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

Getting nervous

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Unread 12-05-2012, 09:04 PM   #1
LiveLoveandTrust
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Default Getting nervous

I've met with one of my surgeons so far and he's decided that my only option is surgery to correct my TOS. I'm not really quite sure how he decided that for himself since he barely examined me didn't do any testing.
My concern is not that he's wrong about TOS, I've been diagnosed with it before in 2008, my symptoms are classic, everything else has been ruled out by other specialists, and I've already completed many rounds of different types of physical therapy with no results. I am concerned about how he could know that I need a first rib resection (no mention of scalenectomy but obviously very rushed with me and the hospital website does say that they treat TOS with a first rib resection and scalenectomy) or be prepared for preforming the surgery without any real imaging. I've not even been diagnosed with a TYPE of TOS though my symptoms point to arterial and neurogenic.
I meet with the other surgeon on the 14th and he is aware that I need a surgical consult and I've been told they do a complete job with that so I'm keeping my fingers crossed that this is a better experience and the other guy just had poor bedside manner. Unfortunately, I'm on Medicaid and these surgeons are my only option. Fortunately, they have absolutely fantastic records and reviews from other patients.
Can someone tell me if there are any tests I should absolutely insist on prior to surgery to make sure I (they) know what type of TOS they are dealing with and where, exactly, the compression is? I guess I'm very concerned that they just assume that it's classic TOS when I also have very tight pec minors and feel like I'm being stabbed in the armpit all the time. I don't want to go under the knife 20 times to get this all figured out, I want them to do only what they need to do and get it right the first time! As it is I have bilateral symptoms so I'll have to go at least twice. I want to feel better!
Also, if you feel comfortable, please give me a list of any medications you were prescribed before/during/after surgery so I can do the research on the different meds in regards to breastfeeding. I know every doctor does it differently, I just want to have some sort of idea of what to expect. Thank you in advance! You guys are wonderful.
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Unread 12-06-2012, 07:49 AM   #2
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I think you should think about re-framing this. You stated previously that this doctor squeezed you in and did not really have time to see you. The thoracic surgeon that you will see will spend more time discussing the surgery with you I am sure. Bring a list of all of your questions. Many of the issues cannot be detected until they actually open you up. that is why it is important to have skilled surgeons who can make the decisions then about what to do. If you read many of the posts here, you will see that people report that over and over. Try not to worry- you will have your surgical consult next week and then you can decide what to do.


Quote:
Originally Posted by LiveLoveandTrust View Post
I've met with one of my surgeons so far and he's decided that my only option is surgery to correct my TOS. I'm not really quite sure how he decided that for himself since he barely examined me didn't do any testing.
My concern is not that he's wrong about TOS, I've been diagnosed with it before in 2008, my symptoms are classic, everything else has been ruled out by other specialists, and I've already completed many rounds of different types of physical therapy with no results. I am concerned about how he could know that I need a first rib resection (no mention of scalenectomy but obviously very rushed with me and the hospital website does say that they treat TOS with a first rib resection and scalenectomy) or be prepared for preforming the surgery without any real imaging. I've not even been diagnosed with a TYPE of TOS though my symptoms point to arterial and neurogenic.
I meet with the other surgeon on the 14th and he is aware that I need a surgical consult and I've been told they do a complete job with that so I'm keeping my fingers crossed that this is a better experience and the other guy just had poor bedside manner. Unfortunately, I'm on Medicaid and these surgeons are my only option. Fortunately, they have absolutely fantastic records and reviews from other patients.
Can someone tell me if there are any tests I should absolutely insist on prior to surgery to make sure I (they) know what type of TOS they are dealing with and where, exactly, the compression is? I guess I'm very concerned that they just assume that it's classic TOS when I also have very tight pec minors and feel like I'm being stabbed in the armpit all the time. I don't want to go under the knife 20 times to get this all figured out, I want them to do only what they need to do and get it right the first time! As it is I have bilateral symptoms so I'll have to go at least twice. I want to feel better!
Also, if you feel comfortable, please give me a list of any medications you were prescribed before/during/after surgery so I can do the research on the different meds in regards to breastfeeding. I know every doctor does it differently, I just want to have some sort of idea of what to expect. Thank you in advance! You guys are wonderful.
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Unread 12-06-2012, 01:28 PM   #3
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Are you breast feeding now, and plan to continue after surgery?
I may have missed the timing on that.
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Unread 12-06-2012, 01:42 PM   #4
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Quote:
Originally Posted by Jo*mar View Post
Are you breast feeding now, and plan to continue after surgery?
I may have missed the timing on that.
Yes, I am currently pumping for my baby (she never learned to feed at breast due to prematurity) and I plan to continue doing so if at all possible afterwards. A lot of medications can be safely used while breastfeeding (even morphine, surprisingly) but a lot of medications also cannot. I have 50 days worth of milk in the freezer and, as she will be 15 months old so I have options. I'd just prefer to do the research before surgery so I can think clearly.
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Unread 12-06-2012, 10:54 PM   #5
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You are right. Morphine is ok. Moms with c sections can take it post delivery and nurse. Can you ask your pediatrician for a list?

