Thoracic Outlet Syndrome Support Group
Thoracic outlet syndrome (TOS) consists of a group of distinct disorders that affect the nerves in the brachial plexus (nerves that pass into the arms from the neck) and various nerves and blood vessels between the base of the neck and armpit.
Hi All,
I am new to this group and looking for some advice. I have not actually been diagnosed with tos but I am trying to get info as to what type of doctor should diagnose me with this - Orthopedic or Vascular?
I am a 28 yr old healthy female. I had surgery for my scoliosis back in 1999 when I was 16 and had Harrington Rods placed. In 2002 I had the lower portion removed, as they were causing irritation.
I have the usual back aches and pains as expected up until this point. Around a year ago I started working out pretty extensively as I was getting married and wanted to get my body into shape. I did a program called the P90X twice, which may have been too much for somebody with my previous condition. I also work in an office and sit in front of a computer for 8 hours a day - with not the best posture in the world.
I woke up June 26, 2010 and I feel as if my world has been turned upside down. I woke up with my neck bent all the way back and to the left side and a terrible headache. I went to the ER that day with heart palpitations, difficulty breathing and a feeling like I was not getting enough blood flow anywhere in my body. They sent me home telling me I had a panic attack - although I have never had anxiety a day in my life.
I have since been to more ER's and numerous specialists and primary doctors. I have seen a cardiologist, a pulmonary dr, a neurologist, ents, and even a gastro - as I recently have an uneasy feeling in my stomach with digestive issues. All doctors tell me I am perfectly healthy.
About a month ago I noticed that the veins in my arms, chest and neck are now very prominent where they never were before. I get aches and pains. I am cold all the time. My hands and fingers look purple. I have terrible neck pain radiating into my throat and esophagus area. Most recently my vision has become extremely blurry and my eyes are always blood shot.
Perhaps what has scared me the most is my jugular veins. I know that they should distend somewhat while lying down but even as I got to lie down I feel as if I can actually grab on and take a hold of them (on both sides).
I need muscle relaxers or Klonopin in order to even think of getting to sleep. Otherwise I have insomnia or my eyes and nerves are twitching so bad that I feel like I am falling at the point just before I am about to fall asleep.
I saw an Orthopedic Surgeon about a month ago but all he did was take xrays of my rods in my back and told me that they looked like they were holding up ok. I recently came across some information about tos.
Should I go back to this doctor for a diagnosis or should I work with a vascular or my primary doctor? I feel like both my nerves and my veins are involved.
I am sorry about this ridiculously long post. I am just so incredibly sick and tired of feeling like this. Everyday I fear for my life. This is affecting my job. I am a newlywed and I cannot enjoy anything about life at the moment. Thank god for my husband - as he has been my backbone throughout this whole thing.
If anybody has any advice or any suggestions I would really appreciate them.
Thanks so much :)
I am new to this group and looking for some advice. I have not actually been diagnosed with tos but I am trying to get info as to what type of doctor should diagnose me with this - Orthopedic or Vascular?
I am a 28 yr old healthy female. I had surgery for my scoliosis back in 1999 when I was 16 and had Harrington Rods placed. In 2002 I had the lower portion removed, as they were causing irritation.
I have the usual back aches and pains as expected up until this point. Around a year ago I started working out pretty extensively as I was getting married and wanted to get my body into shape. I did a program called the P90X twice, which may have been too much for somebody with my previous condition. I also work in an office and sit in front of a computer for 8 hours a day - with not the best posture in the world.
I woke up June 26, 2010 and I feel as if my world has been turned upside down. I woke up with my neck bent all the way back and to the left side and a terrible headache. I went to the ER that day with heart palpitations, difficulty breathing and a feeling like I was not getting enough blood flow anywhere in my body. They sent me home telling me I had a panic attack - although I have never had anxiety a day in my life.
I have since been to more ER's and numerous specialists and primary doctors. I have seen a cardiologist, a pulmonary dr, a neurologist, ents, and even a gastro - as I recently have an uneasy feeling in my stomach with digestive issues. All doctors tell me I am perfectly healthy.
About a month ago I noticed that the veins in my arms, chest and neck are now very prominent where they never were before. I get aches and pains. I am cold all the time. My hands and fingers look purple. I have terrible neck pain radiating into my throat and esophagus area. Most recently my vision has become extremely blurry and my eyes are always blood shot.
