Nipple Reconstruction Cylinder, anyone?

DaisyinAustin

Ladies,

I'm scheduled to have nipple reconstruction 6/21, and am trying to decide which route to go (skate flap with cylinder vs. skate flap without cylinder). Wondering if anyone has experience with the nipple reconstruction cylinder?  Apparently, it's supposed to aid the reconstructed nipple by providing a scaffold for re-establishing a natural nipple projection and encouraging surrounding tissues to grow into the scaffold.

It sounds great but I'm having trouble finding anyone who has the cylinder(s) and what their experience has been like. Any information is sincerely appreciated.

EileenKaye1

I had alloderm--with full graft.  Worked great. Good Luck, Eileen

mtks

Daisy- I will be having skate -flap w/ cyclinder at my nip/areolaw/FG in June.

It sounded like a good plan for me. I have read that the nipple can reduce in size by 50% sometimes and this cylinder could possibly help retain size.??

DaisyinAustin

Eileen and MTKS, thank you for responding.

Eileen, I'm happy to hear the alloderm with full graft worked for you. So you're happy with projection and the overall appearance?

MTKS, I'm very much like you, it sounds like a great option since learning about the nipples reducing in size and the disappointment many women have when the end up with little to no projection. When is your surgery in June? Would you mind letting me know of the outcome? 

Thank you both!  

mtks

Daisy!  JUNE 24 is my surgery dateI will let you know how everything went. Hopefully I will be jumpn for joy in spirit with how everything looks. I have my pre op appt in a few weeks and I should know the lay out plan.Hopefully I will walk away from my ps app. feeling confident. I need that so badly right now. I will find out more about the cylinder also. I just want a "natural looking" nipple/areola/breast!!!! I had a bi-lateral mastectomy so my ps should be able to make everything in balance.

orchidgal

I've been wondering what to do as nipple areola surgery is supposed to be my next surgery, but I'm hesitating because I see so many flat nipples. I'll see my PS for a consult tomorrow. His office spoke with me a couple weeks ago saying that he wants to do "large scale" fat grafting during the nipple surgery and that just freaks me out. I already had to have an implant revision, as there was so much extra skin that there were too many ripples (the PS said) to fix with fat grafting. Now that I've gone up two sizes larger he;s saying he requires to perform "large scale" fat grafting. I don't get it, but will ask tomorrow. And am determined to wait it out. I've also written tonight to the man who is in charge of the Cook Biodesign cylinder and hope to hear back. I'll also take the print out of it to my PS tomorrow. After five surgeries, and 20 hours under general anesthesia this past year, I feel burned out! and also, rather lost. I ordered those three-D temporary nipple tattoos and have a pair on now - they are fun, but since I don't have a boyfriend or husband at the moment it's me looking at them in the mirror. I've decide that the tattoo route won't make me happy or feel fulfilled or completed. Let's hang in there and see what we can drum up in the nipple department, ladies...

mtks

orchidgal- what type of FG does your ps do?

orchidgal

My PS says he does regular lipo, and will use it not just on the upper pole but all the way around to create a more natural looking recon. I told him about the Cook Biodesign Matrix (cylinder) and he is very interested. He also told me he will go to train with Dr. Kouri in Florida in July. I asked if he could re-do me afterwards, but he said he didn't want to touch my revised implants - they look really good - but would be very interested to learn of the Cook cylinder. I've written an email asking the man at the Cook headquarters to contact my PS. I want to wait to see if he can use it on me. The clinical trial using the cylinder will probably start in July. They are waiting for cleareance from the FDA.

mtks: what type of FG does your PS do? Does he use the cylinder for nipps?

EK1: what is full graft? how is your result so far? Are your nipps still standing?

EileenKaye1

graft --from inner thigh for areola and nipple area.  PS used alloderm for nipple--looks great after 4 years.  Cylinder should give even more projection. 

Your PS sounds very promising.

Good Luck--Let us know.  Eileen

DaisyinAustin

Ladies,

I've been away for a few days and just saw these posts. Am I understanding this correctly, the Cook cylinder has not been approved by FDA?  I just assumed it had been.

pinecou

Ladies,

I did the thigh skin areola reconstruction and my nipples are flat.  I had the areola complex tattoo and they look much better but still flat.  I had a consult w a new PS today and he suggested the cook cylinder.  Any thoughts? Has anyone had them?

geewhiz

I emailed someone at cook, and no clinical trials have not started. I'm keeping an eye on it though. Sounds promising.

