Hi everyone,
I am new to this community and have been through the ringer with TOS but have had success and wanted to share my story for all those out there who may be going through it right now. I know that when you are going through TOS, it can be really depressing and can give you tons of anxiety, but there is hope. So here is my story of Vascular TOS.

I have always been into exercising. I went to the gym regularly 5 days a week from around 16 years old until I was around 21 lifting weights and doing cardio. I had been tested for scoliosis in my teens a couple of times and everything came up negative. Anyway fast forward to age 23, I graduated college and got married, and started my desk job. I stopped working out because of the new schedule/lifestyle. My father died of cancer when I was 26 and I went into a depression for over a year. After around a year I just started feeling really unhealthy and decided it was time to turn things around. I wanted to get back in shape and figured this would help my depression as well. I started doing P90X and was faithful to it for around 4 weeks when one day all of the sudden after doing one of the cardio workouts my left arm started pulsating. It was swollen to about twice the size of my other arm and turned blue. (note: before this I had always noticed that my left arm was slightly bigger than my right, and that it was always a little more red. I noticed this for years but thought nothing of it) I immediately knew something was wrong and decided with my wife to go to an emergency care doctor rather than the emergency room because the wait time in our hospital is so long. That was my first mistake.

When I go to the emergency care, the doctor told me I had cellulitis and gave me a strong antibiotic. She said if it didn't clear up after a few days to come back. I took the antibiotic and of course it did not get better. I came back to the emergency care 2 days later and thankfully the physicians assistant I saw was the assistant to my primary care physician. He did an X-ray of my spine and told me I had slight scoliosis and that it is very likely that I am experiencing vascular Thoracic Outlet Syndrome. He said to take aspirin for now and gave me a prescription to get a sonogram of my shoulder and arm. By this point my left arm is basically useless. It is swollen, blue, painful, and I can feel the fluid pulsating through it. The only relief I could get was to keep it elevated. The next day I got my sonogram and was told by the doctor that there was no blood clot in my shoulder. At this point I am completely confused and scared as to what is going on.

I see my primary care physician by the end of the week and he said he still suspects a blood clot and refers me to a vascular surgeon. He also starts me on heparin and warfarin. I am giving myself 3 shots a day in the stomach at this point waiting on my next appointment. I go to the vascular surgeon, he does a sonogram, and then tells me that I do indeed have a blood clot in my subclavian vein. He says that it looks to be almost completely blocked and that I need surgery (a first rib resection) but he does not do the surgery. I am really scared thinking at any moment the clot could come lose and I could have a heart attack or PE. This hung around with me through my whole TOS experience.

I live near Baltimore, so the vascular surgeon says that one of the best TOS syndrome surgeons works at John's Hopkins and she has been specializing in the surgery to relieve the TOS for over 20 years. Her name is Dr. Freischlag. He gives me a referral to her. I call my insurance company and they tell me that they cover her. I watch some YouTube videos that she has done and am excited that I have the good fortune to leave near the doctor who is known all over the world for her expertise in TOS. I schedule my appointment and it is 3 weeks out. In the mean time I am taking my blood thinners and patiently waiting to see her. My arm has not changed.

I go to see her and she tells me about I definitely need surgery, that the first rib has been rubbing on the subclavien for years causing it to scar inside and for the blood to clot. We schedule a surgery date. I feel very confident in her and am excited that there is a solution to my situation. Needless to say the week before my surgery my insurance says they will not pay for the surgery under Dr. Freischlag, even though they told me they would in the beginning, and it is pushed back. I battle with Carefirst (Carefirst I hate you by the way) for the next 2 months trying to get Dr. Freischlag as my surgeon but they would not budge. I know this sounds ridiculous but I was very confident in her abilities and had read so many stories of nerve damage, etc. that I wanted the best to do my surgery. Carefirst would not budge despite appeals to the Insurance Commissioner of Maryland. Not only that, but I was stuck with the initial $600 bill of my first visit with her.

