Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 05-26-2010, 10:02 AM #1
Janice2008 Janice2008 is offline
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Janice2008 Janice2008 is offline
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Default Janice - new TOS member w/ surgery info

I think recovery has a lot to do with the experience of the surgeon.

In October of 2008 a man hit me head on, it was a high speed violent crash. The area we live in isnt the best for experienced Doctors, so I decided that it was worth the two hour drive to a orthopedic doctor with a great reputation. At first he suspected TOS, but was reluctant to make a diagnosis until more time had passed. IIRC it was about my 4th appointment that he pretty much made the diagnosis of TOS and then refered me to a specialist.
The specialist was about 4-5 hours from my house, but he had one of the best reputations in the surgical world, so I felt fairly confident that I was in good hands.
I've never been the type to complain of pain, even when they were doing the nerve tests it never really bothered me that much, maybe I just had a high threashold to pain, IDK. Anyhoo, he diagnosed me with bilateral TOS in Aug 09, that is when it really hit home.
I already knew that my life changed forever due to all of this, long gone were the days of riding quads and drag racing. I was lucky to be alive and I knew that it was still a better deal to be here and have to give up a few things than to have died that day.
I remember being in his office and it over looked the entire city, and I was staring out admiring the view and couldn't really concentrate on what was being said, but I remember my husband saying "how soon can you do the surgery, I don't want her living like this anymore"
The surgery was scheduled rather quiclky, and from that moment on I went into extrememe PMS mode, I was so scared and I honestly thought I was going to die, not from the surgery but from being put to sleep.
We went down the night before and stayed in a hotel, I didn't sleep at all.
The morning of the surgery was the worst, I think it was the annticipation of not knowing how I was going to come out of this that was what made me sick. But I also knew this was my ONLY shot at a some what normal life again. I littlerly broke into tears when the nurse put the IV in my arm, and I begged the anistiologist not to tell me when he put the sleeping stuff into me. At first he thought I was a control freak, but I explained to him in tears, how I saw that man cross the double yellow line and I knew it was comming, and in a moment I knew that I might not make it that day. I don't want to know when I'm going to go, I want to enjoy my life to the last second, not live in fear. I don't know if anyone can understand what I mean by that.
I dozed off with my husband by my side holding my hand, and if I wouldn't have made it- At least he was there.
I grogily woke up as they were wheeling me into a elevator and I saw the back of my husband, but he didn't know I was there, I was too weak and could even say anything but I was throwing a fit. I remember the nurse saying what is wrong and then he turned around. From that moment on he didn't leave my side, poor guy even slept in a hospital chair even tough we had a hotel room for him. I think I was back in the room around 1pm, and I didn't do much but sleep until about 7pm. At first I needed help getting to the bathroom, but it was just walking. I think it was probally among the top of my most embarrising moments, but I got my period during the surgery, so ugh nevermind. Anyhoo, after aboout 10pm I started to get up and go to the bathroom myself by sheer determination. Hubby was asleep and I didn't have the heart to wake him, after the long drive the day before and I knew he didn't sleep a wink either, so I just wanted to try. It seemed like I had to go every hour. I learned quickly that when I had to cough, it was soothed a lot more when he placed his had on my back, just the weight of his hand helped with the pain. The biggest complaint I had was the little plastic contraption that measured lung compacity, and it was so hard to do, but every time I did it it got better.
The next morning they took the tube out of my chest, that was quite painfull and sent me home with some morphine pills and oxycontin.
The drive home wasn't bad, I expected much worse. I think it has alot to do with the fact that we took the Escalade with us, and that has a very smooth ride. It felt like it took a long time to get home.
I took it easy for a few days and didn't really do to much. Before I left I made sure ALL the laundry was done and we have enough clothes to last a month or more. I had alot of people that said they would help with the house work, but I never really felt comfterable with someone doing my chores.Before I left I did thorough reasearch to the best of my ability on what to expect, and was even at the point where I wanted to take the dishes out of the cabinets so I would be able to access them, but in the end it wasn't neccissary. I learned to use my other hand and arm for a lot of things and before I knew it I was back to normal. To this day I still use my other arm for anything that I can. I read stories of people sleeping in recliners and not being able to walk, none of that really applied to me. Most people couldn't even tell that I had the surgery done. I wasn't allowed to drive for a few weeks, but it wasn't a big deal. I was told by local Doctors that I might never go back to my job, but in January I did. Somedays it sucks, but I can't let TOS win. During the surgery some of the nerves were cut, so I have weird sensations in my arm, most if not all will completely disappear with time. Other than that I feel like the whole thing went rather smoothly and I am happy that I went threw it because I honestly believe that it gave me a new lease on life. There will alwasy be things that I can no longer do, but atleast now I can go to work and still do normal things. I have yet to have the other side done, mostly because it doesn't give me enough of a problem to justify the second surgery. I think the surgery is major, and anyone considering it should also consider the long term affects because without a experienced doctor, the results can be devistating. I was lucky and had a wonderfull doctor that not only had excellent skill, but also was very caring and compassionate.
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Old 06-15-2010, 01:08 PM #2
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bumping for late greetings - sorry took so long.
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Old 06-17-2010, 11:36 PM #3
richard d richard d is offline
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Quote:
Originally Posted by Janice2008 View Post
I think recovery has a lot to do with the experience of the surgeon.

