Hi newbie here...
 

Hi everyone...I am so glad that I found this forum.

I guess I should start with telling my story...In 2005, I began having problems with my neck and very severe pain between my shoulder blades on the right side. I went to chiropractor and he did the best he could and finally told me I needed to see a specialist. I did and I went through many tests, the pain was so severe I was taking 2 - 1000 mg Vicodin and Flexaril every 4 hrs not touching the pain. Finally on Dec. 23, 2005 I went into surgery they removed C6 and fused C5 - C7 with a metal plate going through the front of my neck. 5 months later I was getting ready to return to work. A week before I was driving and stoped at a Red light, the light turned green, I started to go but saw a car coming at very fast speeds out of the corner of my eye so I stoped..my wheel didn't even go over the white line. It was 2 boys that had stole a car and ran into me going 95+ mph. I suffered a dislocated left arm and lots of cuts and bruises.

The pain in my neck came back so I went through alot of physical therapy and nothing worked. I also went through alot of MRI and CT Scan's. Finally the doctor said we have to go back in. Nov. 2007 I went back in and he put a rod in the back of my neck. This made things worse. Physical Therapy was a waste of time because all they did was take big ice blocks and do ice block massages because of the swelling that never went down and I still have.

All this time since the accident, I kept telling the doctor's look at my chest on the right side it goes in and their is swelling and my collar bone looks huge. No one paid attention, they kept saying it was because of the surgery and the swelling. After my second surgery when I woke up my index finger was numb/tingly. They said that would go away. It got worse the tingly/numb feeling went also into my thumb and middle finger..then my hand cramps up even when doing the littliest things like opening my blinds. I also had trouble breathing I was put on an inhaler and still use it every day.

I can't do anything it hurts to lift my right arm..I've had numerous cortizone injections that help with the shoulder pain for a couple of days then it comes back. Still all this time my concern is my chest seems like that area is caving in more and more each day.

Aug 29, 2008 they took me back into surgery to remove the rod. They thought maybe a nerve was touching one of the screws. I came out of surgery still same symptoms. Doc said it should go away.

On my post op visit I was talking to him and I also mentioned that in 2001 I had an enchondroma tumor removed from my right humerou..he said let's send you back to your specialist for evaluation. Just to make sure the tumor hasn't returned.

I went last week and he took xrays and said no the tumor has not returned but I think you have Thoracic Outlet Syndrome. I said ok..finally someone is helping me here..I said good so what do I need therapy??? What..he said I wish it was that simple actually you need to have your first rib removed...I was like oh god not more surgery..My body already looks like a road map..

I have to go and get all the MRI's, CT Scan's Xrays that I have had done, he wants to see if there is anything on them..if not then he will send me for some testing just to verify his diagnosis.

I am nervous about all of this. I asked him if he thought it was from the car accident but he said he didn't know yet..could it be the car accident or from my first cervical spine surgery....

I lost my job after the car accident because I was only cleared for right hand work only and my job said we don't have anything for you. I have been collecting wage payment from my car insurance but as of May of 2009 it will end. I recently was told by my car insurance that I had to apply for Social Security Disability. I did that and had my phone interview..this was before I went to my specialist. I guess if his diagnosis is correct I will call Social Security and give them my newest diagnosis also.

There are some things that I've had and just wondering if this also falls in with TOS...My lymph nodes get enlarged on occasion the ones by my ears. I also have just behind my ears sores that come up and seep fluid. A couple of weeks ago I woke up and was unable to touch my teeth together they hurt so bad. I also have the chest pains, feels like my heart is running away with itself, blurred vision, dizziness, shortness of breath and I am tired all the time.

So that's my story...did any of you have the area in your upper chest just below your collar bone that caved in and then the swelling that extends up to your shoulder? Does your collar bone look really big compared to the other collar bone?

I look forward to reading more of your posts and reading any replys.

Diane

Wow Diane. You have had a hell of a time. I admire your strength and resolve. I hope you check back in often on this board and become a member because it is soo helpful and is a wonderful support system. I am glad you found us :hug:
I have not experienced the swelling that you mentioned but just recently another member, Fern, posted a thread on lympedema (here: http://neurotalk.psychcentral.com/thread54603.html) And I can't help but wonder if that may be what's causing your swelling as TOS can cause it. The Online Medical Dictionary defines it as such:
lWell that's a jump off suggestion. Let's see what others have to say. Take care!

Thank for the reply..well I did register and I did get a welcome email..so does that mean I am a member...:)

I will look into that post you included. This is all so new to me. The tumor part scares me. I had a enchondroma in my right humerous back in 2000, it was removed in 2001..so because my swelling is on the right side not far from my humerous I do fear it has come back in a different place. That is something that enchondroma's do...

I plan on being on here everyday and I will keep your posted to what the doctor's find out.

Thanks for the warm welcome....

yep. you are a member. still on the new side, but just as important as an old yappy one like me.

welcome to neurotalk. let me know if you need any help around here.

welcome dlluvspigs!
:welcome_sign:

Thank you everyone, I am sure that I will learn alot about TOS so that I am prepared when I go through tests and get the final determination.

I look forward to getting to know you all more.

Hi Newbie....I can't type much these days (flaresville) but wanted to say welcome !

