Topic: Lymphedema and scarring

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Hi, I've never posted in this forum before, so I'd like to introduce myself.  I had a bilateral mastectomy in April 08.  Expanders were placed at the time of surgery, and in September I had exchange surgery with permanent silicone implants.  Below is my story of the past year and the problems I’m experiencing.  I apologize for it’s length, but I’m hoping someone here can give me some feedback and guidance. 

 

In Dec. 08 I experienced some burning, stinging on the side of my chest, and a PT with LE training said I had mild LE.  She prescribed exercises to move the fluid.  I was unknowledgeable at the time about the levels of LE training and this PT had been referred to me by my breast surgeon. She was connected to the hospital where I had my surgeries.  Fast forward to April 09, and I experience a flare up of LE while traveling to Fla.  My implant also begins to distort and shift.   At this point, I educate myself further on truncal LE, visit the Step Up site and locate a LANA-certified therapist in my area.    

 

I return home and see my PS, who looks at my arm and says I don't have LE, it's "activity swelling".  I tell him about truncal LE and that I want a script for LE evaluation.  He tells me to see my BS since he's the guy who took out my sentinel node (the only node removed) but that he will write a script if I need it.  About the change in appearance of implant and development of pain, he says I may have early capsular contracture and prescribes Accolate.  I'm supposed to call back in month to report whether Accolate is working.

 

I then see my BS and he looks at my arm and says I don't have LE. I remind him that my initial PT back in Dec. had diagnosed me as having mild LE.  I insist that I need a prescription to have this new swelling in my chest looked at by a LANA-certified therapist, that LE could impact the quality of my life and I wasn't taking any chances.  He writes me a script.  I see the new LE therapist, and she takes one look at me and says I definitely have truncal LE.  I’ve seen her regularly for MLD sessions over the past few months and just recently have been cut loose since my LE is considered under control and I can manage by myself.  Will follow up in 3-6 months.  I have been referred to a qualified LE massage therapist for monthly massage.  

 

So, now I'm still dealing with the implant and it's poor appearance.  I'm also dealing with increasing back, shoulder and neck pain (knots and spasming) and a lot of tightness across my right implant, which is the one that’s distorted.  That's my LE side, too.  From the beginning, my gut feeling has been that the scarring and tightness is somehow connected to the LE.  I'm thinking the constriction of the muscle and scarring may be preventing the flow of LE fluid.  My LE therapist said she didn't think they were connected, but that they probably didn't help one another.  This is true -- when one issue is exacerbated, the other seems to bother me more as well.

 

After a month of Accolate and no change, I call and talk with nurse and PS says to continue for second month.  After second month, there is still no change and nurse says he suggests taking for another six months.  I hit the ceiling, and tell her I'm getting a second opinion.  She tells me to keep my follow-up appt. in July and PS will look at implant.  I see 2nd PS first and he confirms Stage 2-3 CC and says massage won't work, Accolate won't work, and that surgery is only answer and he will give me new implant.  I then go back to my PS and he confirms Stage 2 CC but says implant is softer than it usually is for CC.  I tell him I have been doing massage of tissue/muscle and get some relief from that.  We also talk about the Accolate and I decide I will continue and see him in early Nov. and then we will determine what to do.  Beginning of Sept., my Accolate script is done and I still haven't had any pain relief or change in implant.  I decide not to spend another $300 and stop the medication.  Stopping doesn't negatively effect implant or pain.  

So, I'm talking with a friend who is a PT (not in my state) and tell him how I've been doing self massage of implant and area around it and getting some kind of relief but can't reach certain areas by myself.  He refers me to a local PT skilled in myofascial release and suggests I try this as a last attempt to avoid surgery. 

My whole concern is what is the cause of the problem with my implant?  Is it the capsule itself that is distorting the implant?   Is there scarring in the tissue and muscle outside the capsule that is creating tightness and pain and distorting the implant?  Is there cording?  And does this constriction and/or scarring have any effect on my ability to manage (or resolve) the LE?  

 

If the capsule isn’t the cause of my problem, then I don’t think replacing the implant will correct the pain and tightness in my back, neck and pectoral area.  I am trying to avoid surgery for obvious reasons, but also out of concern for exacerbating the LE.  And it seems that many women who’ve had CC and had their implant replaced often develop CC again. 

 

Just what is the difference between CC, scar tissue in muscle or tissue, and cording?  Are they all one in the same?   I know you gals can’t diagnose my issue, but I hope you can help me sort through all this.

 

If you’ve stayed with my post to the end, thank you for reading!!

 

Tina

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