Still Uncomfortable with Implants

Kate - Fat grafting for breast reconstruction (and augmentation for that matter) is still a relatively new procedure.  With Dr. Khouri's vast experience doing this, he continually tweaks the procedure based on the results and feedback from his patients.  The change in incision site is not something he just arbitrary decided to do.  With his background you can rest assured that he is aware of LE - his own assistant has LE.  The long term well being of his patients is always his top priority and he will continue to adjust and enhance this procedure if it benefits his patients.  I've met a lot of women both on-line as well as in person and no one has experienced the issues you present.  THAT is why I suggested that fibromyalgia may be a contributing factor in your discomfort.  Of course it doesn't cause LE,  but in the posts I saw, you hadn't received a clear cut diagnosis.  You had, however, suggested that your fibromyalgia might be causing additional issues.  Every surgery will up our chances of complications, there will always be risks and potential trade offs.  This is especially true of newer procedures.  My position is simply that not all patients experience what you describe and while it's unfortunate that you do have lingering issues, so many others are incredibly happy.  The axillary incisions I have seen had healed very nicely - again, yours may be the exception.  My correction involved more anesthesia, more lipo and presented risk yet again.  I choose to take that risk, but if most women recover well with axillary incisions, there is no additional procedure.  Those of us who go this route are pioneers.  Some of us breeze through with wonderful results - some will not, but let's not place the blame on the procedure or the doctor(s) who perform it.  

I've just worked my way through all the posts on this discussion board and have found it to be a wonderful resource.  I was diagnosed with DCIS on December 20, 2010 (Merry Xmas) and had a mastectomy in May.  I decided to go with breast reconstruction immediately (implants) and had the exchange surgery in December 2011.  I'm in constant discomfort, which is not getting any better, and am coming to the conclusion that breast reconstruction is not for me.  This board has provided me with valuable information so that when I see my PS in early April, I can have an intelligent discussion with him about next steps.  It's a shame that we are not provided with more information at the time that we are being asked to make big decisions.  It's difficult enough making decisions like this at the best of times, but at a time when you are stressed with a cancer diagnosis, it's a lot to ask.

In the spirit of providing more information, I'll keep you posted about my progress.  I live in Toronto, so I've got the advantage of a public health system and the resources of a major urban centre.  My PS is widely admired for both his skill and his empathy, so I'm not worried about push back from that quarter.

I cannot say enough how much I admire the courage of all the women on this board.  

annettek - Thanks for your input!  I still have implants.  Although I wish I could have had fat grafting right from the start and avoided them, I am happy with where I am.  I agree with you that considering what is being done to our body, there has to be discomfort and pain.  Do mine feel like my originals?  Of course not, but they feel as close to normal as I could ever have hoped and they look better than my original set (despite the scars).  We do have to trust our surgeons at a certain point and believe that they are acting in our best interest.  If we can't have that trust than we have to find one that we can give that trust to.  I love your mindset about looking for the positives - I like to do that too.  I could have NEVER gone bra-less before....

It IS important to remember that there are many happy reconstruction patients.  Some have detours along the way, but we all do the best we can and looking for a silver lining definately helps.

PS - Like you, I'm not a "spring chicken" either, but feel I'm in the best shape of my life.  This experience has motivated me to exercise even harder, eat healthier and maintain a positive attitude.  Congrats to you!!! 

I think what most of us struggle with on this thread is that surgeons are not explaining risks to us, giving us all the information we needed to make an informed decision, not delivering what they promised to us and then are not validating our concerns when issues arise.  We are made to feel as though we are the only patient this has ever happened to or that we're an hysterical female.  And we come to this thread to have our feelings validated and understoood- not questioned.

Lee- This is the last time I will comment on this with you.  My issue with our PS is I did not agree to be experimented upon so he could "tweak" (your words) his procedure.  I flew across the country and had a lengthy consult with him where he agreed he would use my original incisions for his procedure.  That is what I signed up for.  Not once did he say this was not an option.  If he had I would have decided to go elsewhere as was my right.  You can't tell a patient one thing and then decide right before surgery to do something else.  It's unethical.  And you shouldn't be trying something new on a patient without their knowledge that you're trying something that has not been done before.

