Hi,

I am new to this site and just wanting to know others who can help me with what I am going through. I will tell you a short story if what is going on with me right now and why I am here.

I was a missionary to Africa, and when I returned home in June of 2007 I was hit with back to back surgeries. I had five surgeries in a fourteen month period.I had one foot surgery and then a week after foot surgery, I had major back fusion surgery, then I had a second neck surgery, and then I had a second back surgery to take out the hardware, then I had a third neck surgery to take the hardware out of the back of the neck.

Well right after the second neck surgery, I was having major pain in my neck between my shoulder blades and all around my shoulders into my chest walls, I was having headaches that started to turn into migraines, and then I was getting dizzy with any type of movement. I felt burning pain shoot through my right arm that ached. I had felt it also move into my left arm as well tingling numbness and burning sensation. When the weather got bad my whole upper half would hurt so bad all I could do was lay around and take pain meds. I had no idea what was happening to me.

I went back to my surgeon and we took an MRI and it turned out that I had another disc bulged above the four disc's that were fused and that I had TOS. I must say I was taken back going what in the world is that! I had never heard of TOS before in my life. My doctor was grieved because I had already been through to much.

well I went and saw a specialist and sure enough I had a sever case of it and now I have to go in for shots and a certain type of MRI. Surgery is now hi on the list of things.

Can anyone help me to understand this a little more and what did types of testings did you have to go through. Did you have surgery and what did they do in the surgery? Have you had relief after surgery?

Thanks
Jeanie

So sorry. You've been through too much already.

You are complicated and in trouble.

Lots of info here if you've got the time to research.

Not had surgery for TOS and scalenes, but struggling.

Lot of neck and back issues too. No surgery there either.

Is your neck and back stable now?

Hang in there.

What showed on the MRI that caused the dr to say TOS?
Was it an extra cervical rib or something else?

It is good to see you are getting a special MRI, most regular MRIs don't show TOS unless there is a structural anomaly.

With all those surgeries scar tissue can become an issue.
Some people will produce excess amounts and that entraps the nerves and such.

Hi welcome to our little club......
I can't believe you have been through so much!!
You must be, I suspect going for an MRI of your blood vessels to see if you have compression there....or to see more of the area.

One of the first tests to see if I had vascular tos was an ultrasound of the brachial plexus. I had total occlusion in 'provacative' positions. After that test I had a veinogram(more detail and more expensive--they start out cheap in Canada....and rightly so....why pay for an MRI if an ultrasound can give you the results you need) and they put a contrast dye into my veins and then took x-rays to see if there was compression. they made me go into 'provocative' positions ie: superman position...arms overhead to see the compression and sure enough 90% occlusion of the subclavian vein and artery. Not good....had to have first rib removed.

I had surgery July 2005. I had first rib removed and was post op diagnosed with neurogenic and vascular tos. I also had a scalene removed. Now I am a rare person with cervical ribs....ribs that come off your C-7 vertebra.
So that didn't help much....so 1st rib removed.....felt like I was run over by a train due to the bone pain....however I am guessing you have a pretty good understaning of bone pain. It felt like 100lbs on my chest all day long.
All went well and was rehabing at home doing simple tasks with no lifting and no overhead stuff....etc....
I came off all my narcotics ( I was on close to 300mg of morphine a day) and all my muscle relaxants and was totally drug free.!!!

I went to Physio in October and they ruined the surgery. I am now back to worse than before surgery. My best advice is make sure you PT knows what TOS is and call it TOS not the long term name cause if they don't know wht TOS is they won't have a clue how to treat you. I'm sure you have a good relationship with a PT due to all your surgeries.

Best PT advice.....no weights ever again....only light stretching until you can work up to yoga or something post op....no weights ever again.....sorry...(for me this was huge as I lifted wts before and was training for a marathon...work injury....tos....surgery....chronic pain....fibromyalgia....short version of events) I would also council not to use therabands ever they are sooooo bad for tos. Also no overhead stuff ever......and don't do any heavy lifting....which i am gonna assume you have been through precautions before due to your back and neck issues....

Hope some of this helps....my surgery did for sure stop part of the vascular tos...I still get a blue hand and it changes temperature and swells up now and again but not like it used to.

take care and ask away for more info!!! feel free to PM me if there is more you'd like to ask.

hugs,
Victoria
ps I am a disabled RN

[QUOTE=gibbrn;472477]Hi welcome to our little club......
I can't believe you have been through so much!!
You must be, I suspect going for an MRI of your blood vessels to see if you have compression there....or to see more of the area.

One of the first tests to see if I had vascular tos was an ultrasound of the brachial plexus. I had total occlusion in 'provacative' positions. After that test I had a veinogram(more detail and more expensive--they start out cheap in Canada....and rightly so....why pay for an MRI if an ultrasound can give you the results you need) and they put a contrast dye into my veins and then took x-rays to see if there was compression. they made me go into 'provocative' positions ie: superman position...arms overhead to see the compression and sure enough 90% occlusion of the subclavian vein and artery. Not good....had to have first rib removed.