HappyTrisha

I think I am the only person in the world who did not WANT nipple projection!  I also did not want the thigh graft because I was sick of surgery.  I talked my PS into using the skin from my breast and shaping it in oragami fashion to make a very small nipple - which is exactly what I wanted.  5 years later it looks the same.  I also never got around to getting tatooing, and I'm fine with that too.

lago

Trisha you aren't the only one. I want my nipples to look "unexcited" if you know what I mean because lets face my old ones were only "excited" much less often than not.

Just had my exchange so I haven't had that conversation yet but my PS also uses the skin from breast site. No stealing it from someplace else.

DaisyinAustin

Hi Ladies,

I'm a week out from having nipple reconstruction with the Cook cylinder. So far so good from what I can tell but it's way too early to know what the final outcome may be.

The nips are still enormous but I'm waiting for them to shrink. I'm happy to keep you all posted as to the outcome. I don't believe I have enough posts to be allowed into the photo forum but I'll work on that.

Keeping my fingers crossed that the cylinder may be the answer many of us have hoped for!

geewhiz

Oh gosh DaisyinAustin, that's so exciting! Are you one of the first your surgeon has used these on? They told me they hadn't started trials of them....but I noticed they are easily ordered. It's a medical device, so controlled differently.

I do not have another surgery in me that cuts me anywhere else....not happening. So fingers crossed this works! Trish, congrats on your results holding so long. I hear so often that women who have the twist lose projection, so you are very lucky. I had rads, so I think that's a double whammy for my odds of flattening quick. I have heard good results with fat grafting to the area under the nipple to create a mound, then using alloderm in a twist.

lago

Interesting about the fat grafting. I wonder if that's what my PS does… assuming he can find enough.

geewhiz

Not an issue I had Lago, lol. He took one look at me and said "oh yeah, we have plenty to work with here".

I actually hated the lipo. I amazingly had never had cellulite. The fat grafting on my thighs has made them look a little lumpy in the right light. It's a little perturbing. I know if I go back, it can be smoothed, but anesthesia and immune systems have issues. i am working very hard on keeping my bloodwork high right now.



I am ok with getting the nipples done because I know it is done without general anesthesia. I guess the cylinders though might require general?

lago

Geewhiz it was an issue with me. I had my exchange this past Friday. PS didn't do all the fat grafting he wanted to because he couldn't harvest enough fat. Not sure why he couldn't find any on my thighs? Trust me they really are not small. I will admit to no stomach.

I too hate general anesthesia. Local is so much easier. BTW I heard over time that lumpiness might work itself out.

pinecou

I've heard that the Cook cylinder failed a few times.  How is it working for you?

DaisyinAustin

Geewhiz, when I asked how many nipp reconstructions my surgeon had done utilizing the cylinder he said approx. 40. The only issue was that he had no tenured data to tell me what to expect down the road. The patients he'd performed this on were only 4-5 months out.

Pinecou, if you're question was directed to me, so far i'm pleased with the results although they are still huge and I'm 9 days out. I'm wondering when they'll shrink.

Also, as an FYI, my doc did give the option of being awake during the procedure but I was highly anxious about the entire thing and opted to be knocked out. Hope that helps answer the question about anesthesia.

    

DebinATL

Everyone: Thank you soooo much for your info. . . .  I had been waiting for "Poppy" to respond as there is a thread that she started re: Biodesign Nipple Recon Cylinder but the thread never got updated, so I assume she didn't go thru with the cylinder.  I had my BMX Sept. 2010 and nipples origamied(ha-ha)  and I had asked my PS will the projection shrink alot.  I got the answer "some".  Well, they did shrink a bunch......definitely 50% or more.  

My PS doesn't do the cylinders.  I'm still going to bring her the Cook Biodesign cylinder literature that I printed off the web and see what she says, but I have a feeling she might not be interested in doing the procedure.  I am wondering even if they could do an implant after a nipple has already been surgically formed?  Wonder if I should just ask for Alloderm - or can you do Alloderm after the fact?  Any info is greatly appreciated!!

DaisyinAustin:   Thanks for starting this thread and hope you are doing well.  Keep us posted on the shrinking, k?

Orchidgal:  Have you found out any info from the guy at Cook Biodesign HQ? Did he contact your PS and discuss?

DaisyinAustin

DebinATL,

very happy to share info here, we're all in this together.

I called my PS yesterday, was a little concerned that the new nipps were still huge. He suggested I remove the nipp protectors if I was overly concerned however, he strongly recommended I wait until the next appt. (next week), and then we can decide what the next step should be. He reminded me they can always be reduced. I'm going to keep them in place for now and see how it goes at the appt.

