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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 12-01-2012, 08:58 PM   #121
cltbaseball9
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Originally Posted by tosmother View Post
ok friends. I need some good news to calm my nerves. In 12 days we will be in Dallas....

How about another update from Romans8, Cltbaseball9, and Losinghope?

Thanks!
Hey there tosmother, things are pretty good with me. It will be 5 weeks on Monday since my surgery! I did have a little bit of a setback in the middle of this past week with some pain. I'm pretty sure though it was because we had a couple of mornings where the temperature was in the low 30s. It wasn't all weather related, I must confess, I hit ground balls to my infielders during our off season period so I'm sure that contributed to my pain Wednesday night and Thursday. It did feel REALLY good to swing a bat again even though I wasnt swinging hard. Yesterday and today the pain hasn't been too bad at all with the warm weather. I helped put up, what is hopefully, the last of our Christmas decorations today and didn't feel much pain at all.

I understand your nervousness. Just remind your daughter not to do too much too quick. Once again I could have avoided some of my pain this week if I hadn't swung a bat. Being a former athlete can make recovery difficult at times because you aren't used to "taking it easy" for an extended amount of time. Make sure she takes her pain medicine because it will help the healing process. I had to call and get more pain meds even though I didn't really want to. I was hoping to just take some advil and tough it out. The reason I got more was because my blood pressure got a little high because of the pain. I already have high blood pressure but it has actually been better since my surgery and hopefully I can be off my blood pressure meds pretty soon.

Just know you and your daughter will be in good hands with Dr. Pearl and his staff. He is there to help you and answer any questions you have. When he gave me his phone number after surgery I honestly didn't think I would be calling or texting him. But, I have texted him several times with a question or two and he is always quick with a response. Just by him doing that made me feel more comfortable about what I am going through with my recovery.

Good luck! I know the countdown is more stressful than anything but know that you have a lot support from people on this board and we are here for you.
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Unread 12-01-2012, 10:48 PM   #122
romans8
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Cltbaseball9,

I think we had surgery the same morning as I remember my wife saying she talked to someone whose husband was a baseball coach while we were in surgery and they were in the waiting room. I am glad to see you are doing well.

For TOSmother I agree with everything he said about taking it slow. I have also experienced some return of pain since physical therapy started and I tried to be a little more active. However I am encouraged as the pain is somewhat different than what I experienced before surgery. I also believe something I read on this forum about the length and difficulty of the recovery being somewhat proportional to the length of time and severity of the TOS before surgery. Age and overall physical condition may also be factors. For these reasons I am prepared for a year or more to realize the full benefit from this. I was also very active athletically before this hit me 8 years ago but have lost a lot of muscle and cardio from being inactive this long. I have tried riding a stationary bike a few times since the surgery but even this seems to irritate the nerves in the neck and shoulder so I may need to forget this and walking significant distances for a while. It's tricky because I do not hurt while doing these things but the nerves really fire up afterwards.

We are pulling for you and your daughter.
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Unread 12-02-2012, 01:28 AM   #123
cltbaseball9
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Cltbaseball9,

I think we had surgery the same morning as I remember my wife saying she talked to someone whose husband was a baseball coach while we were in surgery and they were in the waiting room. I am glad to see you are doing well.

For TOSmother I agree with everything he said about taking it slow. I have also experienced some return of pain since physical therapy started and I tried to be a little more active. However I am encouraged as the pain is somewhat different than what I experienced before surgery. I also believe something I read on this forum about the length and difficulty of the recovery being somewhat proportional to the length of time and severity of the TOS before surgery. Age and overall physical condition may also be factors. For these reasons I am prepared for a year or more to realize the full benefit from this. I was also very active athletically before this hit me 8 years ago but have lost a lot of muscle and cardio from being inactive this long. I have tried riding a stationary bike a few times since the surgery but even this seems to irritate the nerves in the neck and shoulder so I may need to forget this and walking significant distances for a while. It's tricky because I do not hurt while doing these things but the nerves really fire up afterwards.

