Oct 20, 2011 11:48AM CoolBreeze wrote:
I'm so sorry, that must have been awful. And, on vacation too!
You can get a prosthesis. Your insurance should pay for it.
Posted on: Oct 20, 2011 11:43AM, edited Oct 20, 2011 11:44AM by sundermom
OK ladies I am in desperate need of your words of wisdom. Here 's the scoop:
BMX with TE placement Dec 2010
Exchange May 2011
Revison to release capsular contracture Sept. 2011
Incision pops open exposing implant October 20, 2011 while on vacation
I went to the local ER and they stapled me shut again - less than comestically appealing, but it did the trick. However after talking with my PS via phone he says that implant HAS to come out as soon as I get back home, and . . . Here's the kicker for me . . . It has to stay out for 6 months before we try again. I am devastated! How in the world will I deal with one size 36C and one size 36AA ( or less) in clothing? Please help ladies.
Posts 1 - 18 (18 total)
Oct 20, 2011 11:48AM CoolBreeze wrote:
I'm so sorry, that must have been awful. And, on vacation too!
You can get a prosthesis. Your insurance should pay for it.
Oct 20, 2011 11:57AM sundermom wrote:
Thx for the quick response Ann. Do you know the process for that? It seems my gma had to be measured by a special fitter. I'm thinking of the short term . Like what do I possibly wear to work on Monday???
Oct 20, 2011 11:59AM Tatina123 wrote:
I feel so bad for you......I am so sorry. Like mentioned before, a prosthetic will be a good choice. By chance, did your PS happen to order you any antibiotics to start taking now?
Oct 24, 2011 10:10AM sundermom wrote:
I am home and recovering from the surgery to have the exposed implant removed. I have a drain again which really sucks and I look horrendous. It's ten times worse than after my BMX. The PS had to remove some dead tissue too so I'm pretty sure another implant will not be an option. I have an appointment with him tomorrow for us to discuss our remaining reconstruction options. I also plan to ask for a prescription for a prosthesis and already have on appointment on Wednesday to get fitted for one. I just can't walk around lopsided for the next 6 months while we wait for me to heal enough for me to have the next procedure.
I had my PET scan this morning and will get those results on Wednesday. After all of the sh** I've been though it better be NED!!!
Oct 24, 2011 10:22AM SpecialK wrote:
sundermom - sorry about your situation. I had to have a TE removed about 2 1/2 months after BMX and it was out for almost 8 months, so I know what your state of mind is. I did finally get a prosthetic and it was comfortable. I also recommend using a mastectomy bra - trying to put the prosthetic into my regular or sports bra sometimes resulted in a wardrobe malfunction! I also found that ruffled tops and those long looping scarves were my friends. Going into colder months will be good also - sweaters and layers make it easier to conceal the difference. I am not sure that the dead tissue automatically means no new implant. I had lots of necrotic skin that had to be removed and still was able to have a new TE and looking forward to exchange probably after the new year. There is a thread TE trouble - the ladies on that thread have all sorts of combinations of TE's, implants, etc - check it out. We are all in the same boat with you!
Oct 24, 2011 10:53AM , edited Oct 24, 2011 10:54AM by CoolBreeze
For those looking for a quick solution - there are fake boobs that feel a lot like prosthesis at "As Seen on TV" stores and at Amazon:
They are thick like a prosthsis, and they are silicone so feel soft. I used one during my reconstruction process to even me out and it stayed in place. They are not a permanent solution but are available to those who need something quick.
Oct 24, 2011 11:23AM janey47 wrote:
I'm so sorry, sundermom. That happened to me, too, about 6 weeks after my silicone implants were placed. It's scary and creepy and I wouldn't wish it on anyone.
My ps told me I had the option to wait until it was fully healed and then try again or to swap out the implant at the time of surgery. He said the first option would guarantee two surgeries but that if I chose the second option and it too migrated out then I would have to have it removed and start the waiting period then. I chose to go with the latter because I decided to be optimistic, and it did fully heal up just fine. Of course, then I had to have the whole thing redone because he had erroneously placed the implants under the muscle, which was not the plan or goal (they are now sub glandular).
But yeah, the incision opening up and the implant creeping out is a really bad experience and yeah I was so fricking mad about having drains drains drains all the time. I was like, celebrities get implants all the time and don't have to go through this crap, is it my fault for not going down to Beverly Hills to have it done?
Sending you lots of positive energy.
Oct 24, 2011 04:38PM Tatina123 wrote:
I know how you're feeling.....I really do. Two weeks ago today I was admitted to the hospital with a TE infection and on IV antibiotics for 5 days. I ended up in surgery to remove the TE that same week. It was just awful.
I had two drains, and my last drain was removed last Friday. It gets better. SpecialK is right, scarves are great (J. Jill has infinity scarves on sale now that you can wrap around 2 or 3 times), and now with it being fall/winter, I bought a couple cardigans with ruffles which are great.
