NOLA in September?
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Jeskachi, TimTam's site is for reconstruction photos? I didn't now about it. Where is it?
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Besa - Just send TimTam a private message - she has to clear you and give you log in information - then you can go from there!
As for compliments regarding our reconstruction: my local PS now refers women wanting to use their own tissue for reconstruction to the Center. And last week I had my follow up Dexa scan (ugh - such not good news - really need to up my vitamin D as I lost a few points, although still osteopenic, so trying to reverse!)... anyway - and the technician is a BC survivor. We were talking - she had a TRAM flap and said she would at least like them to match more because they really don't. I asked her if she wanted to see mine - she was in complete awe. In a sense, I felt really, really bad... because after that she said, "I don't even want you to see mine. They just look aweful. And in comparison to yours, they look even worse." I gave her Dr. S's information, but she didn't sound like she would call. She has the same insurance I do... and well... we all know how THEY are about breast reconstruction/revisions. I was very, very sad for her. I think she should at least try to get what she wants... but some people aren't up for the fight... You know what I mean? At the same time, she has every right to be whole again... and it just makes me so angry and want to get our insurance company in trouble with the govt. (they are self funded so they are governed by the US Dept. of Labor). I still consider it a complete miracle that I ever got my reconstruction covered at all... grrrrrrrrr!!!
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Has anyone stayed at the
Recommended? Thanks for any info! (c:
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Point of post-surgery ... please noite I am at a conference in Montreal and don't have my papers with me! When can one have a bath and/or swim post-surgery? After drain removal? Thanks. After my workout this afternoon, I'd kill for a hot soak, but still have the drain in (though output has significantly diminished with the new smaller DOM!) Should be able to have drain out when I get back home on the 28th. One presentation tomorrow, one the next day ... nervous. Been a while ...
Thanks!
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Adriene..i was just looking at the same hotel for the night prior to surgery!
To all you experienced girls who work, about how long was it before you could go back to work after stage 1? I am only part time and sit at a desk and work at the computer all day. Since i had so many problems over the summer i have almost used all my allotted medical leave. I would have received my new allotment on my "anniversary" date however i will not be working on that date and that is a stipulation. In order for me to recieve new medical leave, i will be required to work 60days w/o a day off....for me that would be 20 weeks! What happens when you run out of ML??? They terminate you. So you can understand my worry:)
Thanks,
Michelle
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Maggie... NO BATH... until you are drainless and all healed up.
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Brenda, I am having myofascial work done too. I had a lot of surgery (lipo and revisions) and my abdomen has a lot of scar tissue, more on the left side. I've had two sessions so far and they seem to have helped a little, but I think I have a long way to go. I stretch as much as possible, drape myself over a huge ball, dig my fingers into the hard areas and rub in circles, and I do reverse crunches to break up as much as I can on my own. I hope that someday the constriction will be a thing of the past because I think it's affecting my back as well.
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Michelle.. I may not be the best barometer as i had MX/hip flaps, a complication and then DIEP flap... after the DIEP flap and no complications, I went back to work at 5 weeks... but had I needed to, probably could have gone back at 2-3 weeks... I still had drains and compression and didn't want to go to work with those things, but I had them due to my hip flaps, not DIEP... During those 5 weeks, I would get tired, so the days seemed long when I went back... so go back but take it slow and if possible take a nap. I work at a school, so had I wanted I could have gone to teh nurse to nap, but didn't. Also, you can't lift, so as long as you are resting an dnot lifting, it should be ok.
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thanks Betsy! That makes me feel a little better...i was thinking for some reason 8-10 weeks...I would go crazy first off and also would have no time left for stage 2:( I totally understand complications...i had my share this summer when this whole saga began..7 surgeries later...all from stupid reconstruction failure...10 years later!
Hope you are doing better...i know you have had a rough go at it. Oh, i almost facebooked you:) but then got interupped by my 5 year old LOL
Thanks again, Michelle
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Facebook me
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mamma2four- I had unilateral hip (gap?) flap stage one on September 21st and I am going back to work tomorrow. (so that is about 4 1/2 weeks). I feel completely fine but need to wear the compression garment for a few more days and of course still no lifting over 10 pounds. I pulled the drain four days ago. Physicially I think I have had it relatively easy. I could have gone back to work earlier but I wanted to wait for the drain to be gone. At 6 weeks I was told I could go back to regular hard workouts at the gym.
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Only one this week! upcoming...
Oct 27 - KathrynLA - Stage 2b - Dr. S., SCSH, NOLA. Scar removal on Stomach.
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Nobody stayed at the Clarion huh? I will let you know how it is! Good reviews, $89.99 med rate, sounds promising. Kinda freaking a bit now that I'm making arrangements! Excited too. (c:
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Thanks everyone for the positive feedback about the article - I'm making some corrections as it's hard to proof read on a phone while pretending to pay attention to work. Not exactly a story I wanted to tell the whole world but hoping it does help some people.
Finally back home after 2 weeks of hellish work travel and while I've got a ton to catch up on I feel better already. I'm actually pretty amazed that my body did as well as it did with all the travel/stress so soon after all these surgeries, but regardless I want to give it a break for a little while. Tomorrow I am seeing my local GYN for my first follow up since surgery.
