NOLA in September?
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Answering a scrapbook question: when you send me your page(s) sandwich them between 2 light cardboard pieces. I think that wil provide the extra stability needed.
also, I haven't heard from DejaBoo,KCShreve, Jamie, Brenda, HellofromCt, Holtbolt,Gin52 are you sending me something for the scrapbook? I sure hope so!!!
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Yea! I get to post! I have been following this thread for awhile now, but due to account problems have been unable to post. One of the moderators finally got things fixed for me so I can post!
I am 50 and just found out that I carry the BRCA2 mutation. I have not been diagnosed with cancer, but it did take 1 mammogram, 2 untrasounds, 2 MRIs and a biopsy to determine that. So, I really didn't like all those tests very much and now on my way to a BPM. Long story short, meet with PS and BS close to home, but they are not able to do what I want. So, I am on the schedule with Dr D in NOLA Aug 3rd for a nipple sparing DIEP.
This thread has been great! and helped me to decide to go where the work in done often and with results women are happy with. I am paying some out of pocket, but think it will be money well spent.
Looking forward to continue to learn from all of you anf hear about your experiences.
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Tammy, sorry but I want to wait until after my stage 2 surgery. I think it's a great idea and very nice of you to coordinate and put it together. There should be lots of women who are finished who want to contribute!
Welcome ladybug! I had my NS PBM on February 23 and will be having stage 2 on May 20. You've made a great choice in Dr. D. Best of luck with your procedures. August will be here before you know it!
Suzanne
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Tammy mine will not be ready when you go. I think if I put the pictures that I want in the book now that they will have patients leaving before seeing Dr. S or Dr. D. Can I send you $ to help with the cost of the book and then later forward my page ???
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I have an idea for the front (Title) page of the book.......Thank you Dr. DellaCroce and Dr. Sullivan, you are the real Saints of New Orleans and we love you! What do you think??????
Just want to add for those of you who have already had your surgery but not sure about when you want to do a page...remember this is a book to THANK them, it doesn't have to have all of your before and after pictures. As long as there is a picture of you so they can recall faces and names i think that is sufficient. I am GOING for my stage 2 when I give the book in 2 weeks, so I won't have any after pictures either.it's all about showing our appreciation to our DREAM TEAM!
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Tammy - I sent my page last week - did you receive it, and did it survive the mail??
I love the phrase "you are the real saints of New Orleans" - so, so true!! Thank you for your efforts in putting the book together on behalf of all of us!!Jamie - My nipples look the same as yours, only I don't have the red spot. I think you look fantastic!!
Ladybug - Welcome!! Great choice in going to NOLA!!!
Sandy B - Congrat's on a successful surgery!! You will feel better and better each day!!
Sally - If you go to the BC.org home page, and put 'timtam' in the search box it will pull up timtams profile - you will need to send her a pm and request access to her site - let her know that you are a BC survivor, and that you have had surgery. It may take a few days, but she will reply back to you with the site address and instructions on how to access it. Because the site is pretty private, I don't think you can access it without getting clearance from timtam (Fumi) first. She is located in Japan, so be patient, she will get back to you. Just a heads up - some of the photo's are very sad - I usually shed a few tears when I go to her site, as I am always in shock at some of the results women get.....and then are told by their PS that it is the best they can do.
I feel blessed that I was able to find Dr. S in NOLA and get the amazing results I did!! 0 -
Plication was done internally but I do have a very low incision that is right over top of my bikini line. The incision doesn't bother me too much it was the stomach muscle stitching is what hurts the most. It is getting better dailey so I imagine that within the next 2 weeks it will not hurt and I can start exercising.
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Margit~I'm so sorry you have had a rough go of it. I am glad that you are better now, but it is still no good that you had to feel that way.
Regarding the scrapbook. MOST of the ladies who did the FORCE scrapbook that is the Center now don't have any before and after pictures. So don't think you have to wait or to even include them in your page.
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Jamie... I think you look terrific.. even if the issues you mentioned never get resolved...
