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


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Old 01-03-2013, 04:14 PM #21
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Originally Posted by LiveLoveandTrust View Post
Oh, I did want to mention as well that my range of motion is great. I can easily lift my arms over my head and carefully up behind my back. Out to the side is harder and I can make about a 120 degree angle that way. I would be willing to post a picture of my incision if anyone is interested as it is a transsternal approach. I don't want to gross anyone out there.
I did find out why they cracked the sternum. Apparently, they life it up a bit so they can get the last little bit of rib out from the back and since they were doing both sides at once it needed to be cut. I have pain while deep breathing but only a little. No worse than when I cracked a rib coughing during pneumonia. I can do the blowing exercise thingy with ease (inhaling over 3000 cc's of air) and I could when I'm supposed to without using a pillow because it's just not that necessary. I do have a high pain tolerance, but I can honestly say that I'm quite comfortable.
Sounds like you are doing great. I would be interested in the incision picture (just curious I guess). And am also very amazed at how well your breathing is doing since you had the lung issues. Keep it up, but don't over do it.
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Old 01-04-2013, 11:42 AM #22
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I'm glad everything went well. Sounds like you are doing great with the spirometer. I'd like to see pictures as you are the first person that I know of on this forum to go through this approach.
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Old 01-04-2013, 02:45 PM #23
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Old 01-04-2013, 03:22 PM #24
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Well, things quickly went south here at the hospital. I can say that I still feel the surgery itself was a success. I'm feeling better TOS-wise and my hands/arms are still very warm. I think that, in the long run, this surgery was a good thing.
That being said, I've had IMMENSE issues with the medical staff here. It started right after surgery. The doctor forgot to order my pain pump so I was without it for over 3 1/2 hours while they "sorted it out." Then, my arms went totally numb because of incorrect placement of the lidocaine pain ball. This had to be turned off resulting in more pain but at least I was functional. Then, the next morning after being promised I would be fed breakfast and the doctor changing my orders from liquid diet to a regular one, I still received a liquid breakfast and did not receive actual food until 11:30 am (over 36 hours since my last meal) despite the need for food to sustain lactation and several doctors AND nurses telling me they were getting it and it was on the way. I had noticed that yesterday morning that the girl next to me that had the same surgery on the same day was getting more examination than me. The doctor wasn't checking my range of motion or asking me how I was feeling. He spent significantly less time with me.
What really took the cake happened last night. a resident came in and asked me if there was anything I needed. I had asked throughout the day if I could have some sort of sleep aid or anxiety medication as I had been up the whole night before with what they thought were anxiety attacks and what I thought at the time was pulmonary embolism. Regardless, I could accept that they could be right as I DO have an anxiety disorder and surgery is a major stressor. Well, I was told that they would look into Serax, Ativan or Ambien for me. I looked up how it would affect my baby and was okay with any that they chose. Then, the resident came in and told me she would give me nothing because it is not safe as it is pregnancy class D. I'm not pregnant, I'm lactating, and the medications are in safe lactation categories. They refused to let me take any medication and then tried to bully me into taking an antihystamine to wean. They refused to look up half lives. I dropped it, I'm not going to pretend to be a doctor so I didn't even argue that they were wrong. Instead, she asked me why I thought it was okay in the first place, why I thought I needed something to sleep when I never had needed it before and just got downright nasty to climax with the statement that I must not care about the welfare of my child to put her in this sort of risk. By now, I was hyperventilating, gasping for air, crying and begging her to just leave and give me some space. I really don't think that was too much to ask for but she put me in a place where I absolutely needed the medication (in front of my dad no less!) then walked away. She came back later, and did the very same thing again. Then, changed my medications so my nausea medication was HALDOL which is not okay while breastfeeding and moved me from colace to senna even though I've not complained about constipation. All without my consent. I told her that I couldn't trust her anymore and I wasn't going to use my PCA pump because I needed to be clearheaded to deal with her. By 3am I was asking for a muscle relaxant because I was so stiff but no one would get back to me. At 8am, the doctor seemingly decided to teach me a lesson by taking away my base IV pain medication so I would have to press the button in a power play. By 10am, the only pain medication I was under the influence was, was 2 tylenol. Despite telling everyone who would listen that I was in a boatload of pain (10/10 when I woke up at 3am and 8/10 after having to move around a bit and getting some endorphines flowing by 11am) I was continually brushed off in my concern that I couldn't trust staff to bring me safe medications or to care for me if I was too out of it. The nurses were taking 45 minutes to respond to the call button and then rarely came back to preform the requested task.
I requested a patient advocate or ombudsmen to speak with, and I was told a case coordinator would see me by 7pm today which was A. unacceptable to think it was okay for me to have completely uncontrolled pain for about 24 hours and B. a case coordinator is NOT a patient advocate. The coordinator came in within a half hour after I complained about that and then started asking me if I had a case manager and about setting me up with a social worker. It was obvious they had written me off as loony and weren't taking me seriously.
I ended up calling my mom and stepfather to come advocate for me since no one else would. I felt so bad for my roommate who had to listen to all of this but I know she didn't think I was crazy... I overheard her talking to her boyfriend about how bad she feels for me and she doesn't blame me for being upset so at least I know I'm not crazy. My mom and stepfather had a meeting with the medical providers and made it clear that I'm not crazy, I'm not an idiot, and I do deserve information and a say in my medical care. Things seem to have turned around in regards to their attitudes, but I'm still in a lot of pain and it's so irritating for my roommate to complain of needing to get some sleep so they bring her out some xanax but when my neck muscles are completely spastic and I've tried massage and heating pads that I can't even be considered for a muscle relaxant.
Guess I just needed to vent a bit, the surgeon seems to have done a good job on the surgery thus far but he's really spun my psychological well-being around.
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Old 01-05-2013, 01:43 AM #25
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I'm so sorry you are not getting the treatment you feel you deserve. Sounds like this is a University/Teaching hospital. True?