We are pulling for you and your daughter.
Romans8,

I was wondering about that myself after I re-read some of your posts. I think your surgery might have been just before mine. My wife did mention that she had been talking with another wife in the waiting room. I think it helped to calm my wife down having someone there who understood what you and I are going through.

I hope you are doing better and hope you don't have anymore setbacks like you did not long after surgery.

I definitely understand what you mean when you say you are going to forget about walking a significant distance anywhere. I think it's getting better but it might take longer than I expected. Like you, when I do a light workout of some sort I feel ok for the most part while I'm doing it but afterwards my nerves flare up too. And sometimes, not all of the time, I find myself out of breath just walking upstairs to check on my kids at night. I feel as if I just sprinted a lap around a track. I did a quick little jog to the mailbox and back today (about 45-50 yards total) and when I finished I felt alright. Tonight, I casually walked up the stairs to my son's room and was out of breath...lol.....it was so frustrating but I couldn't help laughing at myself thinking "wow I'm old and out of shape at 40!"

I'm just glad that the pains that I feel now aren't the same as the pain I had before surgery and I know these pains will go away as I heal. I do feel stronger every day and I know I must be patient because realistically it will probably be close to a year or so before I am back to my old self, pre-TOS. I just have to remember to take it slow even on the days I feel good because recovery is like going up a ladder and you have to take it one step up at a time to be safe.

Oh, I do have a couple of questions for you if you don't mind me asking.

Have you lost or gained any weight since your surgery? How is your appetite? Here is why I ask, I am 6 foot tall and when I went into surgery I weighed in at 228 pounds. When I was still playing ball in my late 20s my playing weight was around 210-215 so I haven't let myself go too much...haha...Anyways, as of today I am now down to 197 pounds and I haven't been below 200 since I was playing college ball 21 years ago. For some reason I just don't have much of an appetite yet. I'm not going to complain about losing the weight, especially since it has helped lower my blood pressure, so I am just curious if you have been affected in this way.

cltbaseball9
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Unread 12-02-2012, 07:31 PM   #124
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My guess is your weight drop is due to the pain pills. Before surgery I would lose weight when I went through rough periods and took a lot of pain pills. This happened again the first couple of weeks after surgery and the other complications. At one point a few years ago the pain got so intense for me that I did not sleep or eat for 7 days. I was on heavy pain meds and became extremely thin. Friends said I looked 15 years older although they did not say that at the time. I'll bet your appetite comes back when you have been off the pain meds for a while.

I am getting more and more concerned with my non-surgery left side. I have a frozen shoulder on this side that my physical therapist has been working on to "unthaw". It has already gained a few degrees of motion back but I woke up this morning with my jaw and side of my face numb. It has calmed down as the day progressed but I know this is a sign of TOS and I could end up back with Dr. P at some point. At least I know what is likely causing this versus going years and years with misdiagnosis. I am going to be patient with it and hopefully get my right side fully recovered first.

Take care and stay in touch.
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Unread 12-02-2012, 10:17 PM   #125
chloecasey
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Quote:
Originally Posted by romans8 View Post
My guess is your weight drop is due to the pain pills. Before surgery I would lose weight when I went through rough periods and took a lot of pain pills. This happened again the first couple of weeks after surgery and the other complications. At one point a few years ago the pain got so intense for me that I did not sleep or eat for 7 days. I was on heavy pain meds and became extremely thin. Friends said I looked 15 years older although they did not say that at the time. I'll bet your appetite comes back when you have been off the pain meds for a while.

I am getting more and more concerned with my non-surgery left side. I have a frozen shoulder on this side that my physical therapist has been working on to "unthaw". It has already gained a few degrees of motion back but I woke up this morning with my jaw and side of my face numb. It has calmed down as the day progressed but I know this is a sign of TOS and I could end up back with Dr. P at some point. At least I know what is likely causing this versus going years and years with misdiagnosis. I am going to be patient with it and hopefully get my right side fully recovered first.

