TE TROUBLE
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good news... they will pay! Thank God! But they gave me hard time, no doubt...
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olga34,
If they give you anymore trouble, here is the link to the Women's Health and Cancer Rights Act. With few exceptions it requires insurers to pay for reconstruction to not only the cancerous breast, but a non affected one to achieve symmetry. It has some good links to the law itself.
http://community.breastcancer.org/blog/reconstruction-coverage-under-the-womens-health-and-cancer-rights-act/0 -
crystal - I think it was the short term disability to replace her income that was not paying out for Olgah, not her health insurance, but it is always good to know the details of the law. It seems that some have had problems with insurance coverage paying for some parts of recon, even though they have to by law - thank for that link!
olgah - thank goodness!
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Right, thank you ladies! By the way, Michelle, I did not have time to do vaciine, dealing 3 months with seroma... time is gone now, but I don't worry much about it. It meant to be this way, I guess..
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olgah - we often have to adopt that mantra - especially in light of recon challenges, and you have certainly had your share! Maybe it was a sign that you would have been sorted into the placebo arm and not had enough benefit for the effort - not meant to be.
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Olgah, so happy to hear you are on the healing side and your disability is straightened out! What a relief. I added your next surgery to the list above and I'm looking forward to you being in the "completed" section! ;-)
Psalms, how are you hanging in? Let us know!
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Another fill today. 60cc's on both sides. Boy I feel like I have two concrete mounds on my chest. Three more fills. It looks like my exchange will be the first or second week in June. I can't wait. Please tell me this tightness will go away after the exchange.
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what is squishies
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sheri47 - implants are referred to as squishees/squishies!
kathymc - yes, many of feel almost instant relief at the time of exchange - I was literally more comfortable in the recovery room.
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SpecialK, really, that soon? Looking forward to that!
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Hi. I am a month out from BMX with two post fills and two more planned. Q for you. When I do the change out surgery which I was told would be out patient, how long will I be out of work?
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Hi Not-Me, I think it varies wildly from surgeon to surgeon and patient to patient. It depends on how much "pocket work" you have and what kind of job you have as well. My PS is not at all conservative and my job requires no lifting, so we expect me to be out just a couple days...as long as there are no unforeseen complications, of course! Good luck!
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2ndtime - yes, that soon! Even with normal post-surgical pain I felt so much more comfortable.
not-me - my PS is very conservative but it was less than 2 weeks.
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I made an appt with PT, because I still have pain and cannot raise left arm, Latis is not easy...
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olgah - excellent idea - even though I had received some PT throughout the time I had TE the nurse practitioner at my PAP appointment (who had a BMX as well) recommended and wrote the prescription for more PT after exchange. She felt that range-of-motion in the shoulder is indeed lost anytime you do this kind of surgery - I think this is particularly true for you with lat flap surgery.
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Met with my PS today for "the talk" in prep for exchange surgery in 2 weeks. Finally, getting really excited! I give her final decisions next week. I like what she had to say, but have some questions about which implants she recommends. (Whippetmom, will PM you with some specifics) My case is a bit different than most as my left side is delayed-recon so she may have to remove more tissue on the right side for symmetry. Again, as pretty standard, she'll take my preferences and various sizes into surgery and make some decisions based upon what she sees and my desires. Use of drains will have to wait until what she sees in surgery, but she says she usually doesn't need them. (Yay for that.) She doesn't want me wearing UR's for 3-4 months, will make incision near mx incision, and loves the idea of Genie bra and the bra I got post-mx from the specialty shop to try to even my boobs out for me to wear at night.
Special K - hoping the same is true for me!
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Holy moly...two days to two weeks for the change out and off of work. I had no idea. I figured I would be back the next day. I have a desk job and am just trying to plan out my life and "when" this should happen. Thanks!
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2ndtime - I hope so too!
not-me - you will be having a general anesthetic, I don't think it is ever a good idea to return to work the next day. Not to mention, you will have fairly large incisions and may be a little uncomfortable.
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Not Me-I am a realtor, so have a flexible job, but I didn't do much for a week or so. I didn't want to take any chances of anything being screwed up or another infection setting in.
To all the oldies and the newbies on this thread...
I just looked at the list at the top and wow! Look how many have made it to the end. If you are new with issues, look at that list and know that everyone of us was where many of you are now, and we toughed it out and made it through!
I need to have my nipples touched up for my last thing. My PS can do it, but he is the first to say that he is not a nipple artist. I really want to go to Vinnie Meyers, but am having a hard time justifying a 9 hour drive and $400 just for that.
