's experience is different but for me I feel like I'm getting my life back again. Post-op is tough and you will need support, especially for the first month, and really good physiotherapy - but I'm already leading a more normal life, able to swim, type and even back at work. I still have pain and get tired but I'm improving all the time.
Thoracic outlet syndrome is such a mix of symptoms and signs, but if you're compressing the artery like I was, then I suspect most doctors will recommend surgery because of potential complications. It's really important you trust whoever you see and that they know what they're doing - I'm based in the UK but I know there are links to good drs in the US from this forum.
Take care - and if you've got any other questions, I'd be happy to share my experiences
Jenny

[(Broken Wings)]

Get well wishes for you. You're a trooper.

Originally Posted by JennyH

Hi
I'm glad you've found this forum to help you get more information about surgery. I've been visiting it for a while post-op and there is so much support - and more information here, especially if you search the forum. Only wish I'd found it earlier.
I was in your situation just over three months ago - and had my first rib resection. Everyone's experience is different but for me I feel like I'm getting my life back again. Post-op is tough and you will need support, especially for the first month, and really good physiotherapy - but I'm already leading a more normal life, able to swim, type and even back at work. I still have pain and get tired but I'm improving all the time.
Thoracic outlet syndrome is such a mix of symptoms and signs, but if you're compressing the artery like I was, then I suspect most doctors will recommend surgery because of potential complications. It's really important you trust whoever you see and that they know what they're doing - I'm based in the UK but I know there are links to good drs in the US from this forum.
Take care - and if you've got any other questions, I'd be happy to share my experiences
Jenny

[o2bponca]

Jenny -

While I'm hopeful there are more to be found, your post is the first relatively optimistic one I've read. Thank you so much!

I'm really glad that you are improving and hope my outcome will be just as encouraging.

If all goes well with my surgery (or alternative), I'll be visiting London for 8 days in April for a family retreat. Also, in January, my mother-in-law will be going to Leeds for about a year and a half. Do you live anywhere near either?

Hoping to find some type of support group here close to home. Of course, I don't know anybody in my circle of family or friends who has ever heard of TOS - and most doctors haven't either!

My angiogram procedure was actually a little unique, they say, because all of the nurses and techs had to have the vascular surgeon explain my condition before starting the test because none of them knew what it was or what they were looking for. When they put my arm over my head and re-injected the dye, I could hear a sleuth of "Oh, my gosh," "Look at that," "I've never seen anything like that," remarks. Because I was "twilight" sedated, nobody really talked to me about it after that.

My angio was on Nov. 19th and I've had to wait thru the holiday for my follow-up, so naturally I've been a little anxious. Hoping to get some answers tomorrow, although Dr. already told me he will refer me out to another surgeon - so I'm not expecting much.

We shall see!

I hope you continue to improve and feel better every day. Thanks again!

Carrie

Originally Posted by JennyH

Hi
I'm glad you've found this forum to help you get more information about surgery. I've been visiting it for a while post-op and there is so much support - and more information here, especially if you search the forum. Only wish I'd found it earlier.
I was in your situation just over three months ago - and had my first rib resection. Everyone's experience is different but for me I feel like I'm getting my life back again. Post-op is tough and you will need support, especially for the first month, and really good physiotherapy - but I'm already leading a more normal life, able to swim, type and even back at work. I still have pain and get tired but I'm improving all the time.
Thoracic outlet syndrome is such a mix of symptoms and signs, but if you're compressing the artery like I was, then I suspect most doctors will recommend surgery because of potential complications. It's really important you trust whoever you see and that they know what they're doing - I'm based in the UK but I know there are links to good drs in the US from this forum.
Take care - and if you've got any other questions, I'd be happy to share my experiences
Jenny

[gibbrn]

Hi and welcome to our little sanctuary!

I had vascular...and neurogenic tos. I had to have surgery due to the compression of the subclavian blood vessels. You are at large risk of stroke if you are using the arm and you kinda have to I'm assuming!! Vascular tos is not something to wait on and I would certainly agree to a second opinion. However in saying that if your vascular surgeon won't do it he is a good doc. He knows his limits and won't do what he isn't comfortable doing. That is a really good thing.

Hopefully some of the other tosers will let you know who to see for surgeon's names and where to go to for help.

