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

Chris Carpenter -- St. Louis Cardinals MLB Pitcher

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Unread 11-09-2012, 07:15 AM   #81
Nottherightkindofdr
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Originally Posted by mytea View Post
Hello All! I have a consult with Dr. Pearl on November 20th. I had a test performed at a vascular clinic this past summer. I cannot remember the name of it, but they clipped sensors of some sort onto my fingers on both hands and had me lift my arms and tell them when I started to go numb. (Has anyone heard of this?) Should I contact the office and have them forward that report to me so I can take it to my consult appointment? To be honest the office never even sent me the results of that test. I have all the other info and am worried so it is very reassuring to hear how kind he is!!! This pain is a nightmare
It sounds like the arterial Doppler test. I would have them give you a copy of the report. I gave him mine. I don't know to what degree he looked at it, but it's good to have anyway. Good luck on the 20th. Let us know how it goes.
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Unread 11-09-2012, 12:30 PM   #82
romans8
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Hello, Romans8. I was wondering how you were doing now. Do you have tos on your left side also? Is the side that you had surgery on feeling better than it did before surgery? I know that you weren't feeling too well at the beginning of the week. I am so sorry. I'm glad that you are being truthful with us though, I know what to expect with my daughter. (although, I'm not going to scare her with the details) I did tell her that the one thing that everyone says is that they feel like they have been run over by a train! I hope you get some good news when you talk to Dr Pearl. Keeping you in our prayers!
Yes I do have left side and it is somewhat severe to only have it for 6 to 7 months. I say that because I carried severe pain on the right for 7 years before TOS was diagnosed. The game plan at this point is to give PT a good long chance to correct the left side. I am thinking a year if it takes that long unless PT makes it worse. I am very confident we stopped this monster on the right side and I am very confident it will respond well to PT. I plan to start next week.

So our little support group has been made known to Dr. P. haha I find that somewhat humorous (we all need laughter so thank you to the young lady who told him that) and hello Dr. P if curiousity got you. I seriously doubt he has time though.

I am pulling for all of you. Continue to lead the charge Hope (I liked the name change) and I just know the others will do fine. I am committed to praying for each of you as the power of prayer is so strong.
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Unread 11-09-2012, 01:18 PM   #83
mytea
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Default Arterial Doppler

You are probably right...you know, when the lady at the vascular center performed the test she said that it showed obstruction (if that is the right term?) on the right side, which is my 'normal' side and the left side showed normal activity and that is the side that I want to cut off cause the pain is so intense at times! Does that make sense to anyone or has anyone else gotten a similar read? Thanks



Quote:
Originally Posted by Nottherightkindofdr View Post
It sounds like the arterial Doppler test. I would have them give you a copy of the report. I gave him mine. I don't know to what degree he looked at it, but it's good to have anyway. Good luck on the 20th. Let us know how it goes.
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Unread 11-09-2012, 01:20 PM   #84
mytea
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Default Arterial Doppler

I contacted the clinic for them to send me the report just to have it with me. I have not read the official report so I will report back once I receive it.

Quote:
Originally Posted by Nottherightkindofdr View Post
It sounds like the arterial Doppler test. I would have them give you a copy of the report. I gave him mine. I don't know to what degree he looked at it, but it's good to have anyway. Good luck on the 20th. Let us know how it goes.
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Unread 11-10-2012, 08:51 AM   #85
romans8
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I saw one post on here about a patient going for a 1.6 mile walk at two weeks post op. it was a beautiful day here yesterday and I have been feeling pretty good so went for a short walk of about a mile. It felt ok while doing it but last night I knew I had made a mistake. The neck muscles were just not ready for that and became tender to the touch. I am 11 days post op and simply got a little too ambitious. I will pay for it for a few days and then be ok.

LH since you are ahead of me in this journey I do have a few questions to throw at you. I thought I remembered you saying you did not have the rib removal so some of this may not be applicable:

1. Did you have a hard muscle that sort of felt like a knot that ran from just above the scar going south toward the surgical area? If so does it stay that way or soften over time? I asked Dr. P about it and he said something about this being where the muscle is tied together ??? This muscle became tender to the touch after overdoing it yesterday.

2. Did you have an area below the medial edge of the collarbone that burned a little bit when you tensed the neck muscles? This area is only an inch or so from the front spine of the upper rib cage. This may be something with the rib removal.

3. Were you able to sleep in a bed right away or did you stay in a recliner? I have been sleeping in a recliner since I got home. The main reason is it strains my neck to lay down and to get up from the horizontal position.

4. Did they send that breathing exercise thing home with you? If so how long did you keep using it? I know it is used to prevent pneumonia in the first week but possibly to keep the pec muscles stretched out. It still hurts when a full inhale is made due to the pec muscle being stretched.