I really haven't found anyone around here that has 3d experience.
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fluff - I will meet you for a Vinnie appointment! I have uneven nips (had nip sparing) due to the TE being out of the left for so long. I want to do an areola tattoo to even them. I thought I might try to see him in Baltimore when I go for a vaccine appointment. Were you thinking of going to Baltimore or NOLA?
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SpecialK~not sure about the general. But I am a baby when it comes to pain, so probably.
Fluff and SpecialK~I am nervous about the nipples and tatoos...having read a very bad online review of my PS office and the tatoos. I am willing to drive and pay the money, who is the best for this? I do not want to go thru this more than once.
My PS seems to be the best in the state for recon, but the online review of his office staff and tatoos, scare the hell out of me.
I live in both central NY and MI, so am flexible. Thanks.
Also, received another 50 cc fill today, am huge. End result will be a B a full size up.0 -
not-me - I am not a good resource for this as I had nipple sparing BMX. I want a tattoo to even just the areola. The source referred to above is Vinnie Myers - well known for this kind of work - he works at his own studio in Baltimore, and also goes to the Center for Restorative Breast Surgery in New Orleans part-time. This center is a national leader in autologous breast reconstruction. I linked an online site for him below. When I asked my plastic surgeon (he does not do any tattooing) he said he refers his patients who need this to the cancer center (which is NCI designated) to get it done. You might call the NCI centers in your state and ask for their resources.
http://vinniemyers.com/section/105672_Nipple_Areola_Tattooing.html
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great advice as always SpecialK!! I'm not ready for nips, but when I am, Vinnie's gonna be my man!
Fluff: I agree, I was looking at the list the other day. There were SO many of us at the time I started this thread, and it really is an amazing feat to read/see that we all made it through TE Trouble Hell! I do hope it helps any others out there dealing with failed or infected tissue expanders.
Psalms, please check in.
DM13: How do you feel 2 months post-exchange? The newbies want to know!
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Hey all! I had my final fill on Friday. PS said he doesn't recommend stretching the skin out any further. I wound up with 410cc and he said he can get a 450-500cc implant in with what I have. Swap surgery sometime in June
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ren - you, me and fluff should do a trio appt with Vinnie! The list in the topic header is, and should be, inspirational to all!
road - yay!
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Renn,
I remember like it was yesterday when you started this topic. It was so timely for me because I had finished chemotherapy in the latter half of June and, at the time of your original post, was going through the pre-op work to have an exchange from one failed set of expanders to another, a surgery that took place August 11, 2011.
A long time ago but then again, not. As can be seen in the list, I had that second set of expanders exchanged for permanent implants three months later with no further medical issues.
Thanks for starting the journal of progress for us!
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okay so just had a fill yesterday. The pain is ungodly. I feel like I am having a charlie horse every 2 to 3 minutes. I have taking Valium and it has not helped. I have a call into the Dr now to see what else I can get. Any suggestions?
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Kathy sorry you are having such pain from the TE. Is this your first fill? My 1st and 2nd fill were pretty painful but as my TE got fuller, the less they hurt after a fill. What cc fill did they give you? I played around with the amounts until I found 60 cc weekly fills were manageable for me.
The Valium seemed to help me after fills if I took them before bed or before my fill apt (the valium did not make me too sleepy to drive but everyone is different).
I also did ice packs (wrapped in a towel and placed on clothes and not directly on the skin). That helped me a lot during the more painful fills.
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Thanks Jen. I think this is my seventh fill. I started off with 30cc and this is the third fill with 60cc. I'm at 420cc. Trying to get to 500. I spoke with the dr and she gave me Percocet. Seems to feel better. Still a little pain but manageable. I have two more fills than the exchange. It can't happen fast enough. Overall its not been bad. Just the last two times.
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Roadwarrior: When you have an exact exchange date, please PM me and I'll add it to the list!
SpecialK: A group visit to Vinnie! Now that would be fun! Tho b/c I am lopsided, I would need a lift to lefty first before I could have nips. And hat won't be happening any time soon!
Monday's Child: Yes, so much water under the TE bridge! I knew I couldn't be the only one going through such issues with my expanders. Little did I know how common all this actually was! So glad we all found each other here and that we have left a path for others to follow who may need advice, encouragement, or just a place to vent.
To anyone struggling through reconstruction, there *is* light out there! It may not be shinging as brightly as you hoped or expected, but it's there. There is life after TE Trouble.
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