Also, I called Cook Bio Design before the procedure and did receive a return call from one of their reps. At the point he called back I felt I had all the information I needed and didn't have an in depth conversation with him but I do still have his contact information. If anyone would like this gentleman's number let me know and I'll send it to you.

njbhwgirl

I had nip reconstruction and like many others are disappointed when they went flat. I had aerolas tattoos done 2 weeks ago and they helped make the nips look a little better.

 My question is if this cook cylinder becomes the norm and creates great nips,I am wondering if I can get mine done again. And what would become of my tattoos? Can they be fixed as well?

I know I am jumping ahead here but if I can improve how I look, I am all for it

DaisyinAustin

njbhwgirl,

when I was deciding what to do regarding nipp reconstruction I asked my PS what would happen if I decided to go with 3D tattoos but later wanted nipp reconstruction if I was unhappy with tattoo results. My doc explained that he could do it but it would be more challenging because once you've been tattooed he'd be working within a confined area to recreate the nipple. He did confirm his ability to do it, and the tattoos would be revised to accommodate the new additions. Also, he noted the end result may not be as aesthetically pleasing had it been done the other way around.

I did not ask if one could elect to have the cylinders constructed into the nipple mound if the projection failed. I'm going in for my follow up next week, I'll ask him and update this post. I hope half of this information is helpful.

njbhwgirl

daisyinaust:  thanks so nice of you..

Good luck

DaisyinAustin

Hello Ladies,

Just wanted to provide an update on the cylinders. I visited my PS earlier this week and had sutures removed. He said things "look great". The new nipps are no longer swollen from surgery and have begun to shrink. They have not shrunk by much but they are smaller than they have been. When my doc asked what I thought of them it was really challenging to answer. It's been so long since I've had nipps I really don't recall what size they are supposed to be. Anyway, he recommended wearing the protectors for a total of 6 weeks. Only problem is we don't know how much further they may shrink once the protectors are off. When I asked how his other patients were doing with the cylinders he responded that it's still too early to tell. Sort of a bummer.

Also, I did ask about having cylinders put in after the initial reconstruction of the nipple and he advises it depends on the doctor as well as the state of the reconstructed nipple. Sorry, not exactly the response I was after.

DebinATL

Thanks to everyone for all your input!!

Orchidgal:  Was Dr. Kouri recommended by the Cook Biotech Rep?  Or how did Dr. Kouri come into the picture?  Do you have a full name on Dr. Kouri in Florida?  On the web, I see one Dr. Koui that is a General Surgeon and Neurosurgeon in 2 different locations.  The reason I ask is becuz I am located in Atlanta and if insurance will pay - maybe that's the route I might go.

Thank you very much!

Deb 

Just a little input ya'll about my nipps:

I am into my 7th month after my nipple recon [nipple mound made with my stomach skin from the TRAM flap - sorry, can't remember the "Name" of the type of oragami she used, I will find out tho ]  Even tho I have a tiny bit of projection, I am somewhat disappointed.  I haven't had the tatoo's yet.  Mainly, because I need another minor surgery to tweek one breast(radiated one) as it is pulling my skin down a bit and I am not even.  Anyway, I am sending my PS's nurse an email with the Biodesign scanned documents I got off the web and keeping my fingers crossed that my PS will look into it, but hesitate at the same time becuz she hasn't done a cylinder implant - but she is very talented.  What do you all think?  If she says yes, do I take a chance?  Or, go to someone that has already done it?  Doing my homework/research and I am leaning towards wanting the cylinders put in.  

geewhiz

Deb, I am in ATL too! Who is your surgeon? My PS was Losken at Emory...felt a bit like an assembly line,they stay so busy. I made the flight down to Khouri a few times and had him do some tweaking and grafting in January.

DebinATL

OMG!  Small world, right?  I'll send you a PM.....

Everyone:  I contacted Cook HQ and asked for a rep to call me.  He asked for the zip code of my surgeon so he could get me the correct rep.  I am hoping she can give me all the doctors names in the Atlanta area that have been doing the Biotech Cylinder procedure.  The guy on the phone said they have been selling them for about a year.  So, maybe we can get some more input. 

kim2005

Hi Deb and GeeWhiz,

I'm also in ATL!  If you learn what docs are doing this would you let me know as well?  I had my surgery 5 years ago and have lived with the flat nipple this long but would love to have a nipple again   Did you hear anything back from Cook?  Any local docs doing this surgery?  Thanks!