Nipple Reconstruction Cylinder, anyone?

DebinATL

Hi Kim - I don't have much news yet.  I had the Cook rep get in touch with my PS and nurse.  I haven't heard anything yet - so I am going to send them an email to see what's what.  I spoke the Cook5 rep, but she wasn't much help other than the % of shrinkage on average from their information is 20%.  I'll let you all know what I do find out...  Take care {{{{hugs}}}}} 

DebinATL

The FDA has approved the Cook Biodesign nipple cylindar as of July 20, 2011.  YAY!!!

http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/DeviceApprovalsandClearances/510kClearances/ucm261781.htm 

DaisyinAustin

Hi Ladies,

wanted to update ya'll on progress with the reconstructed nipps. I'm 5 weeks out from reconstruction with the Cook Biodesign Cylinder, and to date am pleased with the outcome.

While the new nipps have shrunk some, it's a minimal amount. The projection is still really good but I am still wearing nipp protectors. I'll wear those one more week and then the true test begins. My PS says once those come off, they'll shrink further. That said, I'm very excited to read DebinATL report on the Cook reps statement of 20% shrinkage rate with the cylinder. If mine stay this size or near this size, I'll be happy. My new nipps may still be a bit bigger than normal, but it's been so long since I had my own nipps, I can't recall what size "normal" or average may be.

At any rate, if I can answer any questions please don't hesitate to ask. I hope those of you who want the cylinder are able to get it. If not, I know an amazing PS in Texas that can help!

DebinATL

Thanks DaisyinAustin for the update!  If I don't get any feedback from my PS here in Atlanta - I might be heading that way!!

I do have some questions:

1) What type of nipple procedure did your PS do with the cylinder?  In other words, what type of surgical cut?  ie  flap, star.... clown... just kidding.

2) Did your PS go with a slightly larger cylinder or about the same size as you were?   

3) What is the name or type of nipp protectors did he put on you and for how long?

4)  When will you be able to wear a regular bra? 

Thanks for your input!!!

DaisyinAustin

Hi DebinATL,

the procedure he did was some type of oblong cut. There was more to the name of it and I'll find out exactly what he calls it but I was surprised as I've never heard of that procedure. I asked why he wouldn't do a skate or C flap as those seem to be the norm, and his response was that the oblong cut makes for a better reconstructed nipp. "Clown"...that's hysterical!

No, my PS used the smallest of the cylinders. He noted since I'm small framed, 5'2" and 110 lbs., he felt this was best.

The nipp protectors are my own creation. I was sent home with 2 spongy makeup pads stacked on each other with holes cut out and covered with gauze. I found those to be super uncomfortable in a bra so I bought the cotton-like makeup pads and stack 3 high with holes cut out, then cover with 1 thin layer of gauze. I will wear these a total of 6 weeks.

My PS directed me to wear a bra almost immediately. I began wearing a normal bra 3 days post nipp reconstruction, 24/7.

I'm still going to try to post pics and will let you know once I'm allowed access. Hope this info is helpful!

motherofpatient

Deb, who is your surgeon in Atl.? Have not heard about this procedure and only got a clinical site that said they are not recruiting yet and only in Tx when they do.

DebinATL

Thank you so much DaisyinAustin!!  I can't believe you immediately were able to wear a bra!!!

Motherofpatient: I will send you a private message. 

geewhiz

Hi Again Deb!



You guys keep me posted on this...I am super interested in having this procedure!!

DebinATL

Hi Geewhiz (love your name!

Just an update, not much to report yet, but I am not giving up!

