A couple of questions for DIEPsters (or TRAMsters)

Wow - such great information - so glad I found this thread.   I'm scheduled for DIEP reconstruction in August - have done LOTS AND LOTS of research and am pleased with who I am using.   His name is Mark Deutch - in Atlanta, GA.   After reading your comments I now have additional questions for him - thanks so much!!   I'm still laughing about the hair thing.  I'm with most of you - I can handle a little hair - after everything I've been through - that is MINOR!!

 I attempted to have surgery with the NOLA group and was very dissapointed to find out how they handle insurance and up front expenses.  I don't know about all of you but I don't have 20,000 to pay to get a new boob.   Besides the doctor that is doing my surgery STUDIED with them so I figure he is up on all the latest. 

Someone mentioned about losing their belly button - is that common??  I guess the PS fixes that - right?

I want to mention something that I have not seen discussed on here before - I had chemo - then mastectomy and lymph node removal - then 35 radiation treatments - the scar tissue was really bad from all that - especially the radiation and my breast surgeon sent me to a PT that specializes in breaking down scar tissue - it's called Myofacial release.   I have to tell you - it is AMAZING the difference in my incision and under my arm and chest after about 2 months of treatment - the skin is soft and flat -  the stiffness is almost gone and the color of my skin is natural looking now - I am VERY pleased.   They have told me that they will be able to help me with the scars (abdominal and breast) after the upcoming surgery.   Check out your area and see if there is someone who uses this technique - you won't be dissapointed.

Mikita, when I had necrosis, one of the lumps was quite painful for a few months.  Gradually, the discomfort went away and I cannot feel it any longer.  You are still healing and will experience different sensations throughout the course of the journey. Does the entire breast hurt, or only where you have the hard areas? 

MomsDaughter:

I had DIEP and have the smaller circles for the flaps. The circles make the ends of the foobs cave in, but the left has evened out and is even with the rest of the breast. However, the other one is very  'caved in' and I'm wondering if they do fat injections in the flap?

I will be going to my PS in 3 more weeks with this same question. If she tells me there's nothing she can do with the square ends, I want to go to NOLA. I feel they could probably do something to correct this. What do you think? Have you seen the circles that made the foobs square on the ends?

Ruby:

That's exactly how one of mine is (a hard spot that makes the skin stick out further than the circle).  I've been massaging the hard skin, hoping it will soften up and cause everything to fall into place. Also, my boobs are full, but don't project out ( like yours). Without a padded bra, you'd think I was flat chested, but they fill up the cup of a "c" bra (without the pointed ends). 

On my last visit to the PS, I asked if my circles would even out with the skin and she said 'probably not', but the left one has. Also, the PA said she'd seen women with deeper circles and they filled out, so I'm still holding out hope.

Have you used any scar creams? I've been using mederma but I am seeing no visable results. I read aobut something else to use on scars and the lady said it was working wonderfully. I thought I wrote it down but can't seem to find it. I'll have to look for the thread again.

Lets keep in touch with our progress. I'll be looking forward to how yours do in the coming weeks.

Swimangel: I sent a PM

Jpernot, I've heard of Dr. Gayle, but only know of someone who used him for implants, not DIEP. Have you definitely decided to use him or just considering him? There are a number of PS options in NYC who have done hundreds/thousands of DIEPs, not sure about Dr. Gayle. I used Mark Smith at Beth Israel Medical Center in NYC for bilateral DIEP and was very happy with him. You can check out a Live OR video of him performing a DIEP (and being interviewed about it) on his Beth Israel website. If you do a search for him on this website you can also find a link to it.If you want any more info about Dr. Smith and my experience at B-I, feel free to PM me. I also really loved the BS he operates with, Susan Boolbol.