Fast forward 2 months and I now realize that I have to find a new surgeon, and Dr. Freischlag refers me to Dr. Reifsnyder at John's Hopkins Bayview. At this point my arm is actually starting to feel a little better. It no longer really hurts and the swelling is down some, but it will go back to the way it first was if I lift anything heavy or overexert it. My summer of "getting fit" now consists of laying on the couch and at the most going for a light walk by doctors orders. Carefirst tells me they will definitely cover the surgery under Dr. Reifsnyder this time and I am left to no other choice. I see Dr. Reifsnyder and was very pleased with his manners and confidence. He seemed like a great surgeon. He told me that my arm was starting to feel better because my body was trying to find a way around the blood clot by opening up the blood vessels in my shoulder to compensate the blood flow. He told me I would definitely feel a bit better with time but would never be back to normal without surgery. So I schedule my surgery because I am 27 years old and not going to spend the rest of my life with a gimp arm.

On November 15, 2011 I go in for surgery. I am scared because this is my first, but thinking about my Dad and all he went through gave me courage. IV's go in, I am told to count backwards from 10. 10.....9.....blackout. I wake up in recovery not knowing where the heck I am. My wife is there. I can't feel my arm. There is a little pain. I am in and out for several hours.

I wake up a few hours later in excruciating pain, I cannot feel or move my arm. I thought it had been amputated. They give me more morphine. I am in and out of sleep still at this point. I wake up in the middle of the night in even more pain. It literally feels like there is a knife shoved in my armpit and being jiggled around. I call for the nurse, and she says they already have so much morphine in me that I should not be feeling anything. A doctor comes in with a syringe and puts it in my IV. In the syringe was dilaudid. I immediately felt a rush all through my body and the pain ceased. I fall asleep.

I wake up the next morning still in pain at times, but the new IV has me feeling better. I eat some, but am still very weak. The physical therapist comes in and has me walk up and down the hallway. I never knew walking and standing up could be so difficult. Not only that but I almost threw up several times just trying to stand up. I was so weak it was crazy. Come to find out I bled a lot during surgery and that is why I had so much weakness and pain.

The car ride home was really unpleasant. I could feel every bump. I am on a prescription of dilauded in the highest dose they can give. I sleep for the first night or so, then I am sleepless for the next 4 nights because I stopped the dilauded all of the sudden. I don't medication and just stop the dilauded (this was a mistake because I experienced withdraw). I could not sleep, my heart was racing in my ears all the time, I could actually see the veins in my eyes pulsating with my heart beat. I thought I was going to die and did not realize until later that it was just withdraw from the medication. After a few days Advil was all i needed to control my pain. I had a huge hematoma in my arm pit and could not even lay my arm down to my side for several weeks. I was bruised all the way down my side and into my groin and legs from the bleeding.

Fast forward a few weeks and I am feeling much better. Dr. Reifsnyder tells me that I bled so much because the surgery was a bit "violent" because my muscles were very tight from not using my arm much for several months. They were pulling and prying to get to my first rib.

All the bleeding has also cause nerve damage because blood, when loose in the body outside of the blood stream, inflames the tissues. I do have to say that he is truly a great doctor despite the bleeding and I would recommend him to anyone. He has great bedside manners and you can talk to him just like he is a regular guy. He is awesome!

Now it has been over a year and my arm is basically back to normal. I just started working out at the gym a few weeks ago and have had no swelling or any problems when lifting weights. I take an aspirin a day just to be on the safe side. I do have a bit of nerve damage though. I could not feel my tricep, forearm, or palm at first but the nerve damage has slowly healed over the past year or so. Now the only thing I cannot feel is the top of my tricep area near the arm pit on the back of my arm. I am confident that it will heal over time. The incision has healed up great as well and I can hardly tell there is a scar there. From my last sonogram, there is no more clot in my vein.

Sorry for such a long winded story, but I just wanted to share my it with those people out there who are currently going through this. I do not want to scare anyone with the surgery story, but hey that is the way it was and I wish I could say it was easy.