In October of 2008 a man hit me head on, it was a high speed violent crash. The area we live in isnt the best for experienced Doctors, so I decided that it was worth the two hour drive to a orthopedic doctor with a great reputation. At first he suspected TOS, but was reluctant to make a diagnosis until more time had passed. IIRC it was about my 4th appointment that he pretty much made the diagnosis of TOS and then refered me to a specialist.
The specialist was about 4-5 hours from my house, but he had one of the best reputations in the surgical world, so I felt fairly confident that I was in good hands.
I've never been the type to complain of pain, even when they were doing the nerve tests it never really bothered me that much, maybe I just had a high threashold to pain, IDK. Anyhoo, he diagnosed me with bilateral TOS in Aug 09, that is when it really hit home.
I already knew that my life changed forever due to all of this, long gone were the days of riding quads and drag racing. I was lucky to be alive and I knew that it was still a better deal to be here and have to give up a few things than to have died that day.
I remember being in his office and it over looked the entire city, and I was staring out admiring the view and couldn't really concentrate on what was being said, but I remember my husband saying "how soon can you do the surgery, I don't want her living like this anymore"
The surgery was scheduled rather quiclky, and from that moment on I went into extrememe PMS mode, I was so scared and I honestly thought I was going to die, not from the surgery but from being put to sleep.
We went down the night before and stayed in a hotel, I didn't sleep at all.
The morning of the surgery was the worst, I think it was the annticipation of not knowing how I was going to come out of this that was what made me sick. But I also knew this was my ONLY shot at a some what normal life again. I littlerly broke into tears when the nurse put the IV in my arm, and I begged the anistiologist not to tell me when he put the sleeping stuff into me. At first he thought I was a control freak, but I explained to him in tears, how I saw that man cross the double yellow line and I knew it was comming, and in a moment I knew that I might not make it that day. I don't want to know when I'm going to go, I want to enjoy my life to the last second, not live in fear. I don't know if anyone can understand what I mean by that.
I dozed off with my husband by my side holding my hand, and if I wouldn't have made it- At least he was there.
I grogily woke up as they were wheeling me into a elevator and I saw the back of my husband, but he didn't know I was there, I was too weak and could even say anything but I was throwing a fit. I remember the nurse saying what is wrong and then he turned around. From that moment on he didn't leave my side, poor guy even slept in a hospital chair even tough we had a hotel room for him. I think I was back in the room around 1pm, and I didn't do much but sleep until about 7pm. At first I needed help getting to the bathroom, but it was just walking. I think it was probally among the top of my most embarrising moments, but I got my period during the surgery, so ugh nevermind. Anyhoo, after aboout 10pm I started to get up and go to the bathroom myself by sheer determination. Hubby was asleep and I didn't have the heart to wake him, after the long drive the day before and I knew he didn't sleep a wink either, so I just wanted to try. It seemed like I had to go every hour. I learned quickly that when I had to cough, it was soothed a lot more when he placed his had on my back, just the weight of his hand helped with the pain. The biggest complaint I had was the little plastic contraption that measured lung compacity, and it was so hard to do, but every time I did it it got better.
The next morning they took the tube out of my chest, that was quite painfull and sent me home with some morphine pills and oxycontin.
The drive home wasn't bad, I expected much worse. I think it has alot to do with the fact that we took the Escalade with us, and that has a very smooth ride. It felt like it took a long time to get home.
I took it easy for a few days and didn't really do to much. Before I left I made sure ALL the laundry was done and we have enough clothes to last a month or more. I had alot of people that said they would help with the house work, but I never really felt comfterable with someone doing my chores.Before I left I did thorough reasearch to the best of my ability on what to expect, and was even at the point where I wanted to take the dishes out of the cabinets so I would be able to access them, but in the end it wasn't neccissary. I learned to use my other hand and arm for a lot of things and before I knew it I was back to normal. To this day I still use my other arm for anything that I can. I read stories of people sleeping in recliners and not being able to walk, none of that really applied to me. Most people couldn't even tell that I had the surgery done. I wasn't allowed to drive for a few weeks, but it wasn't a big deal. I was told by local Doctors that I might never go back to my job, but in January I did. Somedays it sucks, but I can't let TOS win. During the surgery some of the nerves were cut, so I have weird sensations in my arm, most if not all will completely disappear with time. Other than that I feel like the whole thing went rather smoothly and I am happy that I went threw it because I honestly believe that it gave me a new lease on life. There will alwasy be things that I can no longer do, but atleast now I can go to work and still do normal things. I have yet to have the other side done, mostly because it doesn't give me enough of a problem to justify the second surgery. I think the surgery is major, and anyone considering it should also consider the long term affects because without a experienced doctor, the results can be devistating. I was lucky and had a wonderfull doctor that not only had excellent skill, but also was very caring and compassionate.
May I ask who performed trhe surgery?

thanks and good luck
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