Still Uncomfortable with Implants

Mlp - yes, I asked my MFR therapist for a couple of therapists in your area. As I recall, he actually knew who these therapists were and was comfortable referring, which must speak to the quality of their care. Often a good sign when more than one person recommends same therapist, especially someone who has used for treatment.




Interesting article. I think I read that when I was looking into alloderm. Article is from 2009, and I'm sure there will be further info in the next few years as there is always a delay between when data is accumulated in study and articles published.




Ladies, I cannot urge you enough to report any problems with your implants that require additional surgeries, revisions, change of implant, infections, explantation, etc. to the FDA through Medwatch. They take small numbers of problems seriously, as one adverse event report is usually representative of a greater number of problems that have not been reported. Both Mentor and Allergan are tracking their own long-term implant data, which I cannot believe they are allowed to do. Use of alloderm in the reconstruction process would be relevant data. Doctors must report implant issues to the implant companies, but there is no guarantee they forward all info to FDA. Both companies claim lack of info is due to patient moving and having surgery elsewhere, etc. Yeah, it's the patient's fault again. Sheesh. I say, report adverse events directly to Medwatch. You can submit online or send for paper form if you need more space to write details. I believe accurate data should be available to women when they make choices about reconstruction.




http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm

It just blows my mind that my BS claims in his 35 yrs as a surgeon he has never seen this and my PS says the same thing!! I think this is BULL!! I go to a PS less than 100 miles down the road and they see it several times a year. My PS wants to do fat grafting because he thinks it could help. My question is if you don't know what's causing my pain and you've never had a patient with this issue, how do you know how to fix it?? How does he know it's NOT alloderm?? I think we all need to find a surgeon who has had bricks taped w/ duct tape (somewhere) to understand that this pain and discomfort is real!!

mlp- I have to wonder if it's the complete lack of follow up that these surgeons are so completely clueless.  I saw my first PS a month after exchange (8/10) and have never heard from her or her office again.  Same goes for my 2nd PS who did my revison/FG.  I saw him 5 days after surgery and never again.  How the hell can they say no one ever has any problems if they never check back and see if we do?  There definitely needs to be some long term research done on this.

So I was googling physical therapy after breast cancer and came across this interesting article from a women named Annie Toglia who was a medical exercise specialist who talked about the need for immediate PT following BC surgery.  She has a book out, called "Staying Abreast: Rehabilitation Exercises for Breast Cancer Surgery",  but it's no longer available on Amazon.  I was researching the book and discovered she passed away from complications from BC.   So very sad.  Her family said they are going to continue her program.  You can purchase her book at stayingabreast.com and there are also links to different exercises on there.

http://abcnews.go.com/GMA/HealthyWoman/story?id=125239&singlePage=true#.T1PY8hwvg3V 

http://www.stayingabreast.com/site/index.htm 

Kate, I too am amazed that PT (by a BC specialist) is not routinely ordered after BC surgery.  Only one facility really closely examined my shoulder range of motion (I have had several 2nd opinions for other issues).   Even then they did not look at it to the degree a PT would have (if so, they would have realized I had lots of pec tightness as well as mild cording that was still resolving...so thankful I know how to treat myself).   The problem is a patient has to get to the point of significant limitation and pain before they express this to the doc and then (hopefully) a referral is made.  It's such a shame b/c early screening and referral would result in such a vast improvement in recovery.  It is much easier to prevent soft tissue tightness and scar restriction than it is to treat it afterwards (not that it can't be treated afterwards, but prevention is a MUCH easier and quicker road, not to mention it spares the patient months or even years of pain). 

Ah well, it is an imperfect medical system.  

I was having lots of PT prior to BC for neck/shoulder pain.  Also,  my gyn. was giving me referals for pelvic floor PT (which could really be beneficial for a lot of bc survivors facing vaginal issues).  And then after my reconsruction, my PS said he would write referals for as much PT as I wanted.  I feel very fortunate in that regard.  

Now, don't freak out when I tell you this.  When my PT first suggested this work several years ago, I was very skeptical. I thought no way.  But I as in a lot of pain and I had a lot of trust in my therapist.   I asked her for some info to read more about it and talked to my gyn.  I was having a lot of hip pain at the time and had been going to PT for months without getting enough relief.  When I finally agreed to the treatment, it was such a huge help.  

Pelvic Floor therapy is internal manipulation of the internal muscles and fascia of the pelvic region. Too tight muscles can cause pain during intercourse and clitoral pain, among other things.  Too loose and you can have organ prolapse....bladder, uterus, rectum, incontinence, clitoral pain..... Men can also have pelvic floor work, but through the rectum to aid incontinence from prostate issues. 

So many women have pelvic floor issues after taking tamox., AI's or have gone through menopause.  Pelvic floor PT could help by reducing some of the tightness at the opening and internally and by encouraging blood flow to the area.  It is important to find someone who has been trained in this and is someone you feel very comfortable with.  