It is absolutely remarkable that you are able to do so much typing. I hope you can get some pain/spasm/anxiety/sleep relief.
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Old 01-05-2013, 03:06 AM #26
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I'm so sorry you are not getting the treatment you feel you deserve. Sounds like this is a University/Teaching hospital. True?

It is absolutely remarkable that you are able to do so much typing. I hope you can get some pain/spasm/anxiety/sleep relief.
I agree that it sounds like I'm at a teaching hospitals. However, that is false. I'm at Hartford Hospital where they technically are a teaching hospital, however, they don't really let them get too involved as they're teaching the general surgeons/general doctors or something. Anyway, they weren't really involved in my surgery itself (thank god) but are providing most of my care while I'm hospitalized.

I'm trying to keep things in perspective. Even though I have to fight for whatever medication I need and whatnot (last night I got half a pill of baclofen despite my neck being completely seized up) my hands are 100% more functional than they were before surgery. I have more stamina, less clumsiness, and more sensation than i've had in many months. My familiar pain is gone and replaced with new, surgical pain. There are parts of my body that hurt that I just know are related to not having a rib there anymore and needing to adjust.

My chest tube is driving me crazy. The stitches are pulling out of my skin on one side and even though I keep complaining about it, I keep getting a whole lot of "yeah, that could hurt, hopefully your pain meds take the edge off it and they take your tube out later this morning, let me know if I can help with anything!" Ugh. So annoying! YES you could help me by making sure it's not pulling on my skin! I could also use more than half a muscle relaxant.

I think I'm getting released today. After all the issues I've had, I think they want to get me the hell out of their faces.

Anyone who's had a scaleneotomy instead of a scalenectomy have any suggestions for post op neck pain? I could really use them right about now.
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Old 01-05-2013, 01:29 PM #27
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So did the surgeon turn over all the pain relief options & duties to the hospital staff drs/nurses??

If you get released today will you be able to get good pain relief for at home?

I hope all gets better for you.
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Old 01-05-2013, 09:15 PM #28
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So did the surgeon turn over all the pain relief options & duties to the hospital staff drs/nurses??

If you get released today will you be able to get good pain relief for at home?

I hope all gets better for you.
The doctor decided to change the plan. I had been totally open with him about my goals, my breastfeeding plans, my research, and my "acceptable medication list." Apparently, the hospital has a policy that all medication prescriptions must be approved by the hospital pharmacist (ever heard of such a thing??!!) and they kept no-going everything. They were not looking at the lactation recommendations and instead were going by pregnancy recommendations which are completely different. My situation is very different as well because I can schedule my pumps around my doses and my baby is over a year old so she drinks much less milk than an infant and I have a freezer stash to cut the milk 50/50. Her pediatrician, my PCP, the LLL, the infantrisk Center, and Dr. Hale's research all backed me up.
My surgeon then backed his resident who was completely inappropriate to me and even fired me as a patient. I'll have to see a different thoracic surgeon for my post-op. My parents ended up having to come to the hospital to advocate for me and convince them that I'm not some crazy person nor am I a drug seeker. I just needed some relief and respect. That worked well for the medical staff on that shift, but everything went back downhill once the shift changed. I was refused a muscle relaxant for a long time and when they did bring it up, it was such a ridiculously small dose it was literally laughable. They gave me half a pill of the smallest dose available. When the staff from the original shift were back this morning, they upped my dosage and decided to discharge me as my fluid output levels from my chest tube were low and they recognized I'd get better care at home and would heal better if I wasn't so stressed and I could actually sleep.
So here I am, I was given 2 days worth of narcotic pain relief and 10 days worth of muscle spasm medication. I've reduced how much I'm taking to make it last and I think my PCP will be helpful if I need him especially with the muscle relaxant. I have a high pain tolerance, so I'm doing okay. I'm down to 10mg of Baclofen every 8 hours and 2mg of Dilaudid every 4ish hours. Also, 2 tylenol every 4 hours.
Some numbness has returned to my arms. My forearms are almost completely numb as well as my right pinky. I'm also getting some numbness of my lower face, shoulders and upper arms. I'm hoping that it's just part of the healing process and that these sorts of symptoms will come and go during the first weeks.
My left pec minor is very sore and aches down into my arm. My incision site feels great and isn't bothering me at all unless I poke at it. My left scapula is quite a bit sore too and my entire neck is VERY stiff. If I'm still though, I'm quite comfortable.
I don't have a lot of stamina, but I have been able to successfully shower, dress myself, and got some grocery shopping done (in a scooter of course). I can raise both arms above my head and up behind my back. I'm obviously able to type with little difficulty- much less than before my surgery.