Have you had an ultrasound of your brachial plexus? This would be your first indication of a vascular problem. If you have vascular involvement it willl most certainly show up on the ultrasound.

i hope you hear from some of the Cali gals soon!! They will definatly guide you in the right direction doctor wise!!

take care and again welcome,
hugs,
Victoria

[o2bponca]

I haven't had an ultrasound, but an angiogram is supposedly one step up as it uses special xray technology and contrast dye to watch the flow of blood in real time. You could actually see the dye flowing through the blood vessels (well to a certain point, of course, where it just STOPPED - where it shouldn't). Doc said that usually at least some blood gets through, but, in my case, none could - at least on the left. Right side was better, but I'm not sure how much better. Will hopefully find out today.

Already got a few names of good doctors near me. Will see who my doc refers me to today and go from there.

Everyone here has been awesome.

HERE's TO A SPEEDY RECOVERY FOR ALL OF US !!!

Carrie

Originally Posted by gibbrn

Hi and welcome to our little sanctuary!

I had vascular...and neurogenic tos. I had to have surgery due to the compression of the subclavian blood vessels. You are at large risk of stroke if you are using the arm and you kinda have to I'm assuming!! Vascular tos is not something to wait on and I would certainly agree to a second opinion. However in saying that if your vascular surgeon won't do it he is a good doc. He knows his limits and won't do what he isn't comfortable doing. That is a really good thing.

Hopefully some of the other tosers will let you know who to see for surgeon's names and where to go to for help.

Have you had an ultrasound of your brachial plexus? This would be your first indication of a vascular problem. If you have vascular involvement it willl most certainly show up on the ultrasound.

i hope you hear from some of the Cali gals soon!! They will definatly guide you in the right direction doctor wise!!

take care and again welcome,
hugs,
Victoria

[Jomar]

Do you have a lot of arm or hand swelling?
That usually indicates more of a vein related compression.

My arterial pulse stops when my arms are elevated or pulled back to certain ROMs, but I don't seem to have any vein involvement. A percentage of the general population will have the blood flow stopped also at certain extreme range of motion {ROM} - but they would be non symptomatic of TOS.
I only had minor swelling during my worst time.

I managed to get beyond the worst of my symptoms without finding a "TOS" doc, my chiro & a couple of very good PT people worked out great for me.
-one thing my chiropractor told me was that clots are more likely to happen if the vein is involved and it's less of an issue for artery blood flow. I don't know if that is true or not though.

You may want to talk with a Vascular doc and get some more in depth knowledge about the vein/artery connection.
I thinks some had venous compressions most of the time at all arm positions - they were the very serious cases and some had clots and that was how they were dx's at the time.

Did you find our useful sticky threads {TOS drs & PT, & useful info} above our main TOS page thread list?
TOS main page -
http://neurotalk.psychcentral.com/forum24.html
tons of saved links, polls, important threads, videos, collected in those stickys - browse thru them as you have time.

PS
posture is a main issue to start working on - you are hurting and the next thing you know you are slouching or hunching to relieve the pain and it become s a bad cycle of worsening posture = more pain & problems.

Sharon Butler {book or website} has some great at home things that are very helpful.
we have posts & threads if you do a forum search on her name they will come up for you.

[gibbrn]

Originally Posted by o2bponca

I haven't had an ultrasound, but an angiogram is supposedly one step up as it uses special xray technology and contrast dye to watch the flow of blood in real time. You could actually see the dye flowing through the blood vessels (well to a certain point, of course, where it just STOPPED - where it shouldn't). Doc said that usually at least some blood gets through, but, in my case, none could - at least on the left. Right side was better, but I'm not sure how much better. Will hopefully find out today.

Already got a few names of good doctors near me. Will see who my doc refers me to today and go from there.

Everyone here has been awesome.

HERE's TO A SPEEDY RECOVERY FOR ALL OF US !!!

Carrie

Hi Carrie,

Well an angio is proof positive of vascular tos. Be careful please with this and don't wait around for docs. Make sure you can be seen asap.

I just don't understand why they do the angio before an ultrasound. It seems to me that doing an angio which costs so much money is the second test to do AFTER doing an ultrasound which is lower in cost.
does not compute!!
just me commenting on your medical system.....but then what do I know it takes me sometimes years to see doctors here in Canada so perhaps I should keep my nose out!!!

take care
love and hugs,
Victoria