Again, this goes to the spirit of this thread.  Those of us who post here are extremely frustrated with this part of the BC journey.  It is made so much more difficult that it needs to be.  All we ask is that we are treated like adults with respect.  That we are not experimented on unless we agree to be so because we're willing to risk it.  That we are given all the information so we can make informed decisions regarding our own bodies.   

kate   Sending hugs your way.  How frustrating to think that surgery will be one thing, and then to wake up and find out that something else was done.  

What I have found is that many surgeons are woefully ignorant of lymphedema.  Both my BS and PS had little knowledge of lymphedema, and I was told that with "only 4 nodes" removed I had very little chance of getting lymphedema.  Well, 4 months later and I'm dealing with lymphedema.  What is frustrating is that if more women (and men) knew of lymphedema risks going into revision surgery, they might make different decisions.   And most importantly, if surgeons knew about lymphedema risks, might perform surgery in a way that would minimize further lymphema risk.  

I hope that you find some relief with a qualified PT or lymphedema specialist.   

Stanzie, can I please ask what are "fat pillows".

Kate, please feel better. I believe I have Allergen implants (Natrelle)  and have just started to do my reading. Also dealing with severe leg and back problems which is also making me more crazy than usual.Hugs,

Kate - I wouldn't be compelled to post if you weren't continually bashing a procedure and the surgeon who pioneered it. It holds such promise and has helped countless women that the thought of someone reading this thread and dismissing what might be the answer to their prayers is unbearable. I've met too many women whose lives have been transformed and who can't believe their good fortune of being pain free with soft, warm and beautiful breasts. It's because of these women, as well as my own experience, that I will always defend the procedure and the surgeon. With revisions, the surgeon really doesn't quite know what to expect and how complex the repair may be - I think Beacher is a good example of that. It is also critical that patients report back to the surgeon so they are aware not just the short term but also the long term results. This is the only way procedures can be refined and improved. The only photos I've seen of your results were the ones you posted shortly after your revision which showed an amazing difference to your "before." Perhaps you can update them to show your present situation. While this may not be the solution to every woman's reconstruction nightmare, it certainly has been for many. This is an active thread and as such will be read by many who are newly diagnosed and trying to decide with reconstruction route to take. Hopefully my posts can dispel some of the fear and provide encouragement. The bottom line is that the vast majority of revision patients have experienced very good results and are long gone from this board. Your experience shouldn't distract from that fact

Stanzie

I can't believe that this wouldn't be considered f/u to the MX and reconstruction so that surgery might pay to fix it.  Of course I don't know all about insurance and the ins and outs. 

Lee -

I really don't want to get in the middle of your discussion with Kate but this thread is called Still Uncomfortable with Implants - if everything was wonderful most of us wouldn't be reading on this thread. Kate is only saying what her experience was and why she thinks she is having the problems and pain she now experiences. I was curious and read back a ways and on pg. 14 Kate clearly says how much he loves the fat grafting and encourages it. The problem is being told one thing and then in surgery something else happening. Now we all know in surgery things can change, but it doesn't sound like she has answers as to why a different approach was taken. And if it was experimental then that certainly is not right and should be exposed.

One of the main reasons I come to BCO is to learn about new procedures and also to learn about problems others have run into. In this internet age we all search and try and find answers and I think most of us have all found we really were not fully informed going into surgery.If I could go back with the knowledge I have now - I would do things very differently, asked a thousand more questions and really talked to women who experienced the operation I was going to have. Yes some may sail through and all is well but to me it is the ones who had problems - they are the ones I want to know about so I can discuss those possibilites with my doctor.  If some of the newly diagnosed can learn from our experiences then to me that is a good thing. 

Kate: you mention the "sticking thing in your armpit..."...which I have on one side (double MX immediate reconstruct with TE alone on Dec 8, 2011 and still getting fills). So do you, or anyone else, know the cause? For me the only big difference btw the two sides is the one with this sticking had radiation 5 years ago (both sides have sentinel lymph nodes removed). My ps said whe he goes in with the exchange that he will unstick this area and has also mentioned fat grafting. Any advice or insight??