TrainerTam .... thank you for putting the book together.... I don't think mine will be ready by the time I leave but I would be more than happy to send you $ and add mine later? I love your title!
LadyBug - Welcome! Dr. D is awesome!
Jinger - stop doing your own snipping! lol That gave me the willies just reading about it... Note to Self: No Self Snipping!
Sandy B - I get migraines too.. they are terrible.. but if that's the only problem you are reporting.... then woohoo! Glad everything went well...
Pre-surgery bloodwork tomorrow.. can't believe I'm leaving a week from Wednesday!
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HI All,
I have some questions. If you go with DIEP, do they take off your belly button? Is plication done then or in stage 2?
What are the side effects of SGAP?
I am still waiting for someone from NOLA to call me and schedule Stage 1 and I am not sure if I should do DIEP or SGAP.
KC, Sorry you are so discouraged...Is cellulitus an infection.
Lynn
Diagnosis: 8/10/2009, 1cm, Grade 1, 0/0 nodes0 -
Spring Put me in for Stage 2 on August 20th. It is going to be hotter than heck down there.And right now I am scheduled for vacation that week so I think I may just go a few days early to see the city. Seems like all I have seen is the inside of St Charles and the Hope Lodge the 2 times I have been, I am going to try to get ahold of the HMO dr tommorrow to remove the stitches and Jeanine wants an ultrasound to make sure I dont have fluid because I am in so much pain behind the belly button. Minnesota I am sad I wont be there when you are but there is always October.
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SallyM, I put Stage 2 , Aug 20, if you want surgeon, hospital etc, let me know what that info is. I can't remember if the stage 1 is no longer listed up above! :O
Margit and Sandy B - thanks for the recounts of your procedures. It will help others!
Lynn, I had DIEP and GAP/lumbar, and yes, your navel is taken and you get a new one. I had it done twice b/c I wanted my incision line lowered significantly in Stage 2. It is sore a bit for a while, but my skin around there was also numb some, so not so bad, really. (I say hti sat 5 months out, it was probably a big deal early on!)
Somebody asked about TimTam's site. You need to contact TimTam, she does not allow us to give out information. In upper right corner, click Member List and search on TimTam, then PM her. She can set you up.
Jinger, OUCH!!!
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Jamie, your pics look great, and don't worry about the nipples. they shrink to a more regular size, and all the black stitching gunk eventually comes off. Time time time time time girl! It just takes time! 0
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((HUGS)) to all of you ladies.... You honestly all made me feel better about my freak out. I think I am having a weee bit of ptsd after surgery after surgery....I think it is getting too me. I normally would just be fine with everything but yesterday was just bad, bad, bad... Today I am feeling much better and I got some B9 results from 2 little lumps that were removed during stage 2.
So now I will concentrate on not sneezing so I do not cry...lol.... and just give myself some time. The lack of sleep, funky dreams and night time pee breaks are getting to me.
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Spring I will be at St Charles with Dr D Thanks for asking.Ladybug I too was diagnosed with BRCA 2 and just had the mastectomy and reconstruction stage 1 in March. So I know what you are going thru. Both my sisters and mother have had BC. But I think some people at work thought I was crazy to have surgery for something that I dont even have. They didn't get the "yet" part. Dr Degrassi did the mastectomy in NOLA and she said my chances of getting BC were around 90 percent. In my area the Plastic surgeon wanted to take my back muscle to make breasts. said I had too many abdomin surgeries to do what I wanted. Welcome and good luck
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Lynn, with my HIP/SGAP, I have large areas across my back hips along and under the incisions that are still numb 6 weeks out. (did anyone else have this, too, and did the feeling return?) My flexibility is returning and I can press my palms to the floor. I am starting back into yoga (after many years) to stretch out everything else. I have been walking since the first week and can manage a few minutes of Wii Fit hoolahooping. ;-> I needed to go with HIP in order to insure enough material for a larger breast size. If a DIEP would have produced the same results, I think I might have preferred that, but do not feel the HIP has diminished my physical abilities in any way.