Hello dlluvspigs,

It's great that your one dr thought of & suggested TOS.
Car accidents/whiplash set you up for it quite often, and with your neck surgeries kind of adds to the mix.
You may want to research on scar tissue, your body may produce higher amounts than normal. Often that can cause adhesion/impingement on the nerves and muscles.
scar tissue after surgery- info links -
http://www.google.com/search?q=scar+...broad-revision

[the chest pains, feels like my heart is running away with itself, blurred vision, dizziness,]
I had bouts of these during my worst times, I was also on Lipitor at that time so it may have played a part with some of the dizziness/vision problems. I also had concentration/cognitive problems and was very sensitive to too much going on around me.
Like family gatherings or shopping in a crowded store- just disoriented me and was very draining.

did you find our useful stickys up above the main thread section?

G'day dlluvspigs!

Well TOS isnt a nice thing to have but this forum is a nice place to be! I too have C5/6/7 issues with nerve probs. I was also diagnosed with TOS in 2005 (venious and arterial doppler ultrasound tests both positive for TOS). I get a lot of swelling in my hands, neck, fingers and arms. Some heart palpatations (but not sure if this is caused from all my meds Lyrica, valium, panadeine forte!) One of my worst complaints would be chronic headaches with face / jaw pain. It drives me insane from the minute I get up in the morning. It has been suggeted to me to have 1st rib removal but not too many TOS Dr's in Australia and I have read some good and bad stories so for the time being I am just going to sit and wait. I do need to have my C5/6/7 discs fixed though, but im a bit scared! I have some trouble understanding some USA sayings, meanings, workers comp issues, medications etc but eventually I get there.

This is a great place you have found and you will find more information on here than from your Doctors!

Sorry that you have TOS but welcome.

Ozzy (Lisa)

hi
 

Just want to say hi and welcome. You are in a good place here with fellow suffers...sorry you are here but if there is a question you will hopefully get the answers you need. We all have varying degrees of knowledge and are really good at working as a team to try to help you solve things.

You have been through the ringer!!!! I can't believe it!! you must be one strong as hell person to have to have been through it all.

Some of your symptoms sound tos like. I am concerned about your pushing out of your collar bone and the swelling. it could be due to compression of vessels in your brachial plexus. It sounds like lymph drainage issue on your neck and behind your ear leaking. It must be so swollen that it has nowhere to go but out through your skin. I have seen this with lymph swelling in my nursing career.

You could have had some form of compression since the car accident and then the first surgery could have contributed even more to the compression of the brachial plexus. It is soooooo hard to say what the contributing factors are NOW it is a very difficult thing to have answers handed to u about it.

I hope we can help you in some way. Have you looked through our doctor lists in your area to find good treating doctors?

keep posting we are always here when we can be.

welcome again,
Victoria:hug:

Thanks for the responses.

Lisa, my first surgery that I had, they took out C6 and put in a metal plate and screws fusing C5 and C7. they went through the front of my neck and I gotta say it wasn't bad at all. I did wear a collar for several weeks and then a bone stimulator 4 hrs a day. I then went through physical therapy. I think the problem with such a slow recovery was my incision. My body rejects the disolving sutures and this last surgery they used staples and my body didn't like them either. So I developed an infection and my incision opened up a little..so it took time to clear that all up. But I was released to return to work about 4 or 5 months after that first surgery and I did feel wonderful. Well until the car accident..:)

I believe this newest problem is also related to the car accident but that is something my doctor will have to prove because the car insurance has to have proof before they will pay for anything. In the meantime my husband's blue cross will pay and if it ends up being car related then my car insurance will have to pay blue cross back..this has happened on a few things now.

The seat belt injury caused 3 very large masses to appear on my chest. When I first found the masses it scared me because they are right by my left breast. But after biopsies they turned out to be fat modules caused by the seat belt injuries...Blue cross paid for this and I tried to fight it with the car insurance but I didn't win on that one... it drives me crazy that you pay out very high dollars for car insurance and then they don't want to pay anything out when you get injured. Everything is a fight with the car insurance companies. They now have told me I had to apply for social security disability, I did apply a few weeks ago but this was before seeing this latest doctor. I guess if it turns out that I have TOS I will let Social Security know about it. It takes a long time for Social Security to make a decision.

I will try to post somewhere a picture of myself that shows the way my chest goes in and my collar bone is very big on the right side and swelling. I have a picture that was taken recently by my husband..I hate getting my picture taken, but I have an Eclectus Parrot and I was holding him and my husband took a picture. It was late at night and I was getting ready to go get ready for bed..so it's a really bad picture...:) I'm new at this posting but I think I saw a photo album I can upload to.

I have to be the strong one through all of this my husband panics about everything..some days it's really hard because I feel so horrible but I try and always have a smile on my face so he doesn't worry about me. He has enough going on..his company is closing and he will be getting laid off permanently within the next few weeks. He will be 55 and he is scared no one will want to hire him.

I don't know if I mentioned this but in 2000 I was diagnosed with a bone tumor in my right humerous they kept telling me it was bone cancer for a year I went through all kinds of tests and was told we can not do a biopsy because it is in a sac. Finally in Dec of 2000 the doc said it has grown so much we need to get it out right away and the pain was really bad. I told him it will have to wait until after the holidays..I had been through enough that year at least give me the holiday with my family. I went in on Jan 28, 2001 and the tumor was alot larger than they thought. Turned out it was an Enchondroma..thank you jesus....that was the most painful recovery that I have ever been through. So I also wonder if there is something like scar tissue issues from that surgery. My incision is right where my chest and my right arm join...same side that I am having trouble with now. They had to cut through everything to open me up and make a cut into my bone to get the tumor out. I guess I will find out soon....