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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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11-01-2007, 04:12 PM | #1 | ||
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Hey Everyone,
I wanted to share some news that I got today. Remember back in Sept when I went to see the surgeon in Edmunston? Well he called me today. He said he has researched the options for my surgery and spoke with other doctors. He said my best options are with Dr Bethune and that he is the best in the field for this type of surgery. Now, the real news. He called Dr Bethunes office to discuss me and the wait time. He told them I was getting worse and needed the surgery done ASAP. He told him they would try their best to have me in by the end of 2007...thats only two months. They are putting me on the cancellation list and will call me as soon as a spot pops up. This is wonderful and I am excited!!! However....I have a trip, my first vacation ever with my family, planned on Dec 27 to Jan 5 at Disney World. I did email Dr Bethunes office with every number possible and did mention that I had a trip planned. I will give the trip up if I need, thats how desparate I am to get this done, but if I do get it done before I go...what are the odds I could go to Disney World? HOw would I feel?? I am excited and the thought of getting this moving as pain is terrible daily.... Talk to you soon RAch
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"I am not in this world to live up to other people's expectations, nor do I feel that the world must live up to mine." ~Fritz Perls~ |
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11-02-2007, 07:09 AM | #2 | ||
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In Remembrance
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gosh Rach,
everyone is diff. I think it took me one month to even be able to go to the bathroom right... My TOS surgery went FINE. BUT. My meds didn't. My kidneys didn't. Those weren't the surgeons fault - it was work comp fooling around and not auth. meds on time, then when they did, the kidneys were already compromised again...from being in pain, n/ using the bathroom right... I'd DO THE SURGERY and not worry about the trip. Take it one day at a time after the surgery. I know one girl who had her TOS surgery with me, and she was OUT FOR DINNER four days later. She was only in the hospital three days. She had a pretty good outcome - not cured, but she drives, etc. Do a thread when you go in, if you want some prayers your way, ok? |
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11-02-2007, 11:36 AM | #3 | |||
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I agree with Tam , if the surgery options comes up might be best to do it then.
And just see how you feel, or maybe the trip could be rescheduled or another one planned in the future??
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11-02-2007, 05:13 PM | #4 | ||
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Rachel - If you want to go along and hang by the pool, go out for dinner, maybe see a show or two or go to one of the 3D movie experiences, I'd say GO! The warm weather and company may be a nice way to relax and reward yourself, and you won't have to worry about cooking or housekeeping.
But after just having that surgery done, I'm not sure riding the majority of the rides wd be the best idea. No roller coasters or thrill rides anyway, you won't want to throw your arms up, I guarantee you. And any kind of harness straps over your shoulders would also be not great just a few weeks post-op, I'm thinking. That wd be my biggest concern, is not doind anything to undo the surgery results. Second, I wd request a wheelchair for inside the park use, depending on how you are feeling. I wouldn't have been able to handle all the walking and/or standing in line even at 4 weeks out, although I was starting to feel reasonably human by then. Just didn't have the stamina rebuilt yet. Be sure to ask your surgeon specifically about Disney World and the rides as he may have definite restrictions about which kind to avoid and which type are ok. What a great time to go! Best wishes, beth |
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11-02-2007, 07:31 PM | #5 | ||
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No worries about me getting on rides, I have no intentions of getting on any rides either way as I know how I would feel. All I can do think of how close I am to getting this over with. I know I shouldn't bank on the pain being gone, but if I don't do the surgery, it WON"T ever be gone....I will be sure to let you all know when it happens because I know I will be nervous as heck and will need all your support, advice and tips!! I don't want to ruin this trip for my kids, but I'm not turning down the chance to get this done and over with either. I ill just have to figure it all out as I go.
Rach
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"I am not in this world to live up to other people's expectations, nor do I feel that the world must live up to mine." ~Fritz Perls~ |
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11-03-2007, 07:52 AM | #6 | |||
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Rach, this is awesome! A Dr advocating for you!!!
If it were me, I'd cancel the Disney trip. You could hang in the room, but you'd be far more comfortable at home. No maids coming in to clean while you're asleep, all your choice comfey balnkets, clothes and pillows available, frozen peas in your freezer... and most importantly, you'd be closer to your Dr/Hosp in case any complications arise. Sitting in a theatre!? with your head tilted up and still for an hour or more??!! NO WAY JOSE!!! You aren't going to like that I promise. just my 2¢ Anne
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11-03-2007, 09:08 AM | #7 | ||
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Anne,
I wish it was that simple....we have booked our trip almost a year ago with two other families. We have rented a house and vans etc...with everything all ready paid for. I have insurance on the flights, but the rest was all split three ways. That makes it tough....that and the thought of being the reason the kids would be dissapointed. I have some many times ruined things we were doing as a family because of how I felt....it really makes me sad to think of the times I changed plans, cut plans short, or didn't do things with the kids because I was hurting so darn bad. If I end up having the surgery before I go, I will do wheelchair or whatever I have to do to make this trip for them. This nightmare has been 5 years!!!! I was very surprised that Dr Aucoin researched this as much as he did. I thought he forgot all about me because I hadn't heard from him. He called numerous Thoracic surgeons to help find one to treat me and as he said...everything pointed back to Dr. Bethune, he was the best. I was surprised he made such an effort for me.... Rach
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"I am not in this world to live up to other people's expectations, nor do I feel that the world must live up to mine." ~Fritz Perls~ |
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11-03-2007, 10:45 AM | #8 | |||
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I'll pray that everything works out for you.
Good Luck!!! Judy
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11-03-2007, 12:07 PM | #9 | ||
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Thanks Judy.......
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"I am not in this world to live up to other people's expectations, nor do I feel that the world must live up to mine." ~Fritz Perls~ |
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11-05-2007, 12:05 AM | #10 | ||
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Hi Rachel,
I was just reading your post and coudln't help but feel your pain.... I recently put my surgery off until the 1st of Jan because of things going on with my kids....I say you explain to your Doctor ( who will understand ) and go on your trip and enjoy yourself, knowing that when you return you will have your surgery and hopefully be feeling better shortly after.....Disneyland/Disneyworld is a wonderful place to be with your family...even when you hurt. Good Luck and Best Wishes |
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