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Sue, I have always had a numb area along & around the incision line from my 2001 HIP/GAP. It doesn't bother me at all, but yes, it's still numb.
Welcome, Ladybug!
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I haven't been on in a couple of days, just skimmed all since then, but didn't take notes! So I will just be selfish and only ask a question. Do they make you pull the drain at 6 weeks, even if you're still over 20cc?
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Sheridan, Belly Button - they keep your belly button attached to your internal muscles, but they snip around it to "free" it since they do pull down your abdominal skin quite a ways. That leaves a hole from your belly button down by the hairline incision, which they stitch together. Then, they create a hole in order to connect to the existing belly button, which makes a different looking, new belly button. It it stitched into one piece.
Cellulitis - I do not think this is cellulitis. It is an infection of the fluids between the cells, which are much slower moving if one has developed lymphedema. I think mine is a heat rash, since it's not spreading.
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Sue,
I too have large areas of numbness : (
My Lower back is numb 5 full inches above my incision. And in a few areas below the incision. My Hips are numb on the sides & around to my front. It has been 6 months since my stage 1.
I dont think I will get feeling back. It bothers me alot. Im sure I will get used to it. But I dont like huge areas being that numb.
MN- I think they may wait til 7 weeks sometimes on drains....I think they evaluate each person before they decide.
Tammy- I love your title. Im sorry I wont have my page ready. I want current pictures...Not from years ago. And I dont have any. I need to take some.
kcshreve- I hope it is just a heat rash & it goes away soon.
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Greetngs
Thanks for your comments. I posted my experience so people would undersand the difference between an academic medical center and a private practice, like NOLA, for surgical procedures. Penn was no better. When my drains were ready to come out a year ago on a Thursday, they told me the PS's nurse practitioner was off on Friday and I should come in on Monday. Can't another nurse prctiitoner pull the drain, I asked. (The division of plastic surgery has 10 doctors so they must have several NPs). Yes, they said, but the NPs prefer to pull their own drains. In other words, what was important was how the nurse practitioner's liked to practice, not what was comfortable for me the patient.As a result, I had to keep the drain in for another 3 days. When I complained about this, they thought I was totally unreasonable.
Very few private practives will do labor intensive surgeries like the bilateral SGAP. Most medical centers require that their docs accept insurance as payment in full, so reimbursement for the doctors's services is limited. PENN told me they don't do the bilateral SGAP because they didn't get paid enough to tie up two surgeons all day. The academic medical centers that do do bilateral SGAPs do it because they have a committed lead surgeon and they want to teach the PS residents. Ironically, before I started my business helping older adults relocate 15 years ago, I managed the department of surgery at Penn, which included the plastic surgeons.
NOLA's systems and culture place the patient first. They are the exception, not the norm.
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Drain question: My drains were putting out 50cc and above at 8 weeks, the left one came out on its own, and the right one was removed in the 9th week! It was still at 40cc when Dr. D said to go ahead and remove it. They kept me on antibiotics the whole time I had the drains. I've been without them for 2 weeks (heaven) and i go back in 2 weeks to get them again!! How long did most of you have them for stage 2?
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I am also numb. A lot of my back is numb but so far it doesn't bother me too much. I still need to get a new compression garment. The dom outfit is not even close to being really tight now.
Minn. I was told yes that you need to pull it BUT Pam I think had hers in for 9 weeks. I would just call and tell them it is not ready.
Okay so I took the bra off last night and my "ledge" is no where near as noticable as before. So I am thinking that my bra's maybe holding everything up
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Tammy- I too had my last drain for 9+ weeks pulled at 100 ccs.
My Stage 2 Hip drains came out at 1 week. Both were below 20 ccs for 4 days.
I do think I have a small seroma on my hip- that am waiting to hear back on...Should I watch it- or have it Hip*irated?
Anyway- I wasnt Juicy this time!
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Nips & Bras ? ?
So I have not been able to wear my Nip guards for most of my recovery for stage 2. I was told to stop wearing them at 1 week since they were causing healing problems....Then I was told to wear them...then not to...