On top of all the travel in the past 2 weeks I also took a class in Jin Shin Jyutsu which is a Japanese form of self acupressure that can help with pain relief, stress and general well being. I'm working on putting together a very gentle yoga program with an acupressure component for women going through mastectomy/reconstruction and hoping to teach it at a couple of local FORCE and Bright Pink events come up.
Kathryn - best of luck this week! When you say scar removal what do you mean? I'm still working on my scar, still using the brown tape on the DIEP one which seems to really be working except the dog ears are still a bit ropey. Using kelocote on the mastectomy scars and it's hard to get the tape to stay right there...some days they look great, other days more red...again the edges underneath are still a bit ropey...wondering if that will go away with more time or need another revision...experienced ladies, have any insight?
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Adey- I stayed near there. It's the closest hotel to the hospital and in walking distance, also very close to Walgreens (which is probably the best place to get groceries around there, believe it or not). I wouldn't recommend walking too much around there though, the neighborhood changes from touristy to scary pretty quickly (part of the reason for the car service, I assume). It's right on St. Charles, so if you stick to St. Charles and walk (or take the trolley) toward the quarter I think you'll be fine. Ask the nurses for advice on where to go/not go around there.
P.S. The NOLA tourism office is practically across the street from the hotel. Definitely make a stop there before surgery if you get a chance so your companion (husband?) will have things to do while you're in the hospital.
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Thanks Brenda! Ah ha... dodgy neighborhood... I'm leaning toward trying it still. BTW your pics are awesome! And thanks for the vitamin info.
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re: scars... since I'm still wearing compression I don't want to try scar creams just yet (my favorite cream tends to stain clothing). But my massage therapist is going to give this a try: http://www.chicagomassageworks.org/LymphTapingScarTherapy.html
Does anyone have experience with that method?
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Adey - Dejaboo stayed there and I think she liked it alot. She doesn't post much here anymore but I think she checks in every now and then - so maybe she will let you know or you can try sending her a PM. Also - you will be on St. Charles Ave. as Jeskachi already said - super easy access to the Trolley line. We have walked all over that area - as I had to pick up my packet last year for the Jazz Half (which I am missing this year - it is this coming weekend!) and then just going back and forth to the zoo and stuff. From what I have seen - the area that is behind the Clarion (I don't know N, S, E, W in that vicinity!) can get pretty iffy - as well as the area where the circle is past Zea's (heading back toward the Quarter). The area on the other side of St. Charles - looking across it from the hospital and from the Clarion (as they are both on the same side of the street) is pretty nice. Lots of beautiful older homes and has a good "family" kind of vibe. But we did not walk everywhere over there, so I agree that I would double check with the nurses. As for the exact area that the Clarion is in - I think you will be fine. It is just like any other big city (actually anywhere these days) - be aware of your surroundings and those around you. I think you will have a great time!
Kathryn - I SO wish I was going to see you this week! And Eve! You two have a great time and you both know you will do well in surgery!
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Hi all. I have a couple of updates. First, thanks very much to everyone who shared their Stage 2 experiences. That helped me make the decision to wait until next year. I talked to Vickie this morning and my out-of-pocket cost will be the same next year so that sealed the deal. This process has been very hard on my family, especially my kids, and I didn't want to have a Christmas season of me being out of commission and not able to do the mom job. They have missed having a fully functional mom who runs the house and it has made our whole family structure feel unstable. Whine, whine. So Springtime, when you have a minute, please delete my Dec. 9th Stage 2 date.
The other update is that after I took out my drain last Thursday, I started having drainage from the middle of my hip incision, which then got infected. I started on different antibiotics on Sat night and my MD says that this morning it looks much better. I guess if there is still drainage it is better for it to come out than stay in, but I wasn't expecting this additional little wrinkle. Sorry to be so whiny today, but there it is. I am still walking at least three miles every day and having steadily less crampiness and soreness in my legs and breasts.
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Hey all you pros out there....question about exercising, I am almost 3 weeks out so no hard exercise for awhile yet but I can see in a few weeks that I will be able to do zumba, resistance training, and swimming. But yoga? I am questioning if these abs will ever be able to do a backbend again. I can just now stand upright. Leaning back hurts and feels like I will split that incision wide open. Hard to believe I will ever have the same flexibility there. What do you think? Will I? Do you?
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Running, I deleted your date.
KBodie, I did yoga but started at home with gentle, and then did gentle for a while when I want back to class. My instructor was nice and allowed me to switch to gentle until I was ready, then I moved up again. It helps stretch stuff out. Go easy at first!
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it took me about 5 weeks after DIEP to do even the most gentle ab stretches...no backbends for a while but started with bridge pose which is amazing for loosening the area up...if you have an issue do support bridge with a block under your tailbone and hang out there for a while. Also if you have an excerise ball best to try to drape over that for a while before trying a backbend...feet against the wall at first to get you some support. If you have a high bed I got a lot out of laying on it with one leg dangling off and the other pulled into my chest, pelvis untucked as much as you can but tuck if that hurts. Baby steps! I'm actually starting up yoga classes again this week, been doing some stuff at home and was probably ready 2 weeks ago but doing too much traveling. Hardest one for me is still updog and chatarungas, downdog surprising going well. Standing poses were my go-top after surgery so maybe try some of those. I'm working on developing a class I can teach to post mastectomy patients so I'll let you know what I come up with - good luck!