Hugs to you,
Oct 24, 2011 05:39PM SandyinSoCal wrote:sundermom, I'm so sorry that you've gone through so much. I'd like to recommend that you consider flap reconstruction. Not with just anyone, but with the world's best, mainly because you'll greatly increase the odds of success and a great outcome. Optimizing your result is trickier now that you've had previous reconstruction, and you'll want a surgeon capable of dealing with your special circumstances. I highly recommend that you contact the Center for Restorative Breast Surgery in New Orleans. You can email Liz (she's the new patient educator) and she'll probably have you send photos so you can discuss the types of recon that would work best for your particular body. There's no obligation, but you owe it to yourself to get the opinions of Drs. DellaCroce and Sullivan. They spend half their time fixing up failed and botched reconstructions, and I went to them for that reason. Dr. D worked miracles for me and I know my outcome would not be nearly as good as it is if I'd gone elsewhere for help after my complications. Liz's email is email@example.com and she is wonderful about helping with any and all questions you might have--she works long into the evenings on the phone helping women like you and me. Implants after rads have a very high rate of failure, and tissue flaps are a much better option.
Oct 24, 2011 05:46PM jblcsw10 wrote:
Hi Sundermom, jumping over here from the TE Trouble group too...just wore one of those fun scarves today and it looked great! Hooray for cooler weather. How awful to go through all this after successfully getting implants. I had my BMX w/TE June 2010, lots of problems with skin necrosis/healing but was finally almost filled when my rt side failed, skin just starting opening up (sounds alot like your implant). This was just about 2 months ago, over a year since my surgery. I thought I was at the end of the journey...now it is like starting all over again. I felt the same way - I had a very difficult time looking at my empty chest and thought it looked mutilated. Yet it really does get better, and even looks better as it heals. Mine was pretty scarred from the necrosis on top of that. Anyways, I went to a mastectomy supply store the next week after having the TE removed and got the prosthesis and 2 mastectomy bras. They work fine, in fact I need to go buy a couple more bras since I am wearing them more. I also have gone out wearing a shelf bra type camisole, stuffing a soft sock in it! Hey, it works. The other day I went out and forgot to put something in the shelf bra and was in the grocery store when I realized I had forgotten. I guess thats progress...I also got an inexpensive soft microbead form through TLC (American Cancer societys' store) that was about $45 I think. I have some soft stretchy trainer type bras I was wearing before things went "bad" and can just put that form in there - not as nice as the offical silicone one but very soft and comfortable. I got a lot of ideas on the section on BCO messaging for people who have chosen not to go the reconstruction route (I can't remember the exact title but lots of good info in there).
Again, so sorry you are going through this but you're in good company.
Oct 26, 2011 01:03PM sundermom wrote:
This has just been a complete nightmare! I couldn't get fitted for the prosthesis today because I still have a pesky drain in that isn't coming out until Monday. My PS was completely noncommittal about a plan. He said it all depends on how I heal. He mentioned something about using muscle from my back, but I've been having trouble with that shoulder since my BMX and the thought of him taking muscle from there and me having a giant incision on back is less than appealing. I've been reading about DIEP. I've had 5 kids so I definitely have some tummy tissue to spare :)
SandyinParadise- I emailed Liz. I am eager to get a response. At this point I would say I have a lack of confidence in my PS and would prefer to work with someone more experienced with troubled cases like mine. How many trips do you have to make to New Orleans? How long do you have to stay? Travel costs could be an issue for my family, so I don't want to get my hopes up if it's completely unreasonable.
Oct 26, 2011 06:02PM Tatina123 wrote:
I hope you start getting the answers you deserve soon! I'm sorry the prosthetic fitting didn't work out like you had hoped. How frustrating.....
My TE came out a couple of weeks ago and my last drain out last Friday. I was told that I could not wear a "heavy prosthetic" on the right side yet, but in the meantime, I could wear a foam breast mold. I'm still in a post surgical bra at this point and found a soft foam insert that works well -- thank goodness for scarf season.
The plan is that my TE will go back in 2-1/2 months. If it becomes longer than that, I will invest in a "silicone or saline prosthetic." But at this point, I'll just wing it.
Again, I am so sorry for what you are going through. We need to take it one day at a time.....it will work out.
Oct 26, 2011 10:24PM RN_mama_of_2 wrote:
Sundermom, I couldn't believe that I just came across your post...been on here a little but never really posted...anyway, I am going through nearly the exact same thing and I totally feel your pain. I had BMX in Nov. 2009, had the right TE fail due to radiation burns/infection. I waited several months to heal and had a latissimus flap in Feb. this year. Went through expansion process (again) this summer and had my changeout in July. I was so excited to be at the finish line! But 4 weeks after my changeout I had a small tear on the inner part of the radiated breast (not the flap). PS repaired it and thought we were in the clear but about 10 days ago it started to rip open again, completely exposing the silicone implant. Due to the risk of infection it was removed on October 18. I, too must wait another 6 months before he'll try again...this time with a flap from my upper abdomen. I just got my drain out and am back to my prosthesis. Because I'm a small build, I'm not a candidate for DIEP or anything like it. It's awfully difficult to look at myself this way again but I'm not giving up. I certainly hope you are healing and that you are able to get fitted properly fitted for your prosthesis. Sounds like we need to be extra kind to ourselves during this delicate time and have faith that this will all work out. This journey sure has me learning some patience. Hugs to you!