Take care and stay in touch.
Romans8

Have you experienced the facial numbness for a while, did you also have the numbness on your operative side?..were you told by your physician that is an indication of TOS?
I too have been experiencing facial numbness but on my operative side for the past 4 months....almost 2 years post surgery. It is most evident when waking and throughout the day & depending on what I have done previous day, in addition to the facial numbness, I feel so exhausted and nauseous, even dizzy.

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Unread 12-04-2012, 07:34 PM   #126
romans8
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I experienced numbness very mildly and infrequently on operative side before surgery and none since. My doctor did not tell me this was a TOS sign but I have read this in multiple places and other people having TOS have mentioned it. In fact the pitcher whom this thread was originally about experienced it.

I don't mind numbness as long as pain does not follow. I have resumed taking muscle relaxers and seem to be doing better. It seems like they help a lot of people with TOS. I wonder if we build up resistance to them over time as they are supposedly not for long term use
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Unread 12-05-2012, 11:37 AM   #127
Eddiemaverick
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So, to clarify, are you saying that he was more likely to recover quickly and without complication because his symptoms were not as severe as someone with classic ntos?
Hi Nottherightkindofdr,

Dr. Donahue did tell me that people with symptoms farther away from the neck area (e.g. hands) are the ones more likely to have quick results. Conversely, he said that the neck/shoulder/torso issues tend to take longer.
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Unread 12-06-2012, 07:51 AM   #128
tosmother
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Just wanted to say good luck today with surgery! We are all thinking about you and hoping for the best! Please let us know how you are doing.
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Unread 12-08-2012, 07:32 PM   #129
Nottherightkindofdr
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Cool Two days out

Hi there, I can't believe I made it through the surgery. Pearl said there was a lot of compression and the scalene was wrapped around the first rib and the cervical rib. I guess this caused my to have a lot more drainage. (I had a pump hooked up untiltoday.) I'm still trying to get my meds right before I go home. Pearl was ready to send me home today, but bc I live out of towm,he recommended I stay. I still have numbness and pain in my arms, pain in my scapulas and my spine, which is really weird because I never had that pain before. Pearl said all of this is normal and continually reassures me that I'm doing fine. He has residents and I have to admit, the communication between pearl and his resident isn't the best, but she's fine. I know that Pearl is really calling the shots even though she comes in and checks on me. The hardest part is by far my neck pain. They had to cut a muscle and sew it back together, which is excruciating, and I think my op drugs finally wore off and it's just me, my body, and these oral meds. I've told them every pain I'm feeling and my pain management history, and Dr Pearl and Baylor's staff is really good about finding the right thing for me. I was able to take a shower on my own today, which was really exciting. I have the rib next to me and I'm jokingly saying I'm going to put it on the mantle. It's sad, I'm now nervous about PT, but happy to have overcome this step. My incisions are small (one for the pump), and it looks much better than what my carpal tunnel guy did in May. I know your daughter will do fine, TOSMOM. My mom gave me a Cardinal dressed up like a Cowboy, and I named it Carp, after Chris Carpenter. Sorry if this is all over the place, I'm pretty drugged still.
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Unread 12-08-2012, 09:18 PM   #130
tosmother
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Hi there. SO GLAD TO HEAR FROM YOU! I was very worried and am relieved to hear from you. I'm sorry that you are in so much pain. My daughter is getting nervous about that. We talked about it and I told her that I wasn't going to force her to do this, but the longer she went untreated, the more damage was being done to her nerve. I guess we will find out more on Tuesday. i really appreciate you taking time to post! So did he do the incision under your armpit, or by your collarbone? He has a resident, but he was the only one operating, right? Were you in the hospital two days? Please don't think that you have to answer right away, I'm just curious. I like that you kept the rib, that's what my daughter is going to ask him...if she can have it...crazy girl

Take care & know that we are all thinking about you and keeping you in our prayers.
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