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forgot to mention - baby cobra if your friend too!
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Had my post-op appointment with Dr. S today. He took the nipple guards off and the areola grafts and nipple look great! They're back under the brown rounded guards now which definitely looks better under cloths! Since I live in Maryland, I don't think that I'll be traveling to NOLA for my tattoos and I think overall everything looks good so I was sad to say good-bye to everyone. I've never felt so well cared for. I will miss all of the exceptional women who work at the Center. And yes, Katie is extremely excited and has a beaming smile!
Running - Sorry that you're having some bumps in your recovery but glad the new antibiotic seems to getting things under control. I know what you mean about being able to do the "mom job!" It's good that you were able to postpone Stage 2 without any financial penalty.
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TooMuch, go to Vinnie for your tattoos! http://vinniemyers.com/home.html0
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I am post BMX with TE's (9/26/11). I started a different thread to get advice on reconstruction as my PS said I am not a candidate for DIEP (was originally scheduled for this w/ my surgery) because my perforator vessels are not adequate (had CAT angiogram prior to surgery). The responses I received on my thread advised me to consult with the group in NOLA henceforth my visiting this thread. I have a few questions so any response would be helpful. How did insurance pay? I know my I would ultimately need to contact my company but curious about others out of pocket expenses. How long do you have to stay in NOLA after being released from the hospital? Who manages your care if there are complications once you return home since your treating doctor is in another state? Just things that I have been thinking about since NOLA was recommended. Don't know if they can help since my pre-op testing was not in favor of the DIEP but just thought I would ask those of you that have been there your thoughts before I contact them! Thanks in advance for any help and/or advice.
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momx5plus1:
How did insurance pay?You should submit paperwork to NOLA and let them work it out with your insurance company... I had a special plan I didn't even know I had... they are great at this and will get you better coverage.
. How long do you have to stay in NOLA after being released from the hospital?You need to be in NOLA for your post op which is about a week post op.. so if you are in the hospital 4-5 nights, then you need to stay at a hotel or the HOPE LODGE for a couple of nights.
Who manages your care if there are complications once you return home since your treating doctor is in another state?The Center is great at follow up by phone and with pictures. I had a complication and we were cooresponding daily and they decided to fly me back down to take care of me (on their dime).
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@betsy -- thought you were going to say that about baths and swimming! I am hoping that Friday the drain comes out so I can heal ... may be in St. Kitts for Thanksgiving and would love to jump into the briny sea, to say nothing of hot tubs and a soak now and then! Soon come ...
@momx5plus1 -- Betsy tells it true. I SHOULD have gone to NOLA for mastectomy with immediate reconstruction, but was too afraid insurance wouldn't cover private hospital. WRONG!! Vicki is THE best. You will know ahead of time what your costs will be. And the special rates the Center gets at hotels in NOLA make it affordable. Don't even thing twice ... go for it!! I spent too much time at unhelpful cancer centers (some VERY prestigious!) so when I got to NOLA, it was a breath of fresh air and the BEST care I have ever had. You go girl!!
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http://members.boardhost.com/plastic/
momx5plus1 --- When I researched microvascular reconstruction I didn't come across any reports in the literature describing someone who couldn't have a DIEP beause their vessels were just naturally inadequate unless they had had some procedure that disrupted the DIEP vessels (just my personal research.) Even if that were the case the docs at NOLA can use alternate donor sites (hip/GAP flaps) among others. (I had a hip flap.) A possible option so you can get more information - Dr. DellaCroce from NOLA has an "ask the doctor" web site where you can submit questions (see above link). You could tell him that you were told, that based on a CAT angiogram, that your DIEP vessels were inadequate and ask him how he feels you should proceed. Another thing about NOLA, your spouse or whoever accompanies you to NOLA to help you can stay in a pull down Murphy bed in your hospital room the whole time you are in the hospital so you don't need to pay for a hotel room for that person while you there. ( I thought it was nice to have my husband around for support- though it certainly isn't necessary in terms of care. The nursing care was beyond wonderful.)
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Momx5, - NOLA is the best in the world. Many of us were told different things that turned out not to be an issue in NOLA. I was told b/c I would need radiation it was too complicated. I was told because I had a previous breast reduction I would not have a good result. I was told I didn't have enough fat for even 2 A cups. With the NOLA docs, none of these things were issues and I have 2 C cups!!
my perforator vessels are not adequate - I would not necessarily believe this and if I was you I would get evaluated in NOLA and then you will find out the real story.
Insurance is always different and will depend on what you have. I was in network and didn't pay anything for any surgery. Betsy and Celtic are right, they are fantastic at dealing with your insurance company and will tell you before hand how much you will be responsible for. Then you can decide.
Good luck! Glad you found us!
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