Still Uncomfortable with Implants

Kazeez... You said:

I am a slim woman and was told then that my only choice for reconstruction was breast implants or removing my buttock and repositioning it in the breast. Somehow that seemed ridiculous as then my buttock would be crooked. I can imagine how that could mess up your posture.

 I had the Hip flap surgery (using the buttocks) and my PS used a flap from each side, and then did a butt lift, so not only is it not crooked, but nicely shaped.

If people are struggling with LE, perhaps check out Marga Massey's website.. She is an expert with LE and has helped many women.

Just read that a "gummy" implant has finally been approved by the FDA.  Gummies have already been used by some PS's in clinical trials across the US but this is the first one that can now be used by everyone.  I've heard that gummies are harder and firmer than regular silicone so not sure it would be any improvement for those of us with issues but wanted to pass the info along.  My guess is, since they are new, they will be more expensive so PS's will be pushing them.  Just wondering if they will also share that gummies make look more natural but don't always feel that way which is a huge factor for those of us using them for recon.  

http://www.huffingtonpost.com/steven-teitelbaum/fda-breast-implants_b_1401766.html 

Kate, I'm so sorry you're suffering from LE since your revision. I began having LE after my original exchange. I've had pain since my mastectomies, I believe it's neurogenic pain. It lessened a tad after my 1st fat graft revision but after 2nd is pretty much as it was on my left side. For my revision, implant swap, Dr. K used incisions on the sides of my rib cage. Is that the same as what you're calling under arm pits? My left scar is lower so I'm fine with it but my right is higher and longer after 2nd grafting. Im still happier with Dr. K's work than my original surgeon. Dr. K explained fully to me about where my incision would be and I understood why. Espcially on me because my skin is/was so thin. My original PS was afraid to do any revision on the breast he mistakenly lowered during exchange bc he thought it looked too high during exchange (grrrrr). My expanders looked so great, better than the implants. He forgot I had scoliosis issues . At least he owned his mistake.

Dr. K has been really wonderful for me. My breasts are not beautiful (yet), but are much better than the balloons under paper thin skin. I'm thankful Dr. K took me on and when I'm "perfected" I can do nipple reconstruction that I was told by 2 previos surgeons, "no".  

 Anywho, I'm curious abt where your incisions were? Maybe Dr. K did change his technique by exchanging using the sides? 

 I hope you get your LE under control. I'm wearing a sleeve on my left and try to elevate them at night as much as possible. Massage is very helpful, even if you do it yourself by pushing down from wrist to elbow to shoulder with arm elevated. Push fluids toward your heart. Good luck  

 ETA: Someone else mentioned that some pain increase could be because of increased sensation after FG, that makes some sense. 

LAS123- My incisions are definitely in my armpits and that is how Dr. Khouri referred to them as well.  I questioned him about the risk of LE by doing armpit incisions and he said there was no risk and that it could not cause LE.  Now that I've educated myself I have learned this isn't true.  Any of us who have had lymph nodes removed, even SNB, are at a risk of LE (3.7%-13% for SNB) and incisions would increase that risk.  All the reputable organizations (cancer.gov, American Cancer Society, National Lymphedema Network, etc.) all state for prevention of LE avoid blood draws, i.v.'s and shots, and avoid trauma to the arm, that has had nodes removed.  (If nodes have been removed from both sides use the leg or foot.)  I'm pretty sure that an incision, and implant removal and insertion through that incision, would be considered trauma.  

mtks- Thanks for your kind words.  I didn't have anyone on my list for Kansas.  I did some research and the only place I could find so far was at lipoenhance.com.  They advertise they are doing fat grafting to the breast.  The issue, though, is it doesn't state whether or not he is a board certified plastic surgeon.  (I'm assuming not since it would be listed.)  There aren't a lot of reviews online about him either but the ones that were listed were unfavorable.  I wish that Dr. Khouri would make this information accessible to us.  I'm always amazed at what detectives we need to be to find these PS's.  If I find anyone for you I will definitely pass on the information.

Also, just to mention, that some of the PS's that have studied under Dr. K are not performing FG procedures (such as my PS in Chgo. suburbs).  What a shame!

I think the advice was put best by someone who said "when you consult a PS, they will likely recommend the procedure that they do best or most frequently."  So the PS that I consulted is recommending TEs followed by implants.  I wanted him to do immediate implants but he hesitated saying "it's like Casey going up to bat - I gotta hit a home run."  I know I can get a 2nd opinion with another PS but I am limited by an HMO (& don't necessarily want to pay oop), I'm just so tired of all the running around and I DO like this PS.  Any advice from those of you who have "been there, done that?"  And I'm concerned by all of you reporting so much discomfort with reconstruction!  How do we avoid it?  Thanks to any who are willing to shed some light for me. 

Lilli- I guess that did sound a little odd.  Let me explain.  The technique that Dr. Khouri has devised for fat grafting I support whole heartedly.  I truly believe if a woman has sufficient excess fat to donate, and doesn't mind going through multiple procedures, fat grafting is a huge improvement over implants.  There are no foreign objects to insert or replace down the road, no need to alter a woman's pec muscles (which can cause continuous discomfort) and the fat grafting can improve radiated skin.  There is also a greater chance of retaining sensation after MX.  This should be a procedure offered to all women who are interested and I wish it were easier to locate surgeons who offer it.

That said, I DO NOT support Dr. Khouri's technique he was, or is, using to swap out someone's implants by using axillary incisions.  And I feel he was negligent in not researching the risk of LE by doing so.  Though he is continually teaching PS's his technique for fat grafting he is the only PS I have EVER heard of doing it this way.  I have consulted with several different PS (one who was trained by Khouri) and all have said they would never use axillary incisions on any patient let alone one who had lymph nodes removed.  I hope this clarifies what I meant by my statement.

