Capsular Contracture pain

CTLMom

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

PS I also posted this under reconstruction topic.

Meadow

CTL, so sorry. I too have contracture, I had a mastectomy and direct to implant recon, then rads. My PS did not recommend this type of recon for me, I rather told him I would roll the dice in regards to having contracture after my rads...which of course I did. Ok, now some positive stuff...I went to a physical therapist who specializes in lymphedema. I had my PS office write a referral to her, as I said I was having some slight feelings of LE (lymphedema) and wanted to stay ahead of it. I had also read that a good therapist can help with contracture. She did help. She did massage techniques on the implant and the super tight tissues, also under my arm. I did experience improvement. Is there a way you can see a PT for this? Is there a PT clinic in your area? Ask for a referral. Hope this helps.

CTLMom

Thanks Meadow,

I'm sorry to hear you are dealing with this as well. I have never had lymphedema however the PT is certainly worth looking into. I have also read about the benefits of massage. I'm supposed to be traveling in two weeks and I would like to find help before I go. Thanks again!

nihahi

Sorry to hear you are having this issue. Although I did not ever have rads, I also had many implant issues. I ended up with Stage 4 capsular contracture which was exactly as you described. Deformed implant, constant pain including the entire shoulder area, both front and back. Months of physio helped, a wee bit, but only lasted until my next physio appt, since what was causing all the problems wasn't being resolved. When the implant was removed to do a flap reconstruction, the PS's found my rib cage had been "bowed" due to the pressure from the implant/scarring. I had a muscle sparing free Tram flap, then more physio, and everything has turned out better than I dared hope for. The bowed ribs will likely always be there, but the pain is gone, the shoulder function has fully recovered and I am extremely happy with the breast recon.

It is important to know that once you have had implant issues like capsular contrx.....the odds are highly likely the problems will recur if another implant is tried.

Hope you find some help and solutions.

macb04

Hi, recently saw this information about a study done on Capsular contracture treatment using low level lasers. This same 904nm laser was used in slightly older Australian studies for lymphedema treatment. I contacted the company ( RyanCorp)t makes the laser. It is an Australian company. A laser can be rented for $350 per month. So while that is a bit expensive, so is dealing with another surgery or all that discomfort or pain.http://cosmeticsurgerytimes.modernmedicine.com/cosmetic-surgery-times/news/laser-therapy-capsular-contracture

https://m.facebook.com/permalink.php?story_fbid=440228402711788&id=153772808024017

Sorry you are having pain. I hope you can get some relief soon.Just a thought, as I am always looking ahead for problems,