Still Uncomfortable with Implants

dancetrancer- I just saw a tv segment on antidepressants.  The scientist studying them said that companies can do 20 different clinical trials to test the safety of a drug or device.  If 18 of them don't support their findings, and 2 do, they can choose just to publish the 2 and disregard the rest!  He thought this was appalling.  (I do, too!)  So I guess the same thing could have happened with the company that makes Alloderm

Ronna- I finally watched the 20/20 episode on plastic surgery.  It was a lot of fluff and hype about procedures to make us look younger.  (The most disturbing thing was a PS who did a boob job on his 18 year old daughter for her birthday.  Gross!)  One PS was talking about covering the implants with Strattice which is made from pig skin.  There seem to be mixed reviews as to whether or not it is any better than Alloderm.  I did find some sites where doctors in the UK were using Srattice as a way to go straight to implant- no TE's required.  Not sure why it would be any different than Alloderm, though. 

Oh Kate - I SAW that!  It was on 60 Minutes, right?  So unbelievably WRONG! And so unbelievably possible.  That is so scary.   And did you see the story on the researcher from Duke who falsified his data on a cancer vaccine?  People signed up for that trial based upon falsified data.  OMG, no wonder it is hard for people to trust the medical profession (I'm in it, and I trust it even less b/c of it, sadly.)

I've really been researching all the pain issues and my head is spinning.  It seems we can have discomfort from capsular contracture, post mastectomy pain syndrome, LE of the arms, chest or trunk, pectoral muscle issues, auto immune issues, Alloderm issues, scar tissue formation, etc, etc, etc.  How the heck do we fix our pain when we can't even figure out what is causing it?  The past few weeks the pressure on my chest feels like it is getting worse.  I'm pretty sure I don't have CC but don't know about the rest.  Am feeling very depressed about it all.  

Kate, I totally agree, and I'm sorry your discomfort is increasing. All the reasons for pain are mind boggling. By the way, you forgot to include implant rupture in your list. LOL! I have to run out for an appt right now, but I will be back later to tell you about the various doctors and therapists I found helpful in determining my problems. In my case, I had three of the issues you mention. I guess I was just very "lucky", but with persistence I was able to determine what was causing what pain.

Why don't they at least give us more realistic ideas about what we are getting into. I don't think it would change women getting reconstruction but knowing more about all these issues and all the different choices would be really wonderful. At least we wouldn't feel blindsided after the fact.

I also think it should be mandatory that doctors tell you about all the choices out there even if they don't preform them. It happens with other medical issues so why not this?

Kate, I'm so sorry. Now after my car accident I'm not sure what pain is what. However being on stronger pain pills helps for the immediate moment. 

I have been in such a funk today.  I'm trying to be pro-active about all this but really don't know where to turn.  I made an appointment with an LE therapist but she can't get me in until April 11th!  I found another place that can get me in on Monday but they didn't seem that knowledgeable and their LE therapist is a man which I'm not too comfortable with.  I don't know what else I can be doing.  Does anyone know how you go about finding a regular physical therapist who is trained to work with MX patients?  Or where you go to be evaluated for post mastectomy pain syndrome?  It just doesn't seem like there are clear cut avenues for post op issues like ours.

mlp, Tina, Summer, Stanzie and Ronna- Thank you!  It helps just knowing there are others out there that understand.

Stanzie- It does get challenging when there is overlapping pain, doesn't it?  I keep thinking is this MX related, fibro related, depression related, etc?  I think the hardest part is when you have multiple issues going on doctors start treating you like you're a hypochondriac or something.  I just want to yell, "I'm not crazy because I'm in pain!"

Kate -  I used Find A PT and searched for your town using cancer specialists and women's specialists.  I didn't see anything come up, but there could be more in your area, and they just aren't registered with this system.  (You could also try it with a wider search parameter.)  So here's how I'd proceed next if I were you.  Contact the APTA Oncology Section and/or the Women's Health Section and ask them for referrals for someone in your area.  I might be able to find out more from a friend who is a LE/cancer specialist.  I'll ask her if she knows anyone in your area that she recommends.  

If you can't find a physical therapist you might consider a massage therapist who is trained in myofascial release (for the pain issue).  Problem is, they aren't trained like a LE PT for lymphedema issues, so I'd be real cautious if you went that route.   You'd definitely want to do your due diligence and make sure your doc was ok with it.   BTW, there is a fantastic myofascial release clinic up in Sedona, but it ain't cheap.  PM me if you want the information.  

