Still Uncomfortable with Implants

I'm reading with interest the link between silicone implants and cognitive issues.  I had no chemo or rads, and still somewhat recovering from a 5 hour surgery in November.  I truly thought that I could move on.  Yeah, right. 

It's embarassing how forgetful I am - I can say something and a few seconds later not remember what I said.   And walk into a room for something, can't figure out why I'm there.  Thank goodness I don't have a full-time job right now. 

Does this get any better? 

Kate: sorry you got upset today. I did re-read the article.  I believe this article pertains to the gals who just want breast enhancement, what about us who had no choice but to receive implants. It all stinks. I am also patiently waiting to be tatooed. Scars have to still heal, my last surgery was in August. I am not a good healer.  He says soon. Soon to this and soon to that. Oh well.

So now I will wait with anxiety for the 6 weeks to pass. I will go to gym, continue to try and soften the tissue and count the days. Thanks to everyone who continues to listen to my rants.

Hugs,

Sorry last posting was on page 17, I tried to read , but couldn't. So, glad Kate as become the monitor of this thread , as I have said before she has much to offer. She is the Whippetmom of this thread. Kate will get that and know the honor I give her.

One of the things I didn't say , that during my recovery, my DH died Aug  20th, 2010. He almost rolled out of bed that night. I was not going to let that happen. I caught him and pushed back.He was very heavy. I don't know if it changed what happened to the foobs. I do know How my foobs were changed. Whether or not it lengthened the time of acclimation ---don't know. What I can say is since July 09 till now  at supposed max fill of 850cc , I feel like I have heavy foobs. Pain is there only when I do certain types of activities. I still get swelling in armpits, Left breast swelling. And now am developing scar tissue on inner aspect of left arm where the drain was. I'm a nurse, At least for the next 2 months. Scar tissue is forming , it needs to be broken up.  The problem is the tx could make it better or it could make it worse. Cluck-it. What to do? Twin had first a mx developed LE of arm, that extended to mid-line torso, to neck, to waist. In a medical wasteland for treatment. Now has affected liver. Hateful.  I stupidly pulled some weeds the other night . So, far okay, but worrying. Won't do it again.

 Anyone that denies Stem cell research ---consider that we could develop stem cells that would prevent LE. Yes, my breast have been taken. BUT LE is the life offender that it is out of control.

joy- I do think a lot of my cognitive issues were stemming from the anesthesia and it has definitely gotten better.  I think you're still fairly close to your surgery date so that still could be a factor.  And if there were any surgeries prior to that it gets added to the equation.  I do have a lot of sympathy for those who are working full time.  I don't know how they do it after surgery!

Ronna- Even though the article was talking about cosmetic patients I still found it completely insulting.  I feel like for too long society has made us feel we are the sum of our breasts.  Then when making so many women feel inadequate about it they offer us a solution that, after all this research, does not seem particularly safe to me.  And then they don't seem that concerned about it when a women starts having issues.  Instead they label her as having deep seated psychological problems.  I think there are some women out there that may have those (like the ones that have augmentation to go from DD to F!  Yikes!) but I think most choose modestly only wanting to appear "normal" or what society deems normal.  So, in a lot of ways, their choice though voluntary, is the same reasoning we have all chosen implants.  It's our attempt at "normalcy" which is not a psychological problem.  Not sure if I'm making sense but that's why the article struck a nerve with me.

SAS- I am honored by your words.  Thank you.  It sounds like the issues you are having are very similar to what I am.  I'm assuming you've been dx with LE?  I'm seeing a LE therapist in a few weeks so get a definitive dx regarding that.  Just curious- do you wear a compression sleeve when you do strenuous activities?  I do find my arm hurts more after things like that so am hoping they measure me for a sleeve.  I would definitely see if you can do some PT for the scar tissue.  I'm planning on doing that as well.  If not, check out that site I posted about, stayingabreast.com, as they've got some exercises listed on there that might help.  (((hugs))) 

joy- Thanks for the LE info and, you're right, it should all be mandatory.  Wonder if PT was how many of us would still be having as many issues with the implants.

I've been on the Mentor website today and have learned some interesting information.

Mentor is touting that it is conducting a 10 Year Core Study regarding the safety of implants.  Yet, they have only 1,007 patients enrolled despite there being 10 MILLION implants in use worldwide.  They are currently studying long term local complications, connective tissue disease, neurological disease, offspring issues, reproductive issues, lacation issues, cancer, suicide, mammography issues, MRI compliance and results.

