NOLA in September?
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Thanks you guys. You are kind!
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Jane123, I'm so glad that I got to see your bikini pic before you took it down. You are smashing! That should be your Christmas card!
Checking in from Nola, where every day is like a week! What a journey! I had a nice visit with glostagirl while she was out walking the halls. By coincidence, two other women from my small town in Oregon are here so it has been great to have connections with other women traveling this road.
I got my path report from dr. Stolier yesterday. The nodes were clear and nothing invasive was found. Yay! The only worrisome aspect was a 1mm superficial margin. My husband and I talked with him about it and he said that he wouldn't worry, but we were obviously concerned. He came back to see me this morning to see if I would want to do a quick reexcision of just the skin in that area to reduce risk of leaving any dcis. He said that a mammographer here had once showed him an image of a duct with calcifications that extended through the skin so he knows that it is possible. We may do this Monday or wait until stage 2. I was really impressed that he had listened to our concerns and followed through to find a way to decrease any further risk.
There have been rough moments, laughs, tears - the whole range of emotion. The biggest struggle for me has been to find the right timing of food and medication to stay comfortable and not be nauseous. I had lots of tears when my husband left yesterday but my girlfriend flew in and has been so fantastic - supportive, helpful, understanding, with just the right pinch of wth! My sister took the train over and joined us at the homewood suites tonight, and it is so good to have family with me. I started the day thinking that there was no way I could get out for a walk today, then ended the day with a slow stroll outside where we encountered a wedding parade with jazz and umbrellas! I'm excited to get out and move this stiff sore body as much as I can tomorrow. It really changes everything - the hardest thing is getting out the door!
I'm feeling so thankful for the ladies that take time to answer questions and provide guidance to those coming after. Springtime, thanks keeping this thread going. It has been so helpful to me and so many others.
That's my late- night ramble from Nola! Great healing and hope to us all!0 -
LA Star, so nice to hear your report... And thanks for the Thanks!
When I see women hooking up and getting support either in person or virtually here, this is what makes it worthwhile. There is nothing like company on the journey to make it less lonely and to give you more of a feeling of "ok, so and so had this same thing happen to her, so I guess I'm okay" or "this sucks not, but it happend to others and it resolved", or " others left their little kids and all is well", or "so and so's husband couldn't come for all the time, and this is how they worked it out". Anyway!
Dr. Stollier is fabulous, he also did my mastectomy and many others here. I'd go with my gut if I was you. If you feel best having even a shadow of a doubt removed, then do it, whenever is right for you. By the way, My daughter is in a small north eastern Origonain town for her AmeriCorps position (Pendleton!) ending soon. I looked up your town and see you are way across the state, closer to Eugene. How funny that three of you are there at the same time from the same small town!!
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Ladies what a trip. I am not sure if it is me because of the amount of revisions I have had or if it is my insurance company dictating how I should feel but this trip to NOLA was just full of issues. First, I have never ever ever gotten out of the hospital after 1 night, I truely believe you need 2 nights to gain strength to be able to take care of any of your daily living needs. So I did not book a room for my second night after surgery. Laura did not want me to stay a second night so I went to add on a night to my existing reservation who only had a king bed left. Decided to take it and the hotel would not let me stay in king room til my double room was left Said I had to check out at 11 and check back in at 4. I completely lost it , now this is after saying I DO NOT FEEL WELL ENOUGH TO BE DISCHARGED. so after completely loosing it and having a meltdown they decided to keep me at St CHarles. I got discharged the next day and went to the hotel as planned. On Friday I am flying home at 3 going thru Newark NJ and on to Syracuse with limo picking me up at 1 . CHecked out at 11 and asked the clerk if she could print my boarding passes only to find out we are now leaving at 5:38 going thru Washington Dulles to Syracuse, so now I have 6 hours 5 hours to find something to do before limo ( Katie changed that for me) We we finally get to Dulles and our flight to Syracuse has been cancelled. This is at about 10 PM so they had cancelled so many flights out of dulles that they could not even get me on a flight the next day.So we got a hotel and then had to rent a car to drive the remaining 7 hours to Syracuse to get my car and then 2 hours back to my house, Just thinking about the trip raises my anxiety up even though it is over. Yvette at the hospital was in tears because Laura kept saying they needed a medical reason to have me stay another night ie insurance said you only need 1 night. Ladies what can I do to express to the insurance company that this is just NOT right.