Amen Stanzie. I agree completely!!!!

Kate33, Keep posting. I appreciate your honesty and candor. We need to hear all sides. If Kate doesnt want to post her pictures, that should be respected.

I despise my axillary incisions. If I had more information prior to Khouri doing them, I never would have proceeded with them. Anyone proceeding with them needs to think twice and get multiple opinions.

Let me make myself equally clear:

1 - Anyone considering implants will look at this thread  In addition anyone doing internet searches on fat grafting or Dr. Khouri will be led here due to the frequent mention within the thread.  So it is extremely important that those women aren't discouraged from the procedure or from any one surgeon.

2 - I'm not on any medical professional's payroll.  I have gone down to Miami to meet ladies who were anxious and nervous.  I've rearranged my work schedule, drove the 521 miles simply to reassure someone who was in need.  At my own expense, without Dr. Khouri and his staff even knowing about it.  I've spent hours on the phone with ladies who needed answers, comfort and reassurance.  Again, my time, my expense.  So for anyone to imply that I'm being paid by Dr. Khouri or ANYONE is an insult.  But you know what?  When those same ladies call me back after their procedure, in tears this time because they are so unbelievably happy and grateful, it makes it all worthwhile. 

3 - We are not doctors, so it behooves us to be careful in what we post since others will take it as fact.  As far as axillary incisions go, I urge everyone to do an internet search to learn more.  This site http://www.dradrianlo.com/breast-augmentation/breast-augmentation-facts.php has some very straight forward information.  Some quotes:  The incision is small, about 1 inch, and well hidden in the depth of the armpit. When the incision heals, it is barely noticeable...The pocket for the placement of the implant underneath the muscle is entered very easily through the armpit incision  .....The structures of the armpit including the nerves and the lymph nodes are not affected. .... So, how can anyone state unequivocally that the axillary incision causes LE? 

4 - All patients should report back to their doctor on any concerns or the possibility of complications.  I haven't read that this was done in this instance where the axillary incisions are being called into question and for the life of me, this is something I can't understand.  

5- Again...we are NOT doctors and while we have to be our own best advocate in health care, I don't believe that means steering potential pataints away from certain procedures or providers.  This is a grave disservice to those who would benefit greatly.

6 - I am no expert, I've had several fat grafting procedures and I've been blessed to get to know others who have had them.  I post my photos so others can benefit - not to make a point.

By the way Stanzie - if you still have pain your insurance should pay for a touch-up or full revision, whatever it takes to resolve it.  Also, to attain symmetry they are required to pay.  Call your insurance and have your surgeon's office fight for you with them as well.  Good luck - sometimes we have to fight for the coverage that we are entitled to.

Problem is, Kate, you're not concerned enough with Dr. Khouri's reputation.

I've read the last four pages of posts and am not sure if this thread is a fit, but it was recommended to me, so I want to see if I am alone or others are experiencing something similar. Reading this site was the first time I heard about post pain.



I had a NSBMX in June 2010. Switched PS and had a revision surgery in Sept to change TEs. The new ones were more of a half moon shaped--not much in the upper pole. Lots of scar tissue was removed under my armpits. Exchange surgery was Nov 16. Lots of swelling and wore a band for over three weeks. Now my foobs are painful. By the end of the day I really hurt. A bra hurts after it has rubbed all day on the numb ares. I switch bras and sleep in my mastectomy camisole. My right breast is still pretty swollen and today the left one was. Starting PT to help with shoulder pain.



PS said some women take more time to heal and will see me in May. Does anyone else hurt? Implants are 475cc and 500cc. TEs were at 425ccs. PS said no cc, so why so sore to the touch? I am getting tired of the pain. Any suggestions or ideas. This is the first thread where I've asked. I'm scared I will learn this is something I will need to live with, but I want to hear all this could be.



Thanks for this safe place to ask.