C-squared-  One thing I would have done different if I still did TE's/implants is I would have requested physical therapy right away before there was so much scar tissue, tight pec muscles, etc.  I don't know why this isn't recommended right from the start as a lot of us end up having issues.  Also, you may like your PS but can they provide what you feel is best for you?  It can seem like a huge hassle running around getting 2nd opinions but what your PS ends up doing is something you will have to live with forever.

mtks- I'm going to send you a PM. 

C-squared- I personally think the iron bra feeling comes from shoving something behind your pec muscles. First the TE and than an implant. I am happy to say that 6 months after exchange that feeling has lifted a lot and I am not aware of the implants all the time anymore. I do have LE and when it flares up they feel a little tighter. The best advice I have is to research all the options, talk to people who have done them and try to make a decision based on that info. I had my BMX very quickly and did not take the time to fully research. I did not even find BCO till 3 months after my surgery. I am also BRCA2+. Feel free to PM me anytime if you have questions.

c-squared- I didn't have TE(tissue expanders) and do not have implants under my pecs. I had the lat dorsi surgery and the iron bra is constant and it is the muscle brought around tightly across my chests. It is horrible! No one mentioned a thing about that or how extremely painful the back scars are nor the loss of back strength.

I know it is all confusing and well it just is and there is no right answer for anyone or the perfect solution. They all come with "side effects". All you can do is research and learn and ask questions and choose what procedure you feel the most comfortable with, ask tons of questions and if you can talk to the Doc's patients who have gone through what you are wanting to do. I wish I had talked to some of my PS's actual clients who had the procedure. 

Erika- Not sure if you're asking what implants you should be getting but there is a great thread on here called "BREAST IMPLANT SIZING 101" where our resident implant expert, whippetmom, can help you with the type and size of implant that is right for you.

http://community.breastcancer.org/forum/44/topic/746448?page=1 

Lalove: I wish I had an answer for you but I cannot even find an answer for myself. After a revision with TE implant put in light and smaller, I cannot find relief anywhere or at any time except lying down flat. I have read that the removal of the implants have not improved some gals' situations.

Wish I had an answer for you, but I live with this rubber ball in side me 24/7. The only thing that improved was when I went lighter I did feel some relief. That is the only thing. Sorry to be so negative. Still feel the nawing and pulling.

Hugs, sorry for being so negative, at least I can vent here. Thank you.

Lalove- I'm going to have to second what Ronna said- no guarantees that pain will improve with the implant gone.  The hardest part through all this is trying to figure out what exactly is causing the pain because there can be so many causes.  I also swapped my implants for smaller ones and did get some relief but still have lots of issues.  I have to wonder if it's the alteration to the pec muscles that cause this ongoing pain.  Seems to me if a muscle is used in a way it's not intended, as in stretched and then used for supporting our implants, your body is going to protest.  I also read that once the pec is stretched it becomes thinner and there is no way to repair that.  I just think the whole TE thing is so barbaric.  Sorry you are having so much pain.  The shoulder thing might be improved with some PT.  After MX we have a tendency to become "hunched" and this can definitely cause shoulder pain.   They can also show you some stretches to loosen up the pecs that might help.

Just read this article that said these are all the reasons we could be in pain after mastectomy.  No wonder we're having a hard time figuring it out!

Radiculopathy

Leptomeningeal disease

Plexopathy

Neuropathy

Polyneuropathy

Mononeuropathy multiplex

Mononeuropathy

Median mononeuropathy (carpel tunnel syndrome)

Ulnar neuropathy

Radial neuropathy

Myopathy

Tendonitis

Rotator cuff

Bicipital

Adhesive capsulitis

Epicondylitis

de Quervain’s tenosynovitis

Postmastectomy syndrome

Intercostobrachial neuralgia

Axillary pain (postsurgical)

Edema

Postoperative swelling

Cording (thrombophlebitis)

Lymphedema

Deep venous thrombosis

Complex regional pain syndrome

Cellulitis

Arthritis

Metastases

http://www.med.nyu.edu/pmr/residency/resources/96-UE%20pain%20in%20breast%20CA.pdf 

I was watching a program where they talked about protecting nerves during surgery.  I was surprised as I just assumed nerves had to be cut when making incisions.  So I started researching and found about about a company, called AxoGen, Inc, that makes products that help protect, reconstruct and regenerate nerves.  They have something called the AxoGuard Nerve Protector which can be used to protect nerve tissue, or to wrap a partially severed nerve, during surgery.  It says it protects the nerves and "minimizes potential for soft issue attachments and nerve entrapment by physically isolating the nerve during the healing process" and reduces the risk of neuromas.  Has anyone heard of their surgeon using this?  It seems if it works as it promises it has the potential to at least prevent some of the issues we may be dealing with.

If you ladies want to ask some questions about removing implants and repairing the pec muscle and if will alleviate pain, might I suggest a website

http://members.boardhost.com/plastic/

You can post a question and it is personally answered by my surgeon... he answers ALL sorts of questions and you don't have to be his patient to ask.

tenaj- it depends on how much fat they graft but it can definitely cover up the rippling. My PS swapped out my 375 implants for 225 and then filled the space with fat so it was a nice thick layer. It completely eliminated all the rippling and mine was really bad. If they just inject the fat over the implant a lot of it can end up getting reabsorped so it sometimes takes a few rounds of grafting but not always. Check out the thread called "Has anyone had micro fat grafting?" for more info.