I have asked the Cook Biodesign representative for the Atlanta area to contact my PS (and I sent my PS's nurse a text, but no response.)  I sent my PS a note today via email to see if she is going to be interested.  I will let you know what I hear.  I still have a feeling she is not going to be interested.  So, I am still trying to get names of doctors in the Atlanta area - I have spoken directly with the local rep but she will not give me any of the Drs. names (she says it is for legal reasons) - you would think by me "asking" for one of their clients it would be a feather in her hat.  I say #$%^&* legal-scmegal.  So, I have sent an email to Cook.  I'll let you know what I find.  I am not going to let them run my life.  Just like having BC - you got to take charge.    I'll keep you all posted.  Another note.... if I am not responding very fast to posts, please send me a PM - that way I will see it in my normal email and respond....  I am currently trying to get ready to divorce my husband of 19 years...... so I have alot going on.... Needless-to-say, I just woke up from being asleep for 6 years.  Sorry.. off-subject....

DaisyinAustin

Hi Ladies,

Wanted to provide another update as I'm almost 3 months out from nipp reconstruction with cylinders. Saw my PS last week and he and I feel as though the final outcome was better than anticipated.

The shrinking has stopped and the projection is still good. I can see them under t-shirts when not wearing a bra but they are completely hidden when I am wearing one. It's really great and I couldn't be happier!

I really encourage those of you interested in this procedure to urge your PS to learn more about it. I believe this is the closest thing to the real deal that I may ever see. Really glad I had the option to have the cylinders and I hope more of us have similar experiences. I'm still not on the pic forum otherwise I'd post photos but if I can answer questions please let me know.

geewhiz

That is so totally fabulous! Why can't you post on the picture forum? If you pm whippet mom she will let you in. I know lots of people would be interested in your results.

Do you mind sharing who your surgeon is? Or can you pm it to me? I'd love to follow their work!

DaisyinAustin

Hi Geewhiz,

I will email whippet mom and ask for permission. I wasn't sure I had posted enough times to be allowed in. I'll do that now.

I will happily share my PS's information, he's the absolute best of the best! 

Dr. Raman Mahabir, FRCSC, Diplomate- American Board of Plastic Surgery, Chief-Section of Microsurgery and Associate Professor, Department of Surgery at Scott & White Healthcare, Temple Tx. http://www.sw.org/Dr-Raman-C-Mahabir

DaisyinAustin

Hi Ladies,

Thank you Whippetmom and Timtam for allowing access to the pic forum. I think I was able to post 2 pics for anyone interested in my outcome with the cylinders.

I'll complete my journey on 9/19 with nipple tattoos. I'll post more pics afterward.

jendrey

Hi - did you have radiation?  I'm wondering if radiation would be a factor against using the cylinders...I hope not. 

(((Hugs)))

DaisyinAustin

Hi Jendrey,

no, I didn't have radiation so unfortunately I can't answer your question. I'm sorry!

I would think, and this is merely a guess so please keep that in mind, but if you are a candidate for the traditional nipple reconstruction procedure that you might be a candidate for cylinders. Again, that's purely speculation.

If I can provide further information, please let me know.

Renata

Hi Daisy,

I looked at your photos and must say you look AMAZING, just wonderful. Thank you so much for sharing. I had a single left mastectomy and reconstruction a year later. It was always my purpose to have the nipple procedure done but the input about  how little the projection lasted has held me back. Maybe these cylinders are the answer. I'll be definitely looking into it.

D4Hope

Happytrisha I had the same procedure as you and two years later still happy with results.

DaisyinAustin

Hi Renata,

thank you so much for the kind words. I too, was very hesitant to undergo the nipple reconstruction after hearing of the projection failure. I kept thinking, why even bother? Thankfully, my PS is very forward thinking and on the leading edge of new technologies. I'm incredibly grateful to have the opportunity to receive the cylinders. I hope the information and photos are useful to everyone who endures this journey. This site has been an invaluable resource!! I'll post more pictures in a few days as I've just had the tattoos done.

emersongrace

I am scheduled for exchange in 3 weeks and I am now getting nervous about nipple reconstruction.  I had a BMX but was able to save 1 nipple.  My other side has a flat spot and my PS says it will be hard to match my remaining nipple.  He has never mentioned the cylinder.  Does anyone know if they are available to all PS or are they still limited in trials?  It sounds like a good option for me if available.  Also, has anyone ever had their remaining nipple tattooed?  Seems like the best chance to match color to me. 

hopefulhealing

Hi ladies, this is really interesting. I am a failed NSM.  So many complications to go into but still grieving the loss of what I thought I would get to keep.  My situation is strange.  I have a full areola on the right and 3/4 on the left. The projection was removed.  So now what!

