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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 11-05-2012, 07:19 PM   #71
romans8
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Originally Posted by tosmother View Post
Thank you so much for keeping us posted! i have been thinking about you alot. I am keeping you in my thoughts and prayers. My daughter was having lots of pain this weekend and she is just so ready for surgery. I hope that it is like you said...she is young, she hasn't had this for a long while, and is in pretty good shape. Hopefully all of these things are positives for her. We go to Dallas on December 11th for our appointment and then surgery on the 12th.

Thanks again!
I will do anything I can to help you and your daughter. I know of another 21 year old basketball player locally who had the same surgery with this doctor and he is fine and playing college basketball this year. I know you are afraid with this being your daughter. When I was in so much pain Saturday I told my wife the only thing worse would be to watch one of my kids (I have 5) go through this so I can imagine how you feel. I really do believe your daughter has a lot of things going for her to make this a faster and less painful recovery. I will be praying for her and please give us updates when the time comes.
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Unread 11-05-2012, 07:35 PM   #72
LosingHope
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It was rough but I hope I turned the corner yesterday. Day 5 was the worst and had me and my family concerned. I had lost my voice from the breathing tube so my wife called Dr. P. and he was most helpful. He assured us what I was experiencing was not unusual and I had one of the tightest compressions he had seen. My nerves were going wacko and it was not fun. However people prayed over me Saturday night and I woke up Sunday morning feeling much better. It feels as though my nerves have settled down and now I am dealing with muscular pain. I have also started backing off the pain meds.

I have a long way to go but I can see the light. My left side has contracted more but I hope this is temporary and just a reaction to the right side trauma. I can see why physical therapy is not started for two weeks. It may be three for me.

For those of you facing this surgery please do not let my journey scare you. I agree with Losing Hope that every case is different. I think mine is on the severe end as I carried it so long and had so many other surgeries near that area. I am afraid of scar tissue forming as I seem to be a scar tissue generator.

I hope I make a lot more progress this second week but I will keep you updated. Like LH I will do anything I can to help anyone battling this affliction.
Good to hear from you, romans8! I actually started PT close to 2.5 weeks - I had surgery on a Wednesday and didn't start PT until the Monday following the 2 week mark. And then they took it easy on me for the first week, just gentle stretching, and they did some massage and passive range of motion stuff. Actually, the first day the PTs were regarding me really warily, as though my arm or head might suddenly fall off. No one at my PT clinic had heard of TOS or rib/scalene resection prior to me, so I guess they had no idea what to expect.

Sorry you lost your voice! I'm thankful that didn't happen to me - I have enough trouble asking for help as it is. Are you using your left side more than usual since you have to go easy on the right? That could be contributing to your current left side issues. Or are you having to rest more on that side, either sleeping or watching TV or whatever? I usually sleep on my right side, and sleeping/resting on my left side while my right side was healing definitely aggravated that side of my neck; that stopped happening once I was able to sleep on the right (or at least alternate sometimes during the night) again. Hopefully yours will resolve as well.

I'm glad to hear you have a good family and spiritual support network helping you through. And glad to hear you called the doctor when you needed to - Dr. P really is so kind and reassuring. I wish more doctors were.

Hang in there, romans8! We're rooting for you!
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Unread 11-06-2012, 02:51 PM   #73
Nottherightkindofdr
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Default Consult with Dr. Pearl 11/2/12 - long and rambling

Thanks for reminding me TOS mother. I brought my parents and my boyfriend to my consult with Dr. Pearl's office Friday and they were joking with me that there wasn't enough room in the consult room for my entourage. My parents will be with me after the surgery, and so they needed to be there, and my boyfriend has been to EVERY neurologist appointment, test, etc, and he's a lot more calm than I am about this stuff and would ask the questions I forgot to ask. Dr. Pearl was unfazed by all these people being in there with me.

I brought CDs of my X-rays, arterial doppler test, and my MRIs (cervical spine and brain. Dr. Pearl looked at them right before he came in and met with me.
When he came in the room, he made me lift my arms while he listened to my heart. And then I told him when my hands would start to go numb after raising my hands (almost immediately.) He then asked me where I had pain.
He sat down and then proceeded with my assessment.