I trimmed them down to almost nothing & wore them at night only- So I would not squish things ;o
I have not worn them for a week now.
I am one month out.
When did others start to wear a bra with out guards? I am still just wearing loose Tshirts.
I am getting tired of the Frumpy fashion statement.
Did yours continue to shrink much after 1 month? I hope mine are done shrinking!
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Thanks for the info re: the drains!
Tammy - did you have any problems with seroma after they were pulled with that level of output? I guess, at this point, it really doesn't matter - LOL (kind of...) I also absolutely love the title of the album! The only suggestion I might make would be to somehow include the staff, as well. Like maybe: "Thanks to Docs DellaCroce and Sullivan (exactly as you already have it) and staff of CRBS and St. Charles hospital (and then conclude it as you have), you are the real saints of New Orleans......." But just a thought...
Jaimie - Sorry you've been feeling so low. It seems like this is all part of the process. We've all been there, done that. So don't feel bad about it. It just validates the roller coaster feelings of all of us. If there are anythings about our recons we're not 100% happy with, we need to clearly express them to the docs and see if there is anything that can be done to address them. If it is humanly possible, they will do it! We cannot shy away from asking for what we want just because we're in the presence of greatness and might tend to melt, especially after looking at their shoes! These guys are the most sensitive-to-our-needs docs that ever walked the earth!
Pam & Sueinfla - I don't think you should give up on getting feeling back in those numb areas. I can personally attest, for example, that each time I have had the nipple tattoo retouched (at one year intervals), there has been more return of feeling! Even at 2 years out!!!!!!!
Margit - Thanks for sharing your experiences at another med center. Sorry you had that experience - it's especially interesting what you said about their not wanting to tie up 2 surgeons!
Sally - Sorry I'll miss you, too!
Jinger - Ahhhhhhh!!!!!!!!!!!! I've been worried about doing just this sort of thing when I change the dressings on the drain - when I cut the bandage off from around it - trying to see it in the mirror. Or that I'll accidentally cut the tube.
Hi Sheridan! Don't worry about which flap procedure. They'll take a close look and give you their recommendation.
Hotbolt, NMI, Connecticut - Comin' up!!!!
And I agree with Trishia - FEW had before and after in the other scrapbook. Don't stress over the pic's for goodness sake! Folks can look on the website for before and after. Just be yourselves!
bennetts - Yeah! on your positive expeience in Charleston!!!!!!
Ladybug - Congrats! Dr. D. is the best!!!!!!! (Now I have to duck, because Trishia will come looking for me - she wants to box me over this issue...)
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Minn.~ Dr. S's ladies may all get you on your last statement.....lol...
Pam~ I was told 2-3 weeks with the guards on but the times are constantly changing. I am also tired of frumpy clothes trying to hide the Madonna's.
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I refigured that title page to include the others
I had been worried about omiting them, and I specificaly thought about how to include Dr Trahan, so that does it! If any more of you are thinking about doing a page, I would love to get a few more, the book will hold 40 pages!!!
Thanks!!
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I finally got my stitches out today except for 2 that are "stuck" My HMO Dr said he is hoping the body will push them out but if not he will need to go in and take them out "as a foreign body" Jeanine wants an ultrasound because of the pain in the Belly button. Could not do it today because I had eaten (nobody told me I couldnt) so it is scheduled for tommorrow at 10.
I too like the title page suggestions. Sounds great.
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I have numbness along my incision/scar on my hip ever since since stage 1 in December. I am actually still numb along the backside of my arm from when they took out my lymph nodes from my mastectomy last year and I have not had any feeling in my breast area from my mastectomy either. Whenever I have an itch in any of those areas, it doesn't do any good to scratch, because I can't feel it!
Pam...I started wearing my regular bra without the guards after the Center said that I could (I think it was after 4 weeks), and then I was very cautious about it thinking I was going to squish the nipple down to nothing, but it has been fine and I am 9 weeks out.
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