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Just a question...what happens if the skin on my breast won't heal? Has anyone had this happen? I don't think it's infected, but looks awful. I have to send more pics tomorrow but I am just curious as I have no idea what to expect or what the process is.
Thanks ladies.
Healing hugs to all.0 -
Jane123 - where is your bikini pic? Your avatar is stil a flower to me. I left you a message to call me.
Chelle - totally normal, the Neo has an extra ingredient to help "numb" that area and it can cause irriatation after awhile, you will be fine. ALso - the bulb is fine, do as everyone said and get a new one.
Jenlee - look at your post op instructions that you were given - this is my nurse self talking.
But in general no lifting or aerobics for 6 weeks. Walking, gentle stretching - feels good. Your body is healing and needs gentle love.Cherrie - I had one of those pedicabs take me back to the Homewood. A little bumpy but a great view.
Nordy - you rock! You and Jane123 and spring need to be the team Boobs in some competition. I will cheer you from the side and organize all your stuff!
I am envying the bikini girls. I was on the little to no lipo plan and still have my curvy bod! No sun for me anyway, protecting my scars and my skin. But got my tanks and dresses with va va va voom cleavage. NOLA rocks!
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chelle... I am not sure how bad it is... but do send them a picture... Mine was awful.. there is a picture on the picture forum.
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Sally.. totally a bummer for you...
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How do you get to the forum to see pics?
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Jeanine sent the pics I sent yesterday to Dr. Trahan and he wants more pics tomorrow.
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PM nowheregirl and ask to see the pics
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Chelle - I have a horrible spot too and it looks horrible but it is healing from the inside out. The spot is dark and there is white stuff around it but it is something - I can't remeber the name that your body makes to heal. I can see it looks like healing from the inside and eventually the dark spot will come off they say. If things don't go good Dr. D said he could pop in a small flap at stage 2 , he wasn't worried and has been seeing my pictures for 5 weeks now, so I am not going to worry. Hopefully it is doing what it is suppose to do. Hard to tell but keep sending pictures.
Geralyn
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Chelle, I've heard several instances here of troubled skin. Sounds like they are watching you closely, so that is great. They can fly you back if it needs attention right away (they pay for everything, ask Betsy), or wait and deal with it in stage 2. Hang in there. I am sure it is disconcerting! Doesn't happen all the time, but I remember a few cases here with other women.
Sally, good grief. What a nightmare. Insurance is a PITA. I am so sorry for what you went through...
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Nordy I lost your cell number can u text me. I know I have been thru a lot this past week but I am still very very weepy and am not sure if I went thru this with prior surgeries. I certainly don't remember it being this bad. I am going to go home tomorrow with my son's help. I have slept most of the last 18 hours since I have actually been at my parents. Is this normal?
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Sally - sorry for your yucky adventures. Leave the yelling at the insurance company for when you are feeling better. Rest, eat well, and feed your soul. Try not to relive your nightmare journey until later. Pulling for you. Peace & strength for the upcoming days....
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Hi all - getting ready to fly home on tuesday before tropical storm debby potentially moves in. should I purchase a pillow or two to fly home with? I can imagine that my hip-flapped self will be mighty uncomfortable without some extra padding. Any suggestions on staying comfortable are appreciated!
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I just read on another thread that Nola will do bilateral SGAP but PRMA will not. Why is it that most surgeons will not do bilateral SGAP? The PRMA surgeons are supposed to be very experienced and well regarded so I am curious about why they won't do bilateral.
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Hello Ladies just checking in. I pray all is well with you ALL. Does Vinnie make monthly visits to the center? If so when. Can anyone share their experience? Is there any downtime or pain?
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Gin! Lovely to see you! Are they going to remove your port under local anesthetic? I just remember a lot of tugging and pulling. Uncomfortable, but no pain.