By the way, I had to change breast surgeons in order to use Dr. Smith. I had been seeing the same BS for 10 years so it wasn't an easy decision. But I wanted to be sure I had someone who was really experienced with DIEP. Of course, I wouldn't have considered Dr. Smith if I wasn't equally satisfied with the BS he operated with, and I was. I'm not trying to get you to change breast surgeons, just want to be sure you're considering all your options, in case you feel you need to go with a PS based on your BS.  Dr. Smith also operates with BS Michael Osborne, who used to be at NY Pres/Weill Cornell. (isn't that where Dr. Gayle is?)

 So, in terms of what you should ask Dr. Gayle, you should find out how many DIEPs he's done (someone should have done hundreds of them to be considered really experienced with DIEP), make sure you see photos of his DIEPs, and ask if you can speak to a couple of his DIEP patients. Also, ask him if he can guarantee you that he won't be taking any muscle. Some less experienced PS say they won't know until they do the surgery whether they will need to take any muscle.  Good luck with your appt, I hope it goes well for you!

Mikita - thanks for the PM - I sent you one back!

ASL - sorry I didn't respond to your earlier question about "drape".........I'm not sure where I read that. I've done so much reading and research online regarding free-trams and Dieps, this piece of info was stored in the back of my brain, but alas I don't remember the source! I'm so happy that both your breasts have nice drape..........again testifying to the skill level of Dr. Smith!

Jpernot........I hope you get the answers you're looking for from your PS tomorrow. Be sure he shows you before/after photos of his patients that he's done Dieps on. Also - ask him how long your surgery will last and what HIS infection rates are - and also ask him what HIS rates of abdominal hernias are. I made the mistake of not being more careful about choosing my PS.........my breast cancer surgeon who did the mx worked with him and recommended him, and that was enough for me (especially since I was so anxious to get everything over with). I should have at least interviewed one more PS.........don't be afraid to ask your breast cancer surgeon for the name of another PS who he works with so you can get a second opinion. One other question - ask your PS if he works alone during your reconstruction - or does he have other surgeons there to assist him. Finally - ask him how he handles Stage 2 of the revision........if the new breast is too large, does he work hard to make it match the other side?

Be sure to educate yourself on the risk of hospital acquired infections - there are 15 steps you can take to safeguard your health:

www.hospitalinfection.org

Good luck Jpernot and let us know what your PS says!

Jpernot, one more thing--you should ask any PS about their DIEP flap failure rate. Most of the very experienced DIEP surgeons have success rates of 98-99%. Good luck tomorrow! Pls let us know how you make out.

Hello,

I read through this very interesting thread.  I had bilateral mx with trams recon on Sept. 26.  I'm happy with the results - the hair on the circles has disappeared - and they are nicely shaped and naturally droopy.  BUT I have 3 areas of necrotic tissue - above each breast and a large area where the abdominal drains were.  Although my oncologist and onco. surgeon insist the dead tissue is no big deal, my PS has scheduled me to have the 3 areas removed.  I am so torn.  I'm scheduled for June 26.  Has anyone had this necrotic tissue removed?  BTW, I used the silicon strips for my scars and they really do seem to work.  I mailed away for them and they cost $125 for, I think, 2 or 3 strips - which I have worn for months.  Has anyone felt their abdomen getting very hard - almost as if the muscles are going into spasms? I am always aware of my abdomen scar - never painful - just know it's there.   Although I am very happy to have what look like breasts, I hate not having nipples.  I have to wait until this June 26 surgery heals before getting nipples.  After the ordeal of recovery from the trams, I am not looking forward to yet another surgery.