I obviously did not do as good a job as you with questions for him and I want to be respectful of his time. I hope you are continuing to do well.
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Unread 11-10-2012, 08:39 PM   #86
LosingHope
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Hey Romans8! Glad you felt well enough to go walking, but sorry you are paying for it now. Super glad to see your earlier post where you said you were confident the monster on the right is beaten! You sound like you've turned a corner. Yay!

Answers to your questions:
1. Yes! At first I poked at it constantly, wondering if it was some remnant of something that didn't get totally removed and trying to figure out what it might be connected to. I can't feel it anymore, though. It's funny you mention it, because it was only last week that I realized it's totally gone.

2. I did not have that - which may be, as you mentioned, because I only had the cervical rib & scalenes removed and not the first rib.

3. I slept in a bed right away because I just can't sleep in my recliner - it's faux leather and made me too hot, but I did have a huge number of pillows - body pillows, king size pillows, tiny pillows, you name it - that helped prop me up and cradle the neck and shoulder. At first, in the morning, I had to roll onto my non-surgery side (still on the pillows) and swing my legs off the side of the bed, using the momentum from that and my arms to get upright without straining my neck. It got easier to get up and down about the same time I was able to start sleeping on my side again.

4. Keep using the breathing thing several times a day until it's beyond easy to do it every time. If it's still difficult or painful, it's too soon to quit. You can use it as often as every hour but that's usually not necessary after the first week. I got into the habit of using it every time I took drugs (and every time I was really bored) to ensure I kept doing it regularly. By the time I quit using it, I was actually doing a much deeper (by 750-1000 ml) inhale than I was prior to surgery.

This week I've experienced some soreness as I try to get back to normal life, and tightness in the right side of the neck, but it's been manageable. Starting to find the balance between "enough" and "too much," I think.
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Unread 11-11-2012, 05:12 PM   #87
cltbaseball9
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I have been reading all of these posts since about a week before I had my surgery with Dr. Pearl. I had mine done 2 weeks ago tomorrow (Oct. 29). All of the info has been very helpful because it did prepare me for things to come. I am actually going to try and go to work tomorrow. I'm a high school teacher/baseball coach so I figure I can at least teach my classes without having to move around too much. I'm still a little worried though because I still tend to lose my breath quite easily. I guess that could be normal since I am just 2 weeks out.

Also, just curious, on my 4th day post op I started having muscle spasms in my neck, chest, and rib cage area and it was by far the most intense pain I have ever felt. Did anyone else experience anything like this? Luckily the spasms were off and on for about a day and a half and I haven't been bothered by them since. Another thing I have had is an issue with is coughing. As long as I sit upright or sleep upright it isn't much of a problem. If I try to lay down then I feel like I can't stop coughing and, as you know, it can be pretty painful.

I've really enjoyed reading the posts and the positive attitudes on here are great and it is what keeps me coming back to read more.
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Unread 11-12-2012, 05:14 PM   #88
tosmother
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So, Cltbaseball9, how was your first day back at school? I am impressed that you felt like going back today after just 2 weeks! I am interested to hear about your experience with Dr. Pearl. How long had you had your symptoms before you decided on surgery? I hope your day went well.

My daughter has surgery in exactly a month from today. I saw her this weekend (she is in college) and asked her if she wanted to back out...she said no way! She said she wants to put this all behind her and get on with her life! I'm praying that's how it all works out!

Take care and keep us posted on your recovery
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Unread 11-12-2012, 05:17 PM   #89
tosmother
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Hi, Romans8, How are you feeling today? I'm so glad that we have LosingHope here to answer all our questions! I hope you both are still on this forum when we get home from surgery....I have a feeling that I'm going to need you both

I hope that you are getting better each day. Know that we are still praying for you!

Take care of yourself.
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Unread 11-12-2012, 07:11 PM   #90
irisheyesmilin
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Originally Posted by romans8 View Post
I have been reading this thread with great interest. First thanks to you for sharing this information. I get the feeling that most people who get well leave these types of forums.

Did Pearl ever suggest Botox injections? What tests did he do to confirm TOS before surgery? Botox is supposed to be a 3 - 4 month relief option but also another confirmation of TOS. I had a scalene block that worked very well to confirm TOS but a botox injection that failed miserably. My local vascular surgeon does not know what to do. He was trained at John Hopkins for this so I thought he was a good choice. However I question his experience. I realize I need to see a national expert.
I'm not sure where you are from. Since your Dr was trained at JH do you go see the dr there? If so, instead of him why not see the expert at John Hopkins in Baltimore Maryland, the Chief of Vascular Surgery, her name is Dr. Julia Freishchlog. She does and has done many TOS operations and is highly recommended.
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