Does anyone who's had bilateral 1st rib resections done know if you have that weird "caved in" look under your collar bone forever? I don't know if I'm just swollen or if it really is caved in. It looks...sickly... and I'm hoping that it goes away.

Thank you all for being here for me. I've really valued your listening ears.
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Old 01-06-2013, 09:23 PM #29
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Things I never thought I'd be able to do while recovering from bilateral first rib resection surgery that I'm capable of...

Shaving my armpits (been doing it since the day after surgery)
Typing on the computer- easy ever since getting the pain ball out.
Washing my hair- tricky, but doable.
Putting on a bra (was told to wear one to minimize the scaring of a transsternal incision)

Just thought I'd post a couple examples so those looking at having surgery can prepare. Both of my arms were affected by surgery and I am able to do many things! That doesn't mean that it will be the same for everyone but I know that, personally, I'd like to be able to prepare for everything because if I can shave my armpits, that's definitely going to happen.
So for those of you going into surgery and getting ready to pack your bags... I recommend bringing things that will make you feel better about yourself (for me, it was hygiene stuff) and you may be surprised what you're able to use. I also recommend bring (if you're a woman) vaginal wipes because bed pans are yucky and if you can't shower while having a chest tube it's nice to feel fresh, very good quality shampoo and conditioner so someone else can easily brush/wash your hair with minimal tangles, body WASH so it can be put on a loofa, a loofa on a stick, bring something to get hospital sticky stuff off of you- it was driving me crazy and I had nothing, your own toothbrush and toothpaste because their stuff is crappy and falls apart in your mouth, your own slippers that slip on so- hospital socks never fit right and are hard to get on by yourself, a razor, and if you have silky pajamas- that makes life so much easier to get in and out of bed on your own when you're ready.
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Old 01-08-2013, 09:42 PM #30
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Originally Posted by LiveLoveandTrust View Post
Things I never thought I'd be able to do while recovering from bilateral first rib resection surgery that I'm capable of...

Shaving my armpits (been doing it since the day after surgery)
Typing on the computer- easy ever since getting the pain ball out.
Washing my hair- tricky, but doable.
Putting on a bra (was told to wear one to minimize the scaring of a transsternal incision)

Just thought I'd post a couple examples so those looking at having surgery can prepare. Both of my arms were affected by surgery and I am able to do many things! That doesn't mean that it will be the same for everyone but I know that, personally, I'd like to be able to prepare for everything because if I can shave my armpits, that's definitely going to happen.
So for those of you going into surgery and getting ready to pack your bags... I recommend bringing things that will make you feel better about yourself (for me, it was hygiene stuff) and you may be surprised what you're able to use. I also recommend bring (if you're a woman) vaginal wipes because bed pans are yucky and if you can't shower while having a chest tube it's nice to feel fresh, very good quality shampoo and conditioner so someone else can easily brush/wash your hair with minimal tangles, body WASH so it can be put on a loofa, a loofa on a stick, bring something to get hospital sticky stuff off of you- it was driving me crazy and I had nothing, your own toothbrush and toothpaste because their stuff is crappy and falls apart in your mouth, your own slippers that slip on so- hospital socks never fit right and are hard to get on by yourself, a razor, and if you have silky pajamas- that makes life so much easier to get in and out of bed on your own when you're ready.
Hi, how are you doing now? I also had bilateral rib resection, but had two separate surgeries two days apart, my incisions are under my armpits. My surgeries were December 3 & 5 2012, so I am just over a month into recovery and doing pretty well, but still experiencing arm pain, particularly in my elbows.
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