Perhaps what has scared me the most is my jugular veins. I know that they should distend somewhat while lying down but even as I got to lie down I feel as if I can actually grab on and take a hold of them (on both sides).
I need muscle relaxers or Klonopin in order to even think of getting to sleep. Otherwise I have insomnia or my eyes and nerves are twitching so bad that I feel like I am falling at the point just before I am about to fall asleep.
I saw an Orthopedic Surgeon about a month ago but all he did was take xrays of my rods in my back and told me that they looked like they were holding up ok. I recently came across some information about tos.
Should I go back to this doctor for a diagnosis or should I work with a vascular or my primary doctor? I feel like both my nerves and my veins are involved.
I am sorry about this ridiculously long post. I am just so incredibly sick and tired of feeling like this. Everyday I fear for my life. This is affecting my job. I am a newlywed and I cannot enjoy anything about life at the moment. Thank god for my husband - as he has been my backbone throughout this whole thing.
If anybody has any advice or any suggestions I would really appreciate them.
Thanks so much :)
I worry about your vein symptoms. The same thing happened to me with the prominent chest and arm veins. I was having arm swelling as well. Venous TOS is rare, but it does happen...my doc knew nothing about it. I ended up in the ER with a subclavian vein clot. I would tell your doc about your vein symptoms and ask for a venous ultrasound of your upper extremities...maybe even an arterial TOS study.
I work for ortho docs and they shy away from TOS, they tell me it's too much of an unknown for them and are very much against rib resection surgery....but when a blood clot develops, it's in the court of the vascular doc and surgery in needed correct the problem. (this has been my experience)
I hope this helps, keep us updated.
Kelli
Did you have any vein problems anywhere else in your body? Phlebitis and blood clotting runs in my family so it scares me so much and now all of this is going on. I feel as if I can see so many veins in my body that I was never able to see before and they burn and ache. I feel a constant choking feeling around my throat and I always have an upset stomach.
Did you have blurry vision as well? This is something that has become new to me within the last couple of weeks. My eyes are bloodshot and no drops will fix them. They are itching and dry and so so red.
Did you have problems with your jugular veins feeling distended? When I lie down I feel like I can grab onto them. And I have constant headches that no aspirin will get rid of. I feel weak all the time and worry that something is going to happen at any moment.
What symptoms sent you to the ER for your blood clot? I feel like I beg my doctors to check for blood clots but they keep telling me I would have more swelling. Isn't there some kind of blood test that can be done as well?
Sorry about all the questions!!
Thanks!
Sometimes you have to explain to the docs that you would like certain tests to be done just for peace of mind. After the clot I was checking my whole body, I was so paranoid. My doc luckily could see my anxiety, did the tests...which were negative, but it was such a relief to me.
No, I had no previous vein problems. I did notice the veins in my chest, I didn't have any swelling in my arm at that time...it only swelled up when tn was totally occluded. I don't know of any blood tests. I have only been tested for a congenital clotting factor.
I do have one jugular that gets distended when I lie down, my doc did an ultrasound and it was negative...he said it was just the way I am.
Distended jugular and eye sight problems are symptoms of other things like Superior Vena Cava Syndrome (or occlusion), or Congestive heart failure. I in no way want to scare you with these things...they are just some symptoms of these problems.
I went to the ER because my arm was swelling and turning blue...kinda freaky.
If your doctor isn't listening to you, you should maybe find another. You need a doc that takes you seriously, answers your questions and relieves you fears. The 'not knowing' can cause you anxiety and you start watching every little thing that happens to your body.....believe me, I've been there!
Has your doc done any lab work on you? Thyroid? Lupus? just a complete work up? Or clotting factor (since it runs in your family)?
I hope this helps you, please let me know how you are doing.
Kelli
I really appreciate all your help and advice.
I have seen a total of probably about 30-35 different doctors and specialists and I have finally found a good one. He is one of the best in NYC and diagnoses mystery illnesses. They actually call him "The Real Dr. House" so I am praying he can help me.
I have always had irregular periods and went about 5 months without getting one at all. My obgyn did some hormone blood work on me and found my testosterone levels to be very high.
