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


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Old 10-10-2012, 04:31 PM #41
Nottherightkindofdr Nottherightkindofdr is offline
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Default Shut out!

Chris Carpenter pitched a shut out this afternoon! YAY!
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Old 10-10-2012, 09:05 PM #42
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Thanks, and same to you (re: your Dec appt/surgery and progress)! :-)

To mytea: I've PM'd you; try seeing if you can reply back now.
I cannot PM you back yet as I have to post at least 5 messages before I can do so! I will definitely be in touch with you shortly! Thank you so much for responding back to me as I thought you might not see it. I am so happy that you are doing so well. Be in touch soon...

Mytea
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Old 10-10-2012, 11:24 PM #43
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To Romans8: When are you having your appointment? I'm crossing my fingers that yours goes as well as mine did!
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LH,

My appt. is October 15. They offered a way to do it all in one trip but we decided to see the doctor first and then schedule the surgery a few weeks later if it is confirmed. Thank you for your last post describing your recovery as it sounds like our cases are similar. The pain in my right medial scapula is by far the worst part of all of this. At times it explodes into the entire region. When this happens my shoulder actually collapses and is 82 or 3 inches below my left side. This seems to crush many nerves and is really the only time my right arm gets involved. I have significant atrophy on the right side (neck, trap). Nerve studies have always been negative until the last one showing abnormal dorsal scapular and long thoracic which correlate with the scapular pain. I am expecting a long recovery after the surgery but that's ok. I lost my job because of the longevity of this but I am fortunate to have good disability insurance.

I am getting some benefit from a botox injection I received in August. It is not dramatic like the scalene block but I would say 30 - 40% relief. I am hoping to get the surgery scheduled very soon after this wears off as I am dreading the return to where I was. I am told it can give up to 3 months relief.

What is really weird with my case is how I have developed it bilaterally this year. The right side started 7 years ago and my left side has never had any problems until the last six months and now I cannot raise my left arm above my shoulder. I was told this could be a compensating thing or I could have TOS on both sides. It is deteriorating fast and I am becoming more concerned that I will have to have the surgery on both sides. However if it gives good relief on the right I would not hesitate to repeat on the left when it becomes feasible to do so.

Again I cannot tell you how grateful I am to have you sharing your road on here and please continue. My heart goes out to all of you who are suffering with this. DO NOT GIVE UP. I do not understand why more doctors cannot detect this condition and some do not even believe it is real. However all things happen for a reason and this is no exception.

Do you have any recommendations on a place to stay while there? The administrative person sent me a list of hotels and the prices were very reasonable. I am going by myself the first trip and hope to avoid renting a car as driving in unfamiliar territory in my condition is not wise.

I'm new to this site, quite glad to have found it. It's nice to here from other people with the same or similar symptoms as me. I have had 4 cervical surgeries to date. My left hand middle, ring and pinky fingers have had numbness since surgery two. Left arm pain, shoulder pain, pain at the base of neck, under my arm pit, in the front of shoulder where deltoid and collar bone meet... my right shoulder is more painfull that the left. I used to be a workout machine but after surgery 2 that came to an abrupt halt. i havent been the same since. Over the past year and a half my right arm has developed the same symptoms as the left with exception of the continuous numbness. I did come across a doctor named Tollestrup in Las Vegas where i live. He is a periphrial nerve surgeon who happened to do his nerve fellowship at Baylor. I have a follow up with him in the morning to ask him a bunch of questions before I decide whether or not i want to let him do a scalenectomy on me. If anyone has any information about him i would greatly appreciate it. Sorry about any typos, hard to see on my phone
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Old 10-15-2012, 07:26 PM #44
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Marc - it's interesting you say that; my left ("good") side flared up a little during this virus, and I was already sore from work. I was attributing the left side flare up to laying around in bed for days on end, but maybe it also has to do with systemic inflammation caused by illness?

tosmother - I have not had my recheck appointment yet. I was supposed to have it next week, but my ride weaseled out on me, so now I'm going on the 24th. Other than this virus, I've been doing okay. I had a rough week at work that left me sore, but not like what I was experiencing prior to surgery so, yes, still very glad I had the surgery. :-) I was feeling pretty discouraged when I got sore and sick at the same time, initially blaming the soreness/pain for the fact that I felt crappy all over. Prior to surgery I did have pain episodes so severe that they caused fever spikes, nausea and vomiting, and I was scared that was starting to happen again - it was almost a relief to find I had a virus.

I am in Dallas. I saw Dr. Pearl today. He confirmed TOS and I will set the return trip and surgery date tomorrow. It may be as quick as Oct. 29.

I am watching the baseball playoffs on TV from hotel room. Guess who is pitching for the Cardinals? Oh no! He just gave up a lead off HR! I asked Dr. Pearl about him today. He smiled and said he was doing fine but returned to very soon afterwards. They are talking about the surgery on TV now.

Have you recovered from the virus? Are you still doing well with recovery?
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Old 10-15-2012, 10:16 PM #45
Nottherightkindofdr Nottherightkindofdr is offline
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Romans: glad to hear the consult went well. Keep us updated. What tests did you take to Dr Pearl? I have a inconclusive EMG and I'm worried he's going to order another even though I have cervical ribs.
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Old 10-16-2012, 02:10 PM #46
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Originally Posted by romans8 View Post
I am in Dallas. I saw Dr. Pearl today. He confirmed TOS and I will set the return trip and surgery date tomorrow. It may be as quick as Oct. 29.

I am watching the baseball playoffs on TV from hotel room. Guess who is pitching for the Cardinals? Oh no! He just gave up a lead off HR! I asked Dr. Pearl about him today. He smiled and said he was doing fine but returned to very soon afterwards. They are talking about the surgery on TV now.