I had surgery July 2005. I had first rib removed and was post op diagnosed with neurogenic and vascular tos. I also had a scalene removed. Now I am a rare person with cervical ribs....ribs that come off your C-7 vertebra.
So that didn't help much....so 1st rib removed.....felt like I was run over by a train due to the bone pain....however I am guessing you have a pretty good understaning of bone pain. It felt like 100lbs on my chest all day long.
All went well and was rehabing at home doing simple tasks with no lifting and no overhead stuff....etc....
I came off all my narcotics ( I was on close to 300mg of morphine a day) and all my muscle relaxants and was totally drug free.!!!

I went to Physio in October and they ruined the surgery. I am now back to worse than before surgery. My best advice is make sure you PT knows what TOS is and call it TOS not the long term name cause if they don't know wht TOS is they won't have a clue how to treat you. I'm sure you have a good relationship with a PT due to all your surgeries.

Best PT advice.....no weights ever again....only light stretching until you can work up to yoga or something post op....no weights ever again.....sorry...(for me this was huge as I lifted wts before and was training for a marathon...work injury....tos....surgery....chronic pain....fibromyalgia....short version of events) I would also council not to use therabands ever they are sooooo bad for tos. Also no overhead stuff ever......and don't do any heavy lifting....which i am gonna assume you have been through precautions before due to your back and neck issues....

Hope some of this helps....my surgery did for sure stop part of the vascular tos...I still get a blue hand and it changes temperature and swells up now and again but not like it used to.

take care and ask away for more info!!! feel free to PM me if there is more you'd like to ask.

hugs,
Victoria
ps I am a disabled RN[/QUOT



Hi Victoria,

This has all hit me by storm. You are so helpful. I am so sorry you had to go through all that as well it is no fun for anyone.

The doctor mentioned those test you had spoke of that I will also go through the search seems to be now to see where is is compressing. My doctor also mentioned Fibermialga how ever you spell that and I am trying to learn more about that too. I tell you when the weather is cold my whole body feels so much pain that I have to take pain meds. I am sad as I too am athletic.

Anyway if there is anything else I should know please let me know. I do not know anything about the rib and the other things you mentioned. By am I new at this!

Hugs
Jeanie

hey Jeanie,

I have been through hell and back.....only to help others!! I must justify it tht way or i'll go crazy!! Depression is a huge issue you need to be weary of. We lose so much from TOS that we have grief as if our lives have been totally removed from us...we loose ourselves!!

Please post any questions you have as you can see there are lots of AMAZING people here and all have a piece of the puzzle we each play with every day. I hope more people let you in on their stories if they are able so you can gain more info! Oh and there is NEVER EVER EVER A DUMB QUESTION HERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Can't stress that enough can you tell?
Take care and try to keep warm. That helps me a lot. I have to keep my house at 75-76 degrees all the time to be warm enough...even in the summer if it is cool out I need the heating on.........so maybe try heat increase in your house (if you can afford it.....it costs a fortune here esp when it is -30 Celsius here in Calgary, AB, Canada) Just a thought. It really has changed my life....I keep a space heater in the bedroom close to the leaky windows(of air I mean) and try to keep the room warm. I have heating pads everywhere I go unless I get a migraine then it it instant cold pack on back of the neck and hypnosis dvd MP3.

just a couple more tips!!!

take care
love and hugs,
Victoria

I noticed that I cannot tolerate cold at all. I am always freezing and it used to not bother me. It must be the TOS. I love heating pads. I just wish I could find a good one.

Hugs

Uh, you're lucky there. when my pain has kicked into overdrive and my migraines visit, well it's no light, no sound, no nothing...

I dress my upper body warmer, or use throws like shawls around my scapulas, neck, shoulders and pecs. (fold throw like triangle)

"Snuggies" work the best for lounging around. not good for moving around. Will shed in a way when I get up so I can come back and slip it back on, even if I have a throw over it too. Then I wake up at night, in a sweat because of too much bulky hot covers. can't keep it tweaked just right. I get weary of trying but forced to adjust.

And even with the Snuggie, I can still get cold and have a spike in pain intensity. Taking a hot shower can warm that coldness up. Helps if I shower before bedtime. don't deplete arm power by toweling off. Keep the bathroom warm and have used dryer on a stand to blow dry my back, especially if I have Kinesio tape on. I let it absorb with towels on the floor, chair or robe. skin may need to absorb water too. sooo water is good on the outside too.

I do like the comforting feeling of a heating pad, and the pain relief too, but it will cause tissue swelling, on a microscopic basis.

To a point, it's pathetic how our lives are altered. we still have to take care of responsibilities, to some degree. doing those we can do are challenging. Not being able to take care of things the way we want is a compound of bad effects. Not easy to let go of so much.

I do know I'm lost in the TOS of things. It just affects so many facets of my life. A constant struggle for balance.

I'm looking forward to spring, the freshness, the new. I want to plant something and watch it grow. Take care of it the best I can. Last spring I selected flowers for my patio that were not so delicate and needy. And for the past two years I've been blessed with tomatoes, and last year with a good garden. Hubbie helps, but I done more than I ever thought I could. : And yes, by fall I was hurting top to bottom and had to let it go early. I am stronger so I can go longer this year, Lord willing.

Oh and if you didn't see our useful sticky thread here is the link to it-
lots of condensed info for TOS-
http://neurotalk.psychcentral.com/thread84.html

I have some questions about your ultrasound & MRI. Are you saying that they had you put your arms in a "superman" position for both of these tests? With the ultrasound did they have you hold the position or did they just take a reading as you passed through positions while moving?