I LOVED DR GAYLE!  He was so fabulous, thorough and comprehensive.  It was a little wierd that he had me stand in front of him in just my undies, while he drew lines all over me explaining what he would do; but it did make the whole thing more comprehensive.  He LISTENED to me and treated me like the intelligent woman that I am.  He gave me a bit of info that I hadn't learned before.  I've had two c-sections.  He said that those may compromise the blood supply uptake for the DIEP.  He can redirect an artery and vein to the DIEP but if the vessels in the tissue severed by the c-section have been sufficiently damaged, they won't survive the transplant and then necrosis will set in.  VERY interesting.  I haven't read that anywhere.  I can do a CAT scan to see how healthy those vessels are around my c-section incision.  Then he can tell me if I can do a DIEP.  If not, he can do a modified TRAM taking very little muscle.  We touched briefly on the insurance issue, his people are going to look into it.  He spent a long time with me and as a result we needed to postpone two appts for the children in upstate NY.  I was stressed out by that and then my hubby and I had a fight.  A miserable end to what was a good day.  Have any of you had fights with your significant other when the stress level peaks?  It was terrible.  I told him that he was such a mess with my bc dx that I can't count on him to do anything, that I have been worried about him every minute because he is falling apart.  I've been feeling like I have to EVERYTHING and HE  is the patient, not me.  We made up, but he is still acting cold.  I hope it is different today.  It really is too bad, because a friend of ours made such a nice dinner for us, and the mood was a bit sour while we ate.  Maybe leftover day will be cheerier. 

Ladies, any advice on relationship maintenance during all this stress?

Jude

Jude, So glad things went well with Dr Gayle. I've seen women write good things about him on the YSC Bulletin Board but didn't see anyone posting about their DIEP with him. So it will be great to hear how things go with you if you use him. It's always good to know about other options in terms of breast surgeon/plastic surgeon teams. Who is your BS?

I know this is an old post, but is somewhat on-topic for a question that is a variation of it, so I'll start from here and see where it takes us. It's about minimizing the need for a "patch" and whether it is worth the steps in order to get there for me.

I had a unilateral Mx almost 2 weeks ago. We delayed reconstruction for multiple reasons, one being that there was a 30% chance I would need rads (this ended up not being an issue for me after pathology came in). The other thing that happened in my Mx is that about 1/3 of my skin had to be removed, so it was not skin-sparing. Throughout discussions with my PS, I have decided on a stacked DIEP procedure. He's given me two options relating to this: (1) proceed with the stacked DIEP next week in order to get the TE that was placed inside me out before infection has the chance to set in (which he says usually has an onset around 3 weeks post-implantation if it will be an issue for me), or (2) keep the TE in and use it to stretch my breast skin for the next 4 months to get to a place where I may not need a patch, or if I do still need one, it will be reduced in size. So potentially, I could get a better cosmetic result by waiting, but there are some downsides:

(a) There's always the risk of infection with TEs. Some people get them, others don't. My PS was not at the Mx surgery (I was at a MD Anderson for that), and another PS put the TE in and sewed up the Mx site. So I am leaving myself open to dealing with TE issues if I keep it in.

(b) The TE is under the muscle. My PS tells me that there is a small chance that when it expands, it does not do so entirely in a projecting forward way, but instead there is some expansion backwards in an inner fashion causing anatomical changes (e.g., it bumps up against ribs, which are a little pliable and then shift). I imagine because my skin is so tight having lost 1/3 of it, there will be some downward pressure on the TE expansion.

(c) There is the achiness associated with the repeated fills over the next 4 months. He likened it to having my braces tightened. It will mean repeated visits to him for fills, so it will just be a time and ache effort over a 4-month period.

He summed it up by saying that this could be a "long run for a short slide," but it's my decision and he will do whichever I prefer. Is it worth all of the cons to try to avoid the patch? Or, is that really not that different other than the hair issue, which I can resolve with laser or electrolysis (I do have dark hair, not light)?

Any thoughts from those living with the patch (and/or those who have lived through TEs) is appreciated.

Thanks!

Thank you, Meow. I had already had the regular TEs put in when I saw your note. However, I did ask my PS about them at next visit. They love them, but said wouldn' work for me. I don't remember exactly why. I think it was bc I might have needed radiation, and Aeroform doesn't work as well in that situation?