Have you recovered from the virus? Are you still doing well with recovery?
How did he confirm TOS? How Did you like Dr. Pearl? And does he specialize in Neurogenic TOS? its just so impressive how chris carpenter is already back to pitching. There is another pitcher in the news:Mike Adams from the Texas Rangers who is going to have surgery in Dallas too. i am assuming tit is also with Dr. Pearl but I havent seen that confirmed anywhere yet.
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Old 10-16-2012, 06:23 PM #47
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Originally Posted by romans8 View Post
I am in Dallas. I saw Dr. Pearl today. He confirmed TOS and I will set the return trip and surgery date tomorrow. It may be as quick as Oct. 29.

I am watching the baseball playoffs on TV from hotel room. Guess who is pitching for the Cardinals? Oh no! He just gave up a lead off HR! I asked Dr. Pearl about him today. He smiled and said he was doing fine but returned to very soon afterwards. They are talking about the surgery on TV now.

Have you recovered from the virus? Are you still doing well with recovery?
Yes on both counts, although being laid up with the virus made me miss four days of my at-home exercises, and I paid for it when I started them up again. I am actually champing at the bit for my followup as I hope to be released from restrictions and start trying to get things back to normal.

I'm glad you got "news you can use" from the good doctor! Wow, October 29 - are you ready??
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Old 10-17-2012, 08:08 AM #48
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Yes and no. I have been through a lot of surgeries and fear this one more than any even though this one may finally be the one that deals with the root cause. What I am most concerned about is flying home three days after surgery. What kind of shape were you in three days post-op? Also does he have to see you that morning before you can go home? Can you describe for me what the first few days were like? They told me I would spend two nights in the hospital because I am from so far away and one in a hotel.

My wife will be with me and I am trying to decide where to get a hotel room. It may be best just to stay at the hotel attached to the complex. I know you said you stayed there and it was ok. I stayed in the Market Center area this past trip and it was ok but there was nothing you could walk to for anything. I am not sure there is an area of Dallas near downtown that is like that.

I have TOS bi-laterally and he said he hoped physical therapy will make the secondary side clear up. I hope he is right because I cannot raise that arm above my shoulder. Are all the PT exercises home exercises?

My surgery is confirmed for Oct. 29. I hope you continue to do well and thanks for all of the information. I do have one more question. You said you are going back for a follow-up. How far out is that after surgery?

I know I have peppered you with a lot of questions so I guess that answers your question about my anxiety level. Thanks LH for all you have shared.
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Old 10-20-2012, 06:54 PM #49
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Originally Posted by romans8 View Post
Yes and no. I have been through a lot of surgeries and fear this one more than any even though this one may finally be the one that deals with the root cause. What I am most concerned about is flying home three days after surgery. What kind of shape were you in three days post-op? Also does he have to see you that morning before you can go home? Can you describe for me what the first few days were like? They told me I would spend two nights in the hospital because I am from so far away and one in a hotel.

My wife will be with me and I am trying to decide where to get a hotel room. It may be best just to stay at the hotel attached to the complex. I know you said you stayed there and it was ok. I stayed in the Market Center area this past trip and it was ok but there was nothing you could walk to for anything. I am not sure there is an area of Dallas near downtown that is like that.

I have TOS bi-laterally and he said he hoped physical therapy will make the secondary side clear up. I hope he is right because I cannot raise that arm above my shoulder. Are all the PT exercises home exercises?

My surgery is confirmed for Oct. 29. I hope you continue to do well and thanks for all of the information. I do have one more question. You said you are going back for a follow-up. How far out is that after surgery?

I know I have peppered you with a lot of questions so I guess that answers your question about my anxiety level. Thanks LH for all you have shared.
I'm sorry you're feeling anxious about your surgery.

No, he does not have to see you after you leave the hospital. They just want you nearby in case of complications. How long is your flight? I think that would be a determining factor for me if I were trying to decide when to fly back home. I made the 2 hour ride home fine on day 2, but I wouldn't have wanted to have to handle five hours or multiple layovers stuck in an airport. Three days post-op, I pretty much just wanted to lie down and sleep and take pain drugs, so I don't remember a whole lot about it.

You probably have a better idea of how you might feel about traveling since you've had prior surgeries; the deciding factor is ensuring that your pain is under control - the staff at Baylor take this very seriously, so don't hesitate to speak up if it's not controlled - remember, it's easier to prevent pain than get rid of it once it's happened, so don't try to be a hero. If you stay at the Baylor Park Plaza, you can extend your stay from day to day - they don't take reservations and don't boot people out - and go home when you feel like you're ready.

Immediately after awakening from surgery was the worst part for me, before they figured out that their fentanyl combo was doing nothing and they needed to switch to hydromorphone. Once they had that in my patient-controlled pump, things were easier - although the hydromorphone made me feel hot and itchy (but it was worth it). The first 8-12 hours post-op, the medial border of the scapula gave me a lot of trouble; ice packs helped a lot. They offered me hot packs, but I felt so hot from the drugs that I wouldn't consider it. Have your wife turn the A/C to COLD as soon as she gets to your hospital room! After 12 hours or so, things with the shoulder calmed down and I was actually more preoccupied with the discomfort from the chest drain tube than the surgical site or typical TOS pain.

At two weeks, I started PT twice a week 8 weeks; now just home exercises. I was supposed to see Dr. Pearl at the 10 week mark, but my ride weaseled out so it'll be closer to 12 weeks.
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Old 10-23-2012, 03:27 PM #50
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Losinghope:

Good luck tomorrow at your appointment with Dr. Pearl. Hoping for great news...I hope you will report back to us
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