I'm sorry you are in chronic pain.  I know how awful it is, having lived with chronic nerve pain in my leg for over 15 years.   

Myofascial Release has been really good for me too!

Yes, dancetrancer.  My PT's even help John train others.  They have been invaluable in my health and well being.  They are helping me now with my implant pain.  Wish I could go back to Sedona!  Love that place!  

Can you give me some more info on John Barnes? Do you know where in Pa this clinic is??

Kate....Binnie has a link to find LE thereapists in your area. Unfortunately, I don't remember but I'm sure she can give you that information. That is how I found the LE therapist that I went to.

I am finding the fact that Alloderm can be removed rather fascinating. I had to have it as a repair on both sides as the pec muscle had torn, first on one side then 6 months later on the other, and the PS said the only way to fix it was with Alloderm. He said he really dislikes using it but also said that when it "takes" it integrates with your own tissue and after a year you really can't tell it is there. I had to have my right implant removed and replaced 6 months after the Alloderm repair on that side. The PS used the same IMF scar that had been used 4 times before (original MX, 2 implant placements, implant removal reinsertion with alloderm sling). The PS said he could see where the alloderm was integrating with my own tissue and felt by a year it would not be visible during a surgery. My repairs were very successful although I still have discomfort in my right upper back which never goes away.I guess the Alloderm sling is always there but not the other that supports the pec muscle. I did not have any difficulties with excess bleeding when the implant was replaced and he cut through the alloderm layer. This procedure was performed in PS office.

Thanks for this info! I will be checking this out.

mlp - The Paoli clinic is practically next door to me. My myofascial therapist studied under Barnes and was then on staff for over two years. He has his own office now, is very skilled, and his rates are much more affordable.




dancetrancer - MFR is one of those therapies that is difficult to describe, isn't it? It really makes you aware of how interconnected everything is in your body. I remember my therapist was working on the side of my chest and then near my rib area, and I could feel it in my neck. At one point my jaw started moving uncontrollably like I was shivering when cold. The referred sensations feel bizarre at times, but it is very effective. I got a lot of relief from the "iron bra" sensation.




Does anyone know if the Barnes clinics take Blue Cross or other insurance? While my therapist is considered out-of-network, I do get reimbursed by my Blue Cross policy. I got the impression that the sessions at the Barnes clinic were "movie star rates", but I honestly don't know. LOL




Kate - the direct link to finding a LANA certified LE therapist from the Step Up Speak Out site is:




http://www.clt-lana.org/therapists/default.asp




Delilahbear - Yes, the point of the alloderm is to integrate with your muscle, and apparently over time it is "absorbed". I'm sure this is why it is difficult to remove. I did not have alloderm, was one of my PS's last patients before be started using. When I considered surgery to prevent deconstructing, one of the methods of correcting capsular contracture was to slice the capsule so the implant could lay flat again, and then patch the opening with alloderm to close it. That didn't sound like a good idea to me. I asked my myofascial therapist if the alloderm is actually absorbed by the body, and he said "no". He advised against using. My good friend who is a PT and trained in myofascial release in Europe said no way to the alloderm. I asked my LE physiatrist about it, and while she calmly said "no", the look of concern on her face said it all. I'm sure it takes a skilled surgeon to remove or work in an area where alloderm was used.




As far as post mastectomy pain goes, I've noticed that some have had nerves enmeshed with scar tissue, and breaking up the scar tissue can help provide relief. I'm wondering if alloderm is part of the equation, how easy is it to correct? Can it be broken down manually like regular scar tissue or does it need to be removed surgically to free the nerve? Just mulling over out loud, as I really don't understand all this since I do not have medical training.

Tina...I think we may have talked about that therapist before because I remember you giving me some names of therapists a little closer to me. I also think that one of the names mentioned was the woman from Lititz that dancetrancer told me about. I definitely want to look into this!

My BS was certain that Alloderm could be part of my pain issues but my PS was in total disagreement. My BS went as far as having the c - reactive protein test to measure for inflammation. When it came back normal, he agreed with my PS that it was not the issue!! How do we know this is the only thing that would determine if Alloderm could be part of the problem? Who do you believe? So frustrating to never get answers!! 

Kate There is a Lymphedema Program at my hospital. Perhaps they can guide you with numbers in your area of specialists. 973 322-7500. (Barnabas Health).

Hugs,