The current rate of revision for women receiving implants for reconstruction is 27%.  (Can you imagine if an automobile manufacturer had 27% of its customers needing to trade in their cars due to problems?  They would be out of business!)  Of the 27%, 8.3% developed CC and 2.2% was due to pain.  

Current studies indicate larger sized implants (which they list as larger than 350 cc's- not that large) may increase the risk of developing complications such as implant extrusion, hematoma, infection, palpable implant folds, visible skin wrinkling which require surgical intervention to correct.

The part that really made my day was for recon and revision of recon Mentor only recommends 3 surgical approaches to placement- periareolar, inframmary or using MX scar.  My PS opted to use the auxillary (armpit) even though it states right on Mentor's site that using it makes insertion more difficult therefore increasing the risk of damage to the implant.  (Not to mention that I'm positive that this has given me LE.)  Surgeons were advised to use the method best for the patient consistent with their product insertion data sheet.  (Again, specifically says not to use auxillary in recon/revision recon.)  Wait- it gets better.  Mentor offers financial assistance of up to $1200, for 10 years, if you need to remove or replace your implants for OR, anesthesia and surgical charges.  But in order to qualify you have to have your implants placed in accordance with the Mentor package insert.  So I'm interpreting this to mean that not only has my PS given me lifelong LE but he has now voided my warranty!?!  (BTW, warranty is for rupture but doesn't cover CC- so wrong!)

So just had to pass some of this along.  Let me know if I'm being too bitchy witchy about all this. 

Kate- Had to read the Mentor guidelines after your post. I am a bit confused about your stating that Mentor specifically advises NOT to use the axillary approach. While they do warn that this approach is riskier in terms of implant damage, the only direct statement I found was this one for periumbilical: "Do not use the periumbilical approach to place the implant". Mentor shows a chart with the various insertion sites along with incision measurements used in their study. This chart does NOT include the axillary incision for reconstruction or revision reconstruction. Other direct instructions I found were:

"Incision Site Selection

1 The periareolar site is typically more concealed, but it is associated with a higher likelihood of difficulties in successfully breast feeding as compared to other incision sites.

2 A periareolar incision may result in changes in nipple sensation.

3 The inframammary incision is generally less concealed than the periareolar, but it is associated with less breast feeding difficulty than the periareolar incision site.

4 The axillary incision is less concealed than the periareolar site.

5 The periumbilical approach has not been studied in Mentor's Core Study and should not be used for a wide variety of reasons, including potential damage to the implant shell"

I'm sure your warranty is intact, however, like you said, it only comes into play with implant rupture.

joyh - "CC" is capsular contracture. One of the most common complications with breast implants. Here is the wikipedia definition: “Capsular contracture is an abnormal response of the immune system to foreign materials in the human body. Medically, it occurs mostly in context of the complications from breast implants and artificial joint prosthetics.” And here is this additional tidbit of good news: “Moreover, because capsular contracture is a consequence of the immune system defending the patient’s bodily integrity and health, it might reoccur, even after the requisite corrective surgery for the initial incidence.” CC is graded on something called the Baker scale. It ranges from 1 to 4.

This is direct from BCO regarding how to avoid lymphedema.  The first thing it says is don't permit the skin of your at-risk arm to be pierced for any reason.  So I'm guessing putting axillary incisions in it would be a definite no-no.  I didn't know this at the time but I would think a PS, specializing in breast reconstruction, should have.

Don't permit the skin of your at-risk arm to be pierced for any reason: injections, drawing blood, or vaccinations. (Don't trust anyone, not even your personal physician, to remember which is your at-risk arm.) If you've had breast cancer in both breasts along with underarm lymph node dissections, blood should be drawn from another part of your body. If blood must be drawn from your arm, use your non-dominant arm (your left arm, if you are right-handed; your right arm, if you are left-handed). If one side had no lymph node dissection, use the arm on that side, regardless of whether it's your dominant arm.

Kate33 - Thanks for all of the Mentor information.

I am here to tell you that they do everything not to honor the warranty. My saline implant developed a slow leak - blammed it on surgical procedure which is ridiculous as the surgical procedure - removal to repair muscle and make sling with alloderm. It was a tiny hole that started leaking at least 3-4 months post surgical procedure. The only thing we can figure is that there was a surgical knot that sort of wore on the site and rubbed small hole. Mentor said there were "striations" around hole. Of course I did fall and slide on implant side 2 months post alloderm repair surgery. Since the implant was exchanged in PS office surgical suite and I came to from anesthesia just as he was removing it and saw the implant and the minute leak site first hand. We were upset with Mentor for not honoring warranty and then I had to appeal to insurance company to get it covered through insurance. This happened just over a year from original placement and then waited 3 months to replace it due to other life happenings. My opinion of Mentor and their warranty is that it is worthless.