My PS is saying he wants to take tissue from my ear lobe or fatty part of big toe to make the nipple.  Have any of you heard of this?  I want to get this done by the end of the year as I will be at two years then.  I like all of you want this finished.  He says I do not have enough skin to do the oragami thing.  I am really at a loss.  I can't imagine how this will work.

The cylinder sounds interesting.

Good luck to all of you going through this last step. I have a revision done on the 20th. Changing out textured to smooth implants to help with the rippling.

supersally

Determined - I am in a similar situation.  I did NSM, kept both areolas and my left nip but right nip failed so no projection.  PS tried to do a graft using scar tissue from the port scar at exchange, which also failed.  Now I'm left with a scar that is flat in the middle of my areola.  I have high hopes that the cylinder might be the answer.  Mine has said my options at this point are to 1) take from left nip - no way! 2) take from ear lobe.  Hadn't heard of fatty part of big toe, sorry but that one makes me laugh a little  Plenty of fat on me, but none there that I can see!

Emerson - did you have your exchange yet? 

 I know of two others in a similar siutation, TinaT and Slinky, both are on the pic forum.  I'm on the pic forum as well, feel free to check my pics out and let me know if you look similar.

DaisyinAustin - I can't thank you enough for putting this info on BC.org and on the pic forum.  It is a result of us pushing our PS at times that makes things like this take off.  Austin may not be too far for me to go for a nip, either, if my PS isn't doing this.  This may not be a solution for everyone, but if you help just one more person get a successful, aesthetically pleasing result you will have made a huge difference!

DaisyinAustin

Supersally,

I've not been on the boards for a little while and will go to pic forum next but I'm so excited to see all of these posts in regards to the cylinders. No need to thank me, we're all in this together, but your words bring me to tears!

I'm 4 months out now and still very pleased. You're correct, it may not be a good option for everyone but in situations like yours, EmersonGrace and Determined, you ought to at least be informed of the possibility.

Although I live in Austin, I had all of my surgeries done by my amazing PS in Temple, Tx., which would be even closer for you. If you need his information I'm more than delighted to share. All the best to each of you!!!

supersally

bumping thread.

Anyone out here have recent experience with the NRC to share?

supersally

Bump

marial

There is currently a clinical trial going on with these at Stanford ..is anyone doing this? I am considering it

lopsided_blogger

I am considering doing this via trial--they have one at four locations now: MD, CA, SD and CO. Would anyone who's had this procedure done feel like posting an update? Are things going well; any problems, etc. Were you able to use just local--I really don't want general again. How long did the procedure take, did it hurt then or after and how long for healing? 

Also, if you're doing the clinical trial, what costs do you have to pay?

Thanks,

lopsided blogger

supersally

Any new info or experience on the Cook Nipple Recon Cylinder out there?

txmomof2

HI SuperSally.  I just sent you a PM about my experience with the nipple implant but wanted to let everyone else know too.  I love it!!!  They were kind of like gum drops right after surgery but have now shrunk to a perfect size.  You can see them thru t-shirts but with a bra, you can't see them.  The outpatient surgery took 1 - 1 1/2 hrs for both sides plus I had a small revision on one side as well.  I just had to wear a little piece of gauze over them until the stitches fell out/reabsorbed which was a few weeks.  I would definitely recommend the Cook implants! 

supersally

Thank you, TXmom!  I'm going to contact your PS in Dallas and see if it might be a possible solution for me.

chrissybear

Hi!

I had this done almost 4 weeks ago and the tip of my nipple just all came open :-(

I have to call my ps tomorrow

I'm so upset!!!

If you can please email me and then I can text u a . Pic



Sincerely



Chrissylee

From Minnesota
Chrissylee1993@gmail.com