He said he saw my cervical ribs on the discs I brought and that I have a classic case of TOS. I had a page of questions written down, but he answered most of them before I could ask them. He said he'll definitely take out the cervical rib and the scalene on the left side, but during the procedure he'll decide if he needs to take out the first rib as well. I said that I only wanted to go under the knife once, and he assured me that he did too and he had cleaned up enough other doctor's messes that he would take it out if it needed to be out.
He said he can only do a rib resection on one side at a time, and that if I continue to have symptoms on my right side he can do that one later. (I'm sure after I'm done, I'll only want one.)
I asked him the best way to prevent scar tissue and he said to keep it mobile and moving in those first two weeks while I'm on the pain meds. Then, PT will start after that. I asked him if he had a recommendation of where to go for PT in Houston and he said it's a pretty standard program so I could go anywhere I wanted to. He confirmed that I might have some scapula pain after the surgery (thanks for the heads up on that Romans)


in another part of the conversation he mentioned that other surgeons would just take out the scalene and not the first rib causing more scar tissue to build up, and he's had to fix that. (Sounds like romans8)
I also started physical therapy at the beginning of October for two reasons:
1. I wanted to see if it would help
2. I didn't want to get to Dr. Pearl in December (when I was originally supposed to have the consultation) and him tell me to go back and try physical therapy.
So, it helped with pain, but I still wasn't able to do much. I asked Dr. Pearl if I should continue with PT until the surgery and he said he wouldn't. He probably wants to see where my 1st rib ends up and see if he needs to take it out.
The best part was while I was paying, he called me back into another examination room and introduced me to a patient who had just had the surgery two weeks ago. She showed me her scar (two inches max), and that she was able to raise her hand halfway above her head, and she had just walked 1.6 miles that day. She looked amazing! She had had a 1st rib resection, and I was so impressed. She was asking him if she could go back to work for half days!! I couldn't believe it. If I look and feel like that after two weeks, I'll be thrilled.

I also really like his personality. He asked how I found him and was surprised that I found out about him on here and through Chris Carpenter's surgery. I told him we have a little Dr. Pearl's patient support group here
He's really reassuring and all the things that hope said about his confidence/humility are on the money. He gave me his cell # already and said to call him or text him with any questions! I was so happy to have met Dr. Pearl and he's given me so much hope. I asked him if I could give him a hug after the consult, and my boyfriend started tearing up with joy that there's light at the end of this crazy, winding, painful tunnel. I can't wait until December 5th, and TOSmother, I hope you have a similar experience. I'm running to class, but let me know if you have any other questions.
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Unread 11-06-2012, 02:59 PM   #74
jkl626
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He sounds awesome! So glad you are in good hands! I will definately go see him if I decide on surgery! Are you traveling far?
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Unread 11-06-2012, 03:32 PM   #75
tosmother
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Originally Posted by Nottherightkindofdr View Post
Thanks for reminding me TOS mother. I brought my parents and my boyfriend to my consult with Dr. Pearl's office Friday and they were joking with me that there wasn't enough room in the consult room for my entourage. My parents will be with me after the surgery, and so they needed to be there, and my boyfriend has been to EVERY neurologist appointment, test, etc, and he's a lot more calm than I am about this stuff and would ask the questions I forgot to ask. Dr. Pearl was unfazed by all these people being in there with me.

I brought CDs of my X-rays, arterial doppler test, and my MRIs (cervical spine and brain. Dr. Pearl looked at them right before he came in and met with me.
When he came in the room, he made me lift my arms while he listened to my heart. And then I told him when my hands would start to go numb after raising my hands (almost immediately.) He then asked me where I had pain.
He sat down and then proceeded with my assessment.