Kate - The FDA has Mentor and Allergan doing long-term studies that track implant problems. I'm not anti-implant, but I do believe women should know what the real risks are for various types of recon. As we all seem to have expressed, unless we make follow up appts with our PS's, they assume all is well. Unfortunately, when we have pain and do ask to see PS because we don't understand what we are experiencing, we all seem to get the standard "I've never had a patient with this problem before" response. My PS never wanted to acknowledge capsular contracture, yet was prescribing Accolate off-label (similar to Singulair). He offered a few types of surgery eventually, but he never wanted to totally replace implant or do capsulectomy. Only after I got 2nd op did he acknowledge CC. However he still only wanted to do alloderm patch on capsule - which he had never done before but had discussed with surgeon at conference. I had the same thought about not being his guinea pig. My PS would have been glad to ignore me if I wasn't persistent. His nurse was very protective of him and great at making you feel like there was something odd about you, like you're a hysterical female patient. I went from being very calm and focused about what I needed to do to survive BC, to becoming a physical wreck during expansion and then six months after exchange when implant poked through muscle and CC was developing.




As far as my original PS knows, I still have my implants, so he would be an example of a doctor with no info on a patient for the long-term implant studies. I had implants removed by different PS, and I assume she reported to Mentor, but I had no way of knowing whether that info was forwarded to the FDA. That's why I reported my adverse event to the FDA through Medwatch. Severe pain as reason for implant exchange or explantation/removal needs to be reported. Even if pain remains after deconstruction, the data is still relevant, which is why I think the info about alloderm is important, too.




I don't mean to sound crabby or negative. As I have said, my concern is about women having accurate data when they make a choice about recon. And, really, who stands to benefit if all negative data isn't forwarded to the FDA? Well, both the PS's and implant co's. The PS gets to keep his gleaming track record of perfect surgeries, and the implant co's get to keep selling implants since there seem to be few problems associated with them. Same with alloderm. It's convenient that they all get to continue to make a lot of money. And who really pays for all that? We do. I refused to shut up and go away. I chose to make my story known.




I think it's time to change my avatar to something more pleasant . . I'm not always on a soapbox yelling! LOL!

Tina- I love your new avatar!  It's very happy!  You're right about reporting the implant problems.  I don't know why I didn't think to do that.  I never got back to my first PS because I was so upset with her but I should have.  The funny thing is they called a few months back asking if they could use my photos for some magazine article she was going to be featured in.  I told them it might be a little misleading considering I've had a revision.  The girl on the phone wasn't sure quite what to say.  I don't know if she passed it on to my PS but, if she had, you'd think the PS would have called to find out about it.  

I am very excited.  I was able to get an appointment with the physical therapist dancetrancer told me about.  (Thank you, dancetrancer!)  I see her in 2 weeks instead of 6 like the other place told me.  I hope she can help with some of my issues, anyway! 

That is great Kate.  I hope she can bring you some relief.

Ronna- At least your PS admitted to one!  I'm told over and over again that I am the only one.  Gee, I feel so special.  

I know I have concentration issues--due to having to endure continuous pain--and discomfort.

Could be the platinum as well.  Hoping for an improvement after my implants are totally removed.  Eileen

Thank you Kate33 for posting the study site for implants.

I have saline and the concentration problems with the platinum levels seem to be centered on silicone implants. Doesn't say if they use the platinum in the manufacture of just the gel or is it in the shell as well.

My concentration is really bad since all of this happened and I didn't have chemo, rads or need for the nasty estrogen inhibiting drugs that go along with it. I blame mine on menopause and my boss.

If I weren't concentrating so hard on not making mistakes, I probably wouldn't make the silly ones I have and then get written up for each and everyone of them. Others do worse things and make more mistakes, but due to my surgeries and my boss' attitude towards them I am put under a microscope. If I didn't have 20+ years invested and benefits that go along with that time frame, I would definitely be looking for something else. 

I am going to look into the FDA monitoring site and report my leaking saline implant which I had exchanged last year. Mentor claimed it was a surgical stitch or something that rubbed a hole in it so they didn't cover it. Forturnatley after appeal process with insurance, it was covered.

I found something interesting.  According to the Americans with Disabilities Act you can be considered disabled if you are depressed as a result of cancer.  Hmm, wonder if you can be disabled from being depressed you have implants?  

Ronna- Your post upsets me so much!  Don't these doctors get that we wait months for these appointments sometimes, hoping for answers, and they just shove us out the door and say see you in 6 months.  What is going to change in 6 months?  How about help me now?  Yes, I've gotten the "You look great" thing, too.  I want to scream- "I'm not here because of how I look.  I'm here because of how they feel!"  Don't ya just want to shove some silicone plastic crap in their ***** and tell them to walk around with that and see how they feel?  Sorry- I've been online too much today and it is getting to me all the crap we are subjected to sometimes.  

I am so ready to do more fat grafting and try and get rid of these implants all together.  Not sure, yet, how I will swing it but if the PT doesn't help I'm going to figure something out. 

OK, I really need to get off the internet- lol!

http://www.mombu.com/medicine/human-head/t-pattys-experience-with-saline-breast-implants-hematoma-diet-depression-anxiety-down-7276282.html