Oct 26, 2011 10:47PM Nordy wrote:Sundermom - I just saw your post... read through all the other posts and realized that Sandy has already been here! I have to second her about contacting the Center. I had TE in for 18 months (long story about a pregnancy and then a move - which is why they were in so long) - I had to have them removed when the one on my BC side (aka: radiation side!) decided that it would like to come out on its own! I was so devastated. At that point I had opted to just live my life flat - but the TE had caused my rib cage to push in, so not only was I flat on the left, but concave on the right. I was so miserable! I finally decided to look into having reconstruction with my own tissue - but absolutely did not want to use muscle (ie. TRAM or Lat flaps) - which is all the doctors locally had to offer. I started searching - and RN_mama - I am also on the smaller side. I searched coast to coast and north to south for a doctor that could do my reconstruction. I was told by most that I would "maybe get an A cup" with DIEP, and another doctor said that I didn't even have enough fat on my belly for that! I was so distraught! But at one of my consults at a major teaching hospital on the east coast, the PS said to me, "If my mom was going to have reconstruction using her own tissue, the only other place I would send her if I wasn't doing her surgery, would be to Drs. Dellacroce and Sullivan." I had known about the Center before my expander placement, but thought that travel would be too much... this time, obviously, that stuck and I went to New Orleans in Aug of 2009 to have bilateral hip flap reconstruction with Dr. Scott Sullivan. I have never looked back. It was honestly the best thing I have ever done for myself. My pictures are up on TimTam's website if you want to see them. And you know, I just have to say that my local PS has been so impressed with their work that she now refers patients to the Center when they are looking for flap reconstruction. Soooo... like Sandy, I encourage you to make contact with them. Many of us that are their "cheerleaders" are this way because we had failed or botched reconstruction elsewhere, that they were able to fix with their expertise and compassion. Good luck to you and I am sending huge hugs your way for all that you have been going through! Sheesh!
Oct 26, 2011 11:01PM Nordy wrote:
Oh, also I can help answer your questions regarding travel.
How many trips do you have to make to New Orleans? I made 3 - one for my stage 1 (this is where they take up the flaps and actually, they do quite a bit of shaping during stage 1 as well) and a second time for stage 2 - this is where they do scar revisions, even things up if necessary and if you want - build a nipple for you. Then there is tattooing - which I had done in New Orleans - but you could totally have that done elsewhere - but I love it there now, so it was worked into a trip I had already planned!
How long do you have to stay? Stage 1 is usually a 10 day stay. You fly in one day, have your pre-op appt and testing the next day, surgery the day after that. You are in the hospital for about 4 nights, then have to stay in the area until your post-op which is 1 week after your surgery. This was the worst part for me because I had a one year old and 3 year old at home... and I had never left them before!!! But they had fun playing at their cousins' house and it did go by fast!
Travel costs could be an issue for my family, so I don't want to get my hopes up if it's completely unreasonable. If travel is an issue... there are things you can do to ease this burden. First there is Mercy flights - I did not use them, but I know people who did. They will fly you and a caretaker one time a year for travel for medical procedures. Katie at the Center can help facilitate this if needed. Then there is the Hope Lodge in New Orleans. This is run by the American Cancer Society and is free of charge for patients having surgery at the Center. I stayed there before and after my stage 1. I chose to stay near the French Quarter for my stage 2 because I wanted to be able to be a tourist that time! But staying at the Hope Lodge really helped ease the travel part of everything. In addition to that - many of the area hotels have discounted rates for patients of the Center. Katie can also help you with questions about lodging and she is the person that arranges your stay at the Hope Lodge as well.
If you have anymore questions - please feel free to ask!
Oct 27, 2011 11:32AM sundermom wrote:
Thank you for all of the responses. This board has been such a great source of support for me.
I just got off the phone with my PS and I'm going in this afternoon so that he can remove the drain. It has never yielded more than 10ml of fluid in 24 hours and I just don't see why I should have to live with it until Monday. Nothing about my case is typical, so why should the time the drain stays in be any different??? Since I'll be drain free I made another appointment to get fit for the prothesis tomorrow. I have been wearing a normal bra with a pillow type insert, which has actually been much more comfortable than the implant :) I feel like I'm starting to get my fighting spirit back...finally!!!
No one from NOLA has responded to my email. It's been 2 days. It this pretty typical. Patience is not one of my best personal qualities. LOL
Oct 27, 2011 12:04PM whippetmom wrote:
sundermom: Send a private message to SandyinParadise and see if she can help you with the responsive issues at NOLA. I agree that you must find another plastic surgeon and the DIEP and going to NOLA for the DIEP would top my list of recommendations.