He said he saw my cervical ribs on the discs I brought and that I have a classic case of TOS. I had a page of questions written down, but he answered most of them before I could ask them. He said he'll definitely take out the cervical rib and the scalene on the left side, but during the procedure he'll decide if he needs to take out the first rib as well. I said that I only wanted to go under the knife once, and he assured me that he did too and he had cleaned up enough other doctor's messes that he would take it out if it needed to be out.
He said he can only do a rib resection on one side at a time, and that if I continue to have symptoms on my right side he can do that one later. (I'm sure after I'm done, I'll only want one.)
I asked him the best way to prevent scar tissue and he said to keep it mobile and moving in those first two weeks while I'm on the pain meds. Then, PT will start after that. I asked him if he had a recommendation of where to go for PT in Houston and he said it's a pretty standard program so I could go anywhere I wanted to. He confirmed that I might have some scapula pain after the surgery (thanks for the heads up on that Romans)


in another part of the conversation he mentioned that other surgeons would just take out the scalene and not the first rib causing more scar tissue to build up, and he's had to fix that. (Sounds like romans8)
I also started physical therapy at the beginning of October for two reasons:
1. I wanted to see if it would help
2. I didn't want to get to Dr. Pearl in December (when I was originally supposed to have the consultation) and him tell me to go back and try physical therapy.
So, it helped with pain, but I still wasn't able to do much. I asked Dr. Pearl if I should continue with PT until the surgery and he said he wouldn't. He probably wants to see where my 1st rib ends up and see if he needs to take it out.
The best part was while I was paying, he called me back into another examination room and introduced me to a patient who had just had the surgery two weeks ago. She showed me her scar (two inches max), and that she was able to raise her hand halfway above her head, and she had just walked 1.6 miles that day. She looked amazing! She had had a 1st rib resection, and I was so impressed. She was asking him if she could go back to work for half days!! I couldn't believe it. If I look and feel like that after two weeks, I'll be thrilled.

I also really like his personality. He asked how I found him and was surprised that I found out about him on here and through Chris Carpenter's surgery. I told him we have a little Dr. Pearl's patient support group here
He's really reassuring and all the things that hope said about his confidence/humility are on the money. He gave me his cell # already and said to call him or text him with any questions! I was so happy to have met Dr. Pearl and he's given me so much hope. I asked him if I could give him a hug after the consult, and my boyfriend started tearing up with joy that there's light at the end of this crazy, winding, painful tunnel. I can't wait until December 5th, and TOSmother, I hope you have a similar experience. I'm running to class, but let me know if you have any other questions.
Thank you, thank you, thank you! I needed to hear all of that! I'm so excited for you! You, Losinghope, and Romans8 have been my life savers....I don't know what I would do without you all! I told my daughter that I had joined this group and that I had talked to so many people and that you all had helped me so much. She told me that's what she wants to do....after her surgery, she wants to help others like you all have helped me! I really appreciate everything that you told me. Good luck & please keep us posted!
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Unread 11-06-2012, 04:12 PM   #76
Nottherightkindofdr
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Originally Posted by jkl626 View Post
He sounds awesome! So glad you are in good hands! I will definately go see him if I decide on surgery! Are you traveling far?
Just from Houston (about 3 hours)
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Unread 11-06-2012, 07:45 PM   #77
LosingHope
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Originally Posted by Nottherightkindofdr View Post
I also really like his personality. He asked how I found him and was surprised that I found out about him on here and through Chris Carpenter's surgery. I told him we have a little Dr. Pearl's patient support group here
That's funny! I bet he got a kick out of it. Maybe we should make T-shirts. I'm glad your appointment went so well and you have a plan!
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Unread 11-08-2012, 09:11 AM   #78
romans8
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I am still doing well. I hope to have a phone conversation with the doctor today as I am anxious to start physical therapy. My biggest concern at this point is my left side. Will I have to go through this again or will physical therapy bring that along? I hope it is the latter but only time will tell.
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Unread 11-08-2012, 09:29 AM   #79
tosmother
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Originally Posted by romans8 View Post
I am still doing well. I hope to have a phone conversation with the doctor today as I am anxious to start physical therapy. My biggest concern at this point is my left side. Will I have to go through this again or will physical therapy bring that along? I hope it is the latter but only time will tell.
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!
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Unread 11-08-2012, 10:27 PM   #80
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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
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