My new doctor is now doing extensive hormone testing on me. He has also ordered extensive thyroid testing as he feels this may have something to do with it.
I constantly feel like I have a lump in my throat which also led me to believe it may be thyroid related. The only other test that I have since now is TSH. I think he ordered pretty much everything else for me.
Both of my jugulars distend but only while I am lying down. I get the pressure and pain in my eyes usually upon waking up because I feel like the blood flow is backed up somewhat during the night. I can actually put my hand on my jugular and it feels like it is distended up until the point of my collarbone which made me think this may be TOS. In addition to my previous scoliosis and extensive working out. Do you know if my distended jugulars would have anything to do with a thyroid problem. I do feel a few small lumps inside my neck near my thyroid. I wish these doctors would stop beating around the bush and just send me for an ultrasound already!
The other think I worry about is veins in other parts of my body. I try to show my doctor but he doesn't know what my arms looked like before so he has nothing to compare it too. I feel like I can see the light green colored veins that look like spider webs all on my arms, chest, hips and legs. All of my doctors tell me I'm just "hyper aware" and if I had a clot then the area would turn red and swell. But would that happen if the clot was in my neck?
What does the congenital clotting blood test test for? I have heard of a D dimer test (don't know if that is the correct name). Are they the same thing?
Are my symptoms lupus related as well? And what is the blood test called that they do for lupus? I think I had my ANA tested which I thought was for lupus but maybe I'm wrong.
I do have faith in this doctor as he is an excellent (and expensive doctor). I believe that he will find what it is eventually but I don't know how much longer I can live with this. So any direction I could steer him in would be great :)
I am in so much medical debt now that I don't care what this costs at this point! I just want to feel better again and be myself.
Keri
You asked about blood testing for congenital clotting. I was tested for factor IV, which was negative...but there are so many other types of tests, I don't know the names. Yes, the ANA is for autoimmune disorders like Lupus. The D-Dimmer is a blood test that test for active blood clots, but is not 100% conclusive.
My vascular doc told me that my jugular distending is normal for me, it has something to do with pulmonary pressure (only one distends...maybe because the other side has a clot further down.)
You seem to have a thorough doc. When do you see him again?
Kelli
I think I will ask my doctor to do an ultrasound or some type of test on my jugular and other upper extremity arteries and veins.
I have had TSH and free T4 tested and both were in normal range. However, this morning I feel as if I can physically feel 2 lumps coming off of my thyroid area. He has ordered more hormone testing for me and more thyroid testing - total T3, total T4, and T3 uptake, which I go in for tomorrow.
I see him again in a couple weeks when my tests come back but he is always available if I feel like I am having an emergency.
I will keep you updated - Thank you for all your support!
Keri
Glad to hear your labs were normal. I have had a lump on my thyroid for about 14yrs. It is a benign thryoid adenoma. The only symptoms I had was being just slightly hyperthyroid because it was acting a functioning thyroid....it eventually burned itself out, now I just have a little lump. I had a Nuclear Medicine scan that determined it was functioning and a few years later I had a biopsy, which of course was negative.
Let me know if you have an ultrasound and how your blood work turns out....hope you are feeling better,
Kelli
I went in for my blood work this morning and I am hoping to have some results by the end of the week.
I see my doctor again on Sunday and I think then I am going to mention some additional thyroid testing as well as the ultrasound of my upper extremity veins.
Did the lump on your thyroid give you any discomfort in your throat or neck, or trouble swallowing?
Why is it that some people just have everything in the world wrong with them? I try to think positive and remember that everything makes us stronger...
Keri
So some of my thyroid blood work came back today and it was normal. I was tested on TSH, total T3, total T4 and T3 uptake. I am still going to ask if he will test for the antibodies as well as do an ultrasound.
I have an appointment with my Orthopedic on October 5 to do an EMG and talk about the TOS. I also made an appointment this coming Monday with a Vascular Surgeon regarding the TOS. If I do have TOS I feel like it is more venous/arterial than nerves. Is it possible to be a combination of both?
I really want to get ultrsound on my upper veins and arteries done because every day my circulation seems to get worse. My arms gets so purplish and swollen and my neck feels like it is pumping blood like crazy. My vision has also gotten ridiculously blurry and I am getting sharp pains up my jaw, behind my ear and up to my temple - Pretty scary!