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Originally Posted by LiveLoveandTrust View Post
Yes, I am currently pumping for my baby (she never learned to feed at breast due to prematurity) and I plan to continue doing so if at all possible afterwards. A lot of medications can be safely used while breastfeeding (even morphine, surprisingly) but a lot of medications also cannot. I have 50 days worth of milk in the freezer and, as she will be 15 months old so I have options. I'd just prefer to do the research before surgery so I can think clearly.
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Unread 12-07-2012, 10:16 AM   #6
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Originally Posted by Iris View Post
You are right. Morphine is ok. Moms with c sections can take it post delivery and nurse. Can you ask your pediatrician for a list?
I can, but I trust my own research more since the physician's desk reference is really not very accurate in terms of what's safe and what's not. It just wasn't tested so it doesn't have the information. Dr. Hale has the best information since he's the only one testing anything. It would be easy for me to look up all the pain killers but I don't know what else people may have had to take (blood thinners, antibiotics, antinflamitories, muscle relaxants, anti-anxiety...) all of a sudden that leaves me with a list that is huge so I was hoping that I could get an idea about what to expect level-wise (post op morphine or percocet?) you know what I mean? Then it would make my work a little easier. It's not always easy to do all this typing!! :-)
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Unread 12-07-2012, 12:14 PM   #7
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I was thinking it would be very hard to hold a baby for breastfeeding post op, but pumping would be more doable.
I don't know how full you will get before you can pump again post op, but that extra fullness & swelling will make for more discomfort and pulling on the surgical areas.

Does the surgeon &/or OB/GYN have any thoughts about breast feeding and surgery?
Perhaps call a lactation center and ask them about concerns with surgery& post op reocvery in that area of the body.

You could also keep pumping and toss the milk that may have the stronger drugs in it, then after x amount of days/weeks it should be safe again.
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Unread 12-07-2012, 03:05 PM   #8
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Quote:
Originally Posted by LiveLoveandTrust View Post
I can, but I trust my own research more since the physician's desk reference is really not very accurate in terms of what's safe and what's not. It just wasn't tested so it doesn't have the information. Dr. Hale has the best information since he's the only one testing anything. It would be easy for me to look up all the pain killers but I don't know what else people may have had to take (blood thinners, antibiotics, antinflamitories, muscle relaxants, anti-anxiety...) all of a sudden that leaves me with a list that is huge so I was hoping that I could get an idea about what to expect level-wise (post op morphine or percocet?) you know what I mean? Then it would make my work a little easier. It's not always easy to do all this typing!! :-)
I am 3.5 weeks post-op and had a first rib resection, scalenectomy and pec minor release/tenotomy.

I was put on a Morphine PCA pump so I could press the bolis each time I wanted extra meds. I was also given a combo of Toradol, Tramadol, Zanaflex/Tizanidine, Ibuprofen (800mg), and Zofran/Phenergan for nausea on top of the morphine drip that was spread out throughout the day. This combo really helped to manage the pain post-op while in the hospital, although I would still say the pain was between a 5-8 most of the time. On day 3 I was given colace to take daily along with magnesium for constipation. I did have to use Miralax a few times around day 7-9 post-op for constipation as well. Once I started coming off the meds, the constipation was better. I hope this list helps you.

I am currently taking Tramadol for breakthrough pain, and take the tizanidine/zanaflex (muscle relaxor) along with prescription strength ibuprofen (800mg) as needed. It usually amounts to 1-2 of the muscle relaxers and 1-2 of the ibuprofen daily. I've taken the Tramadol only 1 time a day the last week, with some days none at all. I also have compound pain cream that I used for the arm and scapular pain. I got this from my pain management doctor that uses a specialty pharmacy.

I hope this list will help you get started. P.S. I tend to get really nauseous with Vicodin, hydrocodone, percocet, etc. so I specifically chose to not use any of those.
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Unread 12-07-2012, 10:44 PM   #9
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Thank you very much guys!
Jo*mar, I should be good with pumping. I only need to do it twice a day and I'm sure my surgery won't be all night so I shouldn't get engorged. My surgeon said that he thought that it would be manageable if I pumped one breast at a time. I'm open to the idea of weaning if need be, but I'd prefer not to.
Thankful For Hope, Thank you so much for that list! That definitely gives me a good idea on where to start. I tend to metabolize drugs fast and efficiently so I don't usually get nauseous so hopefully I can get around the Zofran though that is safe while breastfeeding I've been told. The same with colace/mag. There's not much in the way of muscle relaxants that are safe but the half life means I'd only have to dump for 3 days after my last dose. I can always save that milk and make soap out of it instead (god I hate dumping!) I'm allergic to Tramadol but Vicodin works well for me (percocet and hydrocodone I don't respond well to) so hopefully that can be my take home med. I wish the tramadol was still an option for me- it works phenominally until I started getting itchy and having difficulty breathing :-(
Thanks!!
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