Would I redo anything? No not really. I feel like even though it was tough and a nightmare at times, I still had a great outcome. I am just thankful to finally be back to normal. Oh yeah, and I did learn from my mistake, I am going directly to the ER the next time something serious happens.

I feel the same way as you did.. I am only 26 years old! I don't want to spend my life having to do bed rest every day, never playing the piano again, not being able to pick up my daughter (let alone grandkids someday).

I am looking at surgical options instead of PT (don't stone me, people) because my symptoms are so far progressed. I'm not really hesitant about surgery because I'm so young, I want a chance to live my life a little bit!

Thank you for posting this! It's good to see that even though you had a rough experience, it turned out well for you.

wow....do most surgeries feel like your hand is cut off? i dunno about surgery anymore.

glad to see you guys on here cause it sucks to be so young like us and have this.

I myself find it difficult to come to terms with having surgery to be the only way to correct this issue. But I recently came across Team Doctors blog that has a doctor that is well known with this type of issue. I have started going to treatment and I can honestly say I am so so happy that I came across this before deciding surgery. I know for some they feel that it is the only option which is 100% false. I'm feeling so much better, I feel these type of results may not have even been this guaranteed if I went through with the surgery!

i recommend you guys go to the Dr's blog to see what I'm really talking about.

*edit*

this literally saved me thousands from surgery and emotional and physical stress. I know that many don't want surgery as an option because a lot of things could go wrong. there's no harm in just checking his blog out and seeing what he can do to help you. He has helped me so much so far.

I recently read the info on TOS which was written by Dr. Stoxen - is this the one you were referring to. Can you elaberate more about the Doctor, his location, and your experience with the treatment. Glad you have found something to help you! QUOTE=drewanderson;975670]I myself find it difficult to come to terms with having surgery to be the only way to correct this issue. But I recently came across Team Doctors blog that has a doctor that is well known with this type of issue. I have started going to treatment and I can honestly say I am so so happy that I came across this before deciding surgery. I know for some they feel that it is the only option which is 100% false. I'm feeling so much better, I feel these type of results may not have even been this guaranteed if I went through with the surgery!

i recommend you guys go to the Dr's blog to see what I'm really talking about.

*edit*

this literally saved me thousands from surgery and emotional and physical stress. I know that many don't want surgery as an option because a lot of things could go wrong. there's no harm in just checking his blog out and seeing what he can do to help you. He has helped me so much so far.[/QUOTE]

Thanks. Can you expand? For example:

Which doctor are you seeing? How often? What is the treatment like in the office? Are you given things to do at home?

[/QUOTE]


well when i came across his article on TOS which i put a link to below. I read it and I felt like he completely understood the issues like no other doctor I've been to. I then went to his information about his clinic and set up an appointment and have been feeling better ever since. everything was throughly explained and i felt like i was learning so much about this issue and how it was all going to be corrected. I'm enjoying the experience so far. I definitely felt a difference that same day that I got treatment. His clinic information in on his blog as well

well when i came across his article on TOS which i put a link to below. I read it and I felt like he completely understood the issues like no other doctor I've been to. I then went to his information about his clinic and set up an appointment and have been feeling better ever since. everything was throughly explained and i felt like i was learning so much about this issue and how it was all going to be corrected. I'm enjoying the experience so far. I definitely felt a difference that same day that I got treatment. His clinic information in on his blog as well[/QUOTE]

i read his site too- he sounded great. Are you in Chicago or did you have to travel. I will see if I can link it-because yours isnt showing up. keep us posted on your progress.
http://teamdoctorsblog.com/

i read his site too- he sounded great. Are you in Chicago or did you have to travel. I will see if I can link it-because yours isnt showing up. keep us posted on your progress.



sorry about the link. and yes thats exactly the blog that lead me to getting treatment. I do not live in Chicago but i called the office and made arrangements with him directly about the travel. I am doing much better he also taught me exercise that will help me strengthen the weak muscles in my neck.

How far did you have to travel?
Did they give you a plan to follow for self care back home, or to take to a local PT?