Tamara - I caught the bikini pic! Way to rock it!
Geralyn and Chelle - fingers crossed for healing skin! Keep sending those pics to the Center. And as Spring has said, if they feel there is an issue, they will take care of you!
Sally. My heart goes out to you. I am sure that alot of the feeling weepy has to do with all of the stress from the past week. I will PM you my cell number as well as text/call you tomorrow. In the meantime, I am sending you a humongous hug. Hang in there. ((((()))))
I have been working on my appeal research for the past week. Now, I just have to formulate my letter. On a down side, it is a pain in the *ss. On the upside, I am learning so much about the role that lymphoscintigraphy plays... And that European countries have done more lymphedema research than the US has...0 -
/>Rogam! It has been a while since we have seen you too! I hear Vinnie is the best! I think he is in NOLA once a month.
Lastar- good news on your pathology! But that is a bummer about your close margin. I am glad that Dr. Stollier listened to you. You will do what is best for you!
Tampa, it is not that PRMA does not do bilateral sgap. It is that they do not do them simultaneously. If you want sgap, I believe they schedule them several weeks apart. Actually, maybe it is 2 months apart, since you need atleast 6 weeks before you can lay on your stomach and you would definitely need to be in that position to harvest your flap. I went to PRMA for a consult prior to my reconstruction at NOLA. If I had had enough fat for bilateral DIEP, I would have gone there. But I did not, and I did not get the overwhelming feeling that they do many sgap surgeries, because when I suggested it, it was kind of downplayed as an option to me. You may want to ask them how many SGAP surgeries they have done, what their success rate is with SGAP and if you can speak to a couple of their sgap patients. The one thing about NOLA is that they do SGAP and hip flap surgery A LOT, have a high success rate, happy patients, and since they work in tandem, it is one surgery for both breasts, cutting down on anesthesia time, hospital stays and you are only recovering once for stage 1. It all made sense to me, and I would do it again in a heart beat.
Okay, got to run. Need to finish this letter. Right now my stack of articles is standing about half an inch high. My husband said they won't even read them. Well, how is that a fair appeal process?! I hope that will not be the case. I'm tired.
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Is there any compelling reason why I shouldn't buy a few pairs of snug spanx instead of wearing a girdle or abdominal binder? I'm sure there must be, but I'm so claustrophobic it's 2:30 AM and i can't fall asleep. I wake up in the night soaked with perspiration, and can't leave the house during daylight hours 'cause I'm a disgusting hot mess with wig/girdle/chemopause hot flashes (I look like an alien without the wig.). Not that I'm looking for or expecting sympathy from the hip and gap flappers, I know y'all have even bigger challenges than us diepsters. Is anyone here on Tamoxifen? More fun starting this week... Guess I'll head over to those forums:(
Just keep telling myself I have nice new boobs and am lucky to be alive!0 -
Tampa, I'll second what Nordy said about why other doctors won't do a bilateral gap flap. I consulted with 2 different micro surgeons at 2 different hospitals, and they both told me they cannot do the bilateral gap flaps because they are the only micro surgeon on their staff certified to do this particular flap. Since there is no one to assist them, they have to do it in separate surgeries one side at a time. Since this is not an attractive option for most patients, the doctors have very little experience. My local ps told me point blank that if I wanted hip flaps, I absolutely had to go to NOLA, and he would be here for local support and drain pulling for me if I needed anything. He said I should steer clear of any doctor who would push for separate hip flap based on their staffing limitations, because it is not in the patient's best interest to go through separate major surgeries when there are other options available. There may be some instances where separate surgeries are the only option left, but that should never be considered the only choice from the start.
Good luck with whatever you choose. This is never easy for any of us, but we can learn a lot from all the bumps in the road people are willing to share.0 -
Jenlee - I had the hip flap NOT a diep and Dr. D and Jeanne told me I could wear a spanx, I didn't need it down my legs.