BTW my implants were placed through the original IMF incisions.

Kate, I am starting to read the Mentor literature. Comes up as 52 pages so I started and will continue. Have to go out now.

I guess I am lost on something. Is Mentor the brand name of an implant??? I am all mixed up.

Sorry if I am not keeping up.

Hugs,

I had written a response for this thread a few days ago but never posted since I got caught up in a lymphedema flare and had a little meltdown. On the upside now and feeling much better in every way. Anyway, here is what I had wanted to share.

Not long before this thread began, there was another thread, "Can I Remove My Implants", and someone posted the article linked below. It mentions that the FDA approved silicone implants in 2006 but it was conditional on Allergan and Mentor conducting long-term studies on their silicone implants. Article starts out talking about augmentation (statistic in title is related to augmentation), but then gives stats for breast recon that are quite interesting. Basically, the studies report that for reconstruction, 1 in 2 patients will have their implants removed within 10 yrs.  One in two patients means 50%. There are a number of reasons, the most common are capsular contracture, revision surgery, and implant removal. 

The FDA recognized that the implant companies do not have adequate long-term info on their implants. To improve gathering of long-term data, patients are told to contact Medwatch (they give phone number) and implant manufacturer to report serious side effects. Patients are encouraged to continue routine followups with PS and tell them of unusual symptoms. 

It would seem to me that followups with original PS are supposed to help implant co's get more accurate data, but if our PS's say we are unique or minimize our pain, are they reporting our symptoms to implant co? This is why I say bypass PS and implant co and report any complaints of pain, revision surgery or removal of implants to Medwatch. You are helping the FDA evaluate the safety of silicone implants and any side effects they may cause. 

It's not mentioned in this article, but the FDA site stats say if you had capsular contracture with first implants, the likelihood of developing CC again with new implants is even higher.

http://www.medicalnewstoday.com/articles/229469.php 

In case you are interested in other thread that discussed implant pain, here it is.

http://community.breastcancer.org/forum/82/topic/759948?page=1 

P.S. - Kate, you are not being all bitchy-witchy. I sometimes feel that way, but the reconstruction path isn't always bright and cheery. Just reporting the facts for others that come after us. I wish everyone could experience the reconstruction ideal that was presented to us as we were dealing with the diagnosis of breast cancer. No one deserves to stay on this "journey" any longer than necessary.

Dance - The FDA site is a wealth of info when it comes to implants. It was the best resource for me as far as accurate data when I was deciding whether to deconstruct or have implants replaced. The implant labeling for patients and the labeling for doctors/surgeons is quite detailed. I had capsular contracture in both sides, and given that I also have truncal lymphedema, I wanted to avoid unnecessary surgeries. Each surgery disturbs the area, creates more scar tissue, and is a risk for LE exacerbation. It was a good decision for me, as I didn't know that my right pectoral was also severely damaged. A new implant would have delayed the inevitable. I really wish everything had worked out, but such is life. To be alive and pain free is the ultimate gift in the end.

So true Tina, so true. 

Lee- Sorry, but I don't understand why you keep trying to defend Dr. Khouri's axillary incision approach especially since he didn't do yours this way.  I would think as a personal trainer you would understand the risks and long term ramifications of LE.  Recon is hard enough without adding to the complications.

Delilah- That's disheartening that Mentor looks for ways to skirt honoring its warranties.  Sorry you had to fight for what is so obvious should have been covered by someone.

Ronna- Yes, Mentor is one brand of implants.  I had that sticking issue, too, between the implant, arm and armpit.  What finally fixed it was doing fat grafting over the top of the implant which caused them to be the same skin temperature as the rest of my body.  I think it was the coldness of the implants that was causing it to stick.  Not sure if you have the same thing (coldness) but that might be one reason. 

Kate - I've explained this several times.  When using the original MX scars, fat can't be injected under the incision site which leads to an indentation along the scar line.  He used the MX scar for my revision and that is precisely what happened.  I had one additional procedure to correct this.  Also, LE can occur at any time and for a multitude of reasons.  If you end up being diagnosed with LE, I doubt anyone could say with certainty what caused it.  Also like you've already said, another contributing factor in your discomfort could be your fibromyalgia. 

You post from your experience, I post from mine.  Everyone has to make their own decision on what they prefer but at least through case history we know the advantages and disadvantages from either approach.