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


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Old 11-13-2012, 06:42 PM #91
cltbaseball9 cltbaseball9 is offline
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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

Dr. Pearl is awesome! He answered any questions that I had and also helped put wife at ease about the surgery and answered all of her questions as well. I had my symptoms for about a year and a half and things got better in the beginning but when baseball season started up my symptoms flared up and wouldn't go away. I coach high school baseball in the spring and pro baseball in the summer so I throw a lot of batting practice. I felt like your daughter in that I was ready to get it done and over with so I could move on. This baseball season will be a big test as to how I have recovered.

As for the first day of school, it was tough at times, because i left my pain meds at home on accident, but I made it through the day. I was quite exhausted when I got home and was asleep by 8:00 that night. Today was a little better because I took a pain pill after 1st period and I made sure I didn't push myself too hard. I still get "winded" some because it still hurts to take deep breaths. I also made sure I stayed out of the hallway during passing periods so nobody would bump into me. I'm glad I went back though because it forces me to walk more and get myself back in shape.

I will say that this has been the hardest and most painful surgery for me. I have had an elbow and both shoulders worked on and the pain I felt with those seems very minor to what I have felt with this surgery. Luckily I have pain medication around for when I really need it.
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Old 11-14-2012, 12:55 PM #92
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Carpenter did not have classic presentations of ntos. He had mainly hand symptoms. Tingling and numbess. He was seen and followed by experts in saint louis that adviced against surgery. And subsequently went to texas. It is important to distinguish his tos symtoms and those of majority others.
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Old 11-14-2012, 04:49 PM #93
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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.

Well, since you asked, hello from the hospital. Nothing is ever easy for me. About 5 days ago I developed a pain in my lower rib cage. I thought it was a pulled muscle reaction from the surgery. It grabbed when I took a deep breath. My wife kept telling me I needed to get it checked out but I refused. By yesterday it was serious so I contacted Dr. P and my local doctor who referred me. Both said I needed a chest X-ray. I went to the ER and got the chest X-ray. I knew it was not good when they said I needed a CT scan. CT confirmed a very large pulmonary embolism! I am so glad we came in. I am in bed on blood thinners. I hope to go home tomorrow but I will be on this medicine for months at a minimum and have to be very careful in what I do because of bleeding.

Fortunately they have found no leg clots or heart problems. I have always had a strong heart from being athletic before TOS. This was solely a freak thing from the surgery. It is likely due to me not moving around enough the first few days or so. Dr. P was so sorry and said this is the first time this happened in more than a thousand of these surgeries. I believe him. I do encourage people to move around as much as you can after the surgery. I will get through this and hopefully start PT for TOS next week. I hope the blood thinners are not needed long term and thankful a bigger disaster was averted.

Thanks to each of you for your thoughts and prayers.
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Old 11-14-2012, 05:47 PM #94
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Thank god they caught it and you are ok.
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Old 11-14-2012, 06:12 PM #95
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Yes, so glad you got it checked out.
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Old 11-14-2012, 07:03 PM #96
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Romans8! I am so sorry that this happened to you! Thank God you listened to your wife! I can't believe it....I was hoping that you were doing so good that you didn't have time to talk to us right now I hope that you are out of the hospital real soon and back on you way to recovery. I feel so bad for you! I am keeping you in my thoughts and prayers. Get well soon! And thanks for letting us know.....
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Old 11-14-2012, 07:31 PM #97
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So sorry to hear this, romans8!!!! Thankful they didn't find any other problems, though! What rotten luck.
Here's hoping this is the last bit of bad luck for you for awhile! And (I have to say it) you should ALWAYS listen to your wife!
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Old 11-15-2012, 05:39 PM #98
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So glad y'all caught it. Take care of yourself Romans8.

On another note, I went to my neurologist to get some more pain meds to last me until I have my surgery on 12/5. And my neuro told me that he strongly discourages me from having the surgery and that I'll end up on disability. And I said, well, you see my position, a life on pain meds is no way to go either. He agreed but he said he's never seen it turn out well. He hadn't heard of Dr. P, but he asked me if i had seen any of his patients after a year because that's when the scar tissue would have built up. Do y'all know of anyone who had the surgery with Dr. P a year ago? I'm just freaking out bc I made my decision, and then to have someone come in and question it does shake me a bit.
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Old 11-15-2012, 07:12 PM #99
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I feel bad that you had to go through all of that especially since you had already made up your mind and had peace about your decision. I don't know anyone that is a year out from surgery done by Dr Pearl, but there are several Ranger players who have had it done by him. I have tried to read everything I could about these players, but they don't tend to talk about it. Matt Harrison is one you can google. He had it done with Dr Pearl back in 2009 and he is still pitching and can throw faster than he did before.Kenny Rogers had the surgery before him. Why don't you call Dr Pearl and talk to him about your concerns....I have wondered the same things, but who do you ask? My daughter ran into a lady at college who had the surgery (not with Dr Pearl) but at Baylor and she had nothing but bad things to say.....that scared us, but really what is the choice...I'm scared too, but my daughter is at the point that she just wants to be out of pain and be back to normal. I just have to have faith that we are making the right choice. We were referred to Dr Pearl by a shoulder specialist in Dallas. And we have already done two rounds of physical therapy. Maybe someone will see your post and respond and set all of our minds at ease!
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Old 11-15-2012, 09:38 PM #100
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So glad y'all caught it. Take care of yourself Romans8.

On another note, I went to my neurologist to get some more pain meds to last me until I have my surgery on 12/5. And my neuro told me that he strongly discourages me from having the surgery and that I'll end up on disability. And I said, well, you see my position, a life on pain meds is no way to go either. He agreed but he said he's never seen it turn out well. He hadn't heard of Dr. P, but he asked me if i had seen any of his patients after a year because that's when the scar tissue would have built up. Do y'all know of anyone who had the surgery with Dr. P a year ago? I'm just freaking out bc I made my decision, and then to have someone come in and question it does shake me a bit.
What a crummy situation for you. I guess my first question would be: How many surgeries of this type has your neurologist seen? I mean, if he says he's "never seen it turn out well" and he's only seen two, that's very different than if he's seen 200, particularly if those two weren't performed by experts.

Personally, I had four doctors advise me against surgery; none of whom had more than a passing acquaintance with TOS, two of whom have changed their tune to "I didn't really advise against it; I just didn't feel comfortable recommending it since I'm not all that familiar with the condition," which is total crap. The other two doctors I've not had a reason to see since surgery, and one of them has retired, so I don't know what their responses would be. Because of those doctors, I put off having surgery for years - years that I will never get back, years I spent in constant pain, years that I regret listening to them, taking drug after drug and trying therapy after therapy (and spending a fortune on it!) while my condition steadily worsened.

I have only had the opportunity to talk with one person actually in person who had surgery more than a year ago; she was almost 3 years post-op when I talked to her, and she said that even though her initial recovery was really tough, possibly the worst couple weeks of her life, she was glad now she'd had the surgery and was definitely enjoying a better quality of life. Though she was not a patient of Dr. P's, she did have the surgery done at Baylor.

Reading through this forum, you will find people who were helped by surgery, people who weren't, and people who are worse off than they were before - and people in each category from a variety of different circumstances. The best you can do is research, consult the experts, and go with what your heart tells you is the right thing. It's not a decision anyone else can (or should) make for you.
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