Diep flap may be different , I am not sure - best to ask them. I wear both, I actually feel good in the dom if I am working or it's cool out etc but if I want to wear shorts or a bathing suit or it's hot outside I wear the spanx - whatever is comfortable. Switching back and forth makes it alot more bearable.0 -
Jenlee- I had the same reaction to the dom... don't know if it was the size or the fabric or maybe just that it went up really high in the back and that made me feel like I couldn't breathe. I put it on once while my Marena was drying and I had a full-fledged panic attack. (Never had one before or since.) I got out of it as fast as I could and never put that thing on again. Marena is like Spanx and very comfortable. It's made for post-surgery so holds its shape a little longer than Spanx, but otherwise they're similar garments. You should be able to make the switch if you want. Clear it with the center, but I doubt they'll have a problem with it.
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Thanks Nordy and Dianne. My question was not well stated; I was asking about simultaneous and not just bilateral in general. So thanks for answering that.
I had a consultation with Dr. DellaCroce a few weeks ago and hip flaps is what he recommeneded for me. I have giving it strong consideration. I have problems with my implants and need to address those concerns. A major worry I have is the aesthetic outcome of the donor area. I am not a big person and don't have a lot of extra weight. I would not want my butt to be flat and puny, but I would want enough removed from the donor site to duplicate the size of the 400cc implants I have now. They are not far from the size I was prior to pregnancies and breast feeding.
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Hello, so you talked to both PRMA and NOLA? I have to decide between both. I am looking at DIEP and I have enough fat for sure. What are pros and cons of both places from your perspective? I live within two hours of PRMA so leaning there but I just want to be in good hands. It seems like both places are excellent.
Lisa
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I have only consulted with NOLA. I am not a candidate for DIEP due to prior abdominal surgeries. Being able to do them both at the same time is a very important consideration for me. And the NOLA surgeons do a lot of these and their experience allows them to do the procedures in a lot less time than most others. Also, their years of experience shows in the artistic outcomes of some very difficult cases.
However, if you are a DIEP candidate then having competent surgeons within a two hour drive is definately an advantage in the Pro column for PRMA, especially since it is more than one surgery. But do consider your long term aesthetic results and how far the surgeons go to get everything just so. Seems like the NOLA docs will not stop until they can do no more and the patient's tolerance for more is the only limiter. The PRMA docs may do this too, I just dont know about it as I have not read many reviews of their work and seen no photos of it anywhere.
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Tampa,I don't know about your insurance,but mine tried to force me to have two separate SGAP surgeries because there is a doctor in network who performs SGAP.This doctor only does uni and he refused to do two separate operations,said it shoudl be done in one surgery for many reasons.I got tired of fighting insurance to approve out of network,so we are switching insurance and next year I will have bilateral simultaneous SGAP in Charleston with Drs.Kline and Craigie.
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Most doctors don't do simultaneous GAPS because as Nordy and Diane said they need two experienced microvascular surgeons working at the same time to do them. With any surgery I personally feel it is important to ask very specifically about the role of residents and fellows. (This is NOT an issue at NOLA since residents and fellows are not working on us). After having significant problems with a DIEP done by a well trained but it turns out inexperienced local plastic surgeon who was working with a surgical resident I will now allow only very experienced surgeons to work on me. If I am at a hospital where there are residents, fellows or medical students - I alter the consent form so that it states that I will only permit them to observe but won't allow them to participate in my surgery in any way. This is just my feeling about things.
Jenlee- I take tamoxifen. Every one is different but I have had almost no side effects with the drug (some leg cramps that stopped when I began working out harder at the gym and at one point an endometrial polyp that had to be dealt with). I was told that if I really had problems with tamoxifen they could give me a drug to shut down my ovaries and then move me on to an aromatase inhibitor - it was never necessary. One thing I did which I think is helpful -look up the drug and food interactions with tamoxifen so you don't eat or take anything long term that will interfere with its effectiveness. Grapefruit juice is problematic as are some of the antidepressants and benadryl among a few others. This is not a big deal - but just something to be aware of.
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It's not just the team of surgeons that's important with bilateral SGAP, it's the expertise of the OR staff. Flipping a patient mid-surgery isn't easy, and bilateral SGAP tends to be a longer surgery. You wouldn't want to have the surgery at a place that didn't have a whole team of people who do it regularly.
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