Capsular Contracture pain

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CTLMom
CTLMom Member Posts: 56
edited February 2016 in Breast Reconstruction

I haven't posted anything for quite a while but I am feeling desperate at this point looking for any advice or even just women to commiserate. I'll try to put my story in a nutshell. I was first diagnosed in 2007 and had L side mastectomy. No lymph nodes involved but because of tumor size I had 4 round of AC. A little over 5 years later in Jan 2013 had a very small recurrence in chest wall. No chemo but I did have radiation after the surgery. Fast forward to summer of 2014 I was really noticing that the left implant was changing shape. At the same time my mom was diagnosed with stage 4 Non-Hodgkin's lymphoma so while she was going through her treatment I was to busy and worried about her to deal with my own issues. She went into remission and then was re-diagnosed in May of last year. While trying to help my parents with all of my moms medical issues I ended up in the hospital at the end of June with cellulitis on the same left side. After 5 days in the hospital I went home and the infection cleared up. I met with the PS (my original one retired) and he explained that because of the radiation the choices for reconstruction revision are now very limited. During the fall my mom went through quite extensive treatment and is doing much better which now allows me to take care of my own issues. After my most recent visit to PS I was told I have a stage 4 capsular contracture. This wasn't a surprise because I have been feeling increasing pain and tightness in the chest muscle and under my shoulder blade. The soonest could be scheduled for surgery (lat flap) is March 2nd. I feel increasing tightness and the pain is almost constant. Does anyone have experience with kind of situation? PS told me that fat grafting was not an option because my tissue is adhered to the implant so there is no space available to put the fat. I feel like I'm going out of my mind. There is no relief for this constant constricting feeling. I am sometimes wondering if I am making too much out of it... Muscle relaxers help a little bit but it's still so tight. Any suggestions or even anyone sharing their story would be helpful.

Thanks

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  • Stunned_at_33
    Stunned_at_33 Member Posts: 27
    edited February 2016

    I do not know if I have Capsular Contracture, but am beginning to think that I do. Had my BMX (lymph node removal, left side) with TEs placed in June 2014, radiation to left side followed. Implant exchange to left breast took place December 2014 right after Christmas due to infection. Right implant and fat grafting to both sides took place July 2015. Since the latest surgery my left side has seemed much tighter than it had before. It seems to get tighter and tighter each day and more unbearable. So much so that my whole rib cage, shoulder and now left arm are in constant pain. Not an unGodly pain but like a constant dull toothache that kind of drives you mad. Though at times when I raise my arm straight above my head, I get a sharp stabbing pain in my lower part of my rib cage. The only other fear I have is that the cancer has returned and has spread to my rib cage/chest wall. I hate everything about it and have decided to remove the implant, but can't decide whether to do just the DEIP flap to replace it or a stacked DEIP/PAP 4 flap. My PS said this "stacked flap" is typically only done in private practices because they can make more money the more flaps they do, but he agreed to do it if I want. I originally wanted to do the DEIP flap back when I had my BMX but didn't feel I had enough tissue/fat to give me what I wanted so didn't. But than came across this stacked flap option. Kind of scared and have been stalling in making a decision but I really can't stand this feeling. Would almost rather have nothing there at all!!

    Hope you find some relief soon @CTLMom.


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  • CTLMom
    CTLMom Member Posts: 56
    edited February 2016

    Stunned I'm so sorry to hear you're dealing with this kind of pain. Did I understand correctly that you only had radiation to the left side? If so that would explain why you are not experiencing the same pain issues on the right side. Capsular contracture after radiation is very common from what I've read. I'm so glad you were able to have the benefits of fat grafting. I've read so many positive things about it. I have actually never heard of of the "stacked flap" surgery you are contemplating. I hope that brings relief! This has been a horrible week for me with the tightness seeming to get even worse. I can't imagine what it will be like in the time I have to wait for this surgery. I'm now getting a pain in my shoulder blade that feels like a big spoon digging and twisting around (kinda like what I do when the ice cream is really hard to get out). I'm losing more range of motion in the left shoulder so it's harder to keep stretching. I hope you're not left handed like me. That just adds another level of fun to this whole mess. I know how you feel about making the decision. It is scary! I completely get what you mean. Lets hope we make the right one!

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  • RAK1
    RAK1 Member Posts: 240
    edited February 2016

    I am experiencing capsule contracture

    They look awful and are painful.

    I am hoping for a revision soon!

    Robin

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  • DiDel
    DiDel Member Posts: 1,329
    edited February 2016

    CTLmom sorry you are going through this. I had a chest wall recurrence too and I hate to say I passed on whole breast rads mainly because of the affects on recon. I felt like I went through 8 recon surgeries and the recurrence was only 5mm. I know you have to find a PS that is experienced on operating on radiated skin. I had stage 3 CC so I cant imagine the pain you are in. Why are they waiting until March? are they waiting to ensure your skin can handle it. I know on radiated skin you have to be so far out from treatment before they will consider operating. Have you been massaging the area...that may provide some relief as well.

    When I had it last time my ps simply replaced the implant and cleaned up the scar tissue. I haven't felt discomfort since and that was 3 years ago.

    Good luck..i hope it is resolved soon

    Diane

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  • CTLMom
    CTLMom Member Posts: 56
    edited February 2016

    Thanks Diane I hope so to. To answer your question, my PS isn't waiting till March for any other reason than that was his first available opening. My radiation was in 2013 so my skin is healed as much as it's going to be. I am trying to massage the area but it is so uncomfortable that I'm not really getting relief. I'm just incredibly frustrated at this point. There doesn't seem to be much of anything I can do for relief. In some ways I wonder if skipping radiation would have worked for me. It has just complicated everything so much!

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