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    Major scar tissue after double mastectomy
    stellinator posted:
    Hi everyone!
    In April 2010 I had a double mastectomy with chest expanders. 2 months later the expanders were removed (couldn't stand them) and replaced with silicon implants. 2 months later the implants came out (couldn't stand them either). I now have major scar tissue and a in constant pain and discomfort (24/7). It is as if I am touching a brick when I touch my chest (specially the one that was radiated). How can this scar tissue be removed without causing more?
    susan1240 responded:
    Dear Stellinator,
    My situation is similar to yours. I HOPE you respond because I have not communicated with anyone like you who has similar issues with implants and pain. In Oct. 2009, I had a double mastectomy, chemo followed, then in April 2010, had chest expanders. I was in constant pain/discomfort with each fill ...In July, my plastic surgeon put in silicon implants. Since that day, I have been in pain/discomfort 24/7. It feels like massive fluid build-up and poking in the entire chest region and down the torso.Am sure there is a lot of scar tissue too. Have tried CT scans, MRI's, physical therapy, Botox/steroid injections, acupuncture, countless visits to the Pain Clinic, bc support groups, pain and other meds, and just recently went to a plastic surgeon at the University of Michigan for a consultation. He told me to get the implants removed or just learn to live with the pain. (no guarantees though!) Sounds like radiation might have caused some of your difficulties. I always thought that if a woman had radiation first, she was not able to have implants ... the skin in the chest changed/thinned out after radiation. I thought women like you could have other breast reconstruction procedures, working with your own tissue and muscle. I see you were last on this site a month ago .... don't know if you read other threads daily. Would really appreciate hearing from you or anyone else who is going through challenges with managing pain.
    sam1985 replied to susan1240's response:
    Have your surgeon evaluate you frequently to ensure that you do not have an early infection or a retained fluid collection. and
    Consider physical therapy to help with range of motion exercises and deep tissue massage. the combination of these will help subside any pain due to scar tissue formation. All the best!!
    susan1240 replied to sam1985's response:
    Dear Sam ...My last evaluation for fluid retention was in Jan. 2013. Have had a couple of CT scans, MRI's and ultrasounds and fluid has NOT shown up.(according to the radiologists) It is very difficult for me to believe that there is no fluid build up in the chest area. My original plastic surgeon has not helped much ... he just says everything "looks" normal. Even went to 2 other plastic surgeons ... the last one said to have the implants removed, although there would be no guarantees that the pain/poking sensation would go away. Tried about 2 years of physical therapy ... the exercises hurt too much, but the massages felt good. When I wake up in the morning, the whole region is hard and poking, stinging ... after a shower, and lying in certain positions, then walking around, the hardness seems to "break down" a bit and I am more comfortable. Pain meds help take the edge off. As far as I know, there is no infection ... no fever, and the breast region is not red or hardened. Does anyone on this site have a similar experience? Sam, thanks for taking the time to respond ... what's YOUR situation?
    kiwiallright responded:
    HI Ladies

    I had a bilateral mastectomy in 2009, waited a year before reconstruction, I had the DIEP Flap reconstruction. During the summer of 2009 I had a lot of problems with scar tissue build up on my right side due to radiation. One of the things that helped was believe it or not swimming and the swimming stroke that I found that helped the most was backstroke, at times I just swing my arm backwards and it helps to loosen up the scar tissue. When I had my reconstruction surgery my plastic surgeon removed a lot of scar tissue. The DIEP Flap procedure is where they take the fat from your abdomen. No expanders or silicon . Another thing that you could try doing to loosen up the scar tissue is when in the shower use lots of soap and water stretch and rub the area, I know that you are in pain but with a little persistence you will get the scar tissue to loosen up. You could also with a new plastic surgeon to see if they can remove the scar tissue. The scar tissue will always develop. With some people it is more than others. Good Luck
    susan1240 replied to kiwiallright's response:
    Dear Kiwiallright and others,
    Thanks for your response and information. You're right ... I know I have scar tissue. My plastic surgeon told me that he saw it and removed some during his 2 implant surgeries. (expanders, then later silicon implants) Fortunately, I did not have radiation ... but did have chemo for about 4 months. The problem is if I have surgery to remove the scar tissue, more scar tissue will form from THAT surgery!! You can't win. : ( My biggest problem is fluid build up around the implants and now down my torso. Maybe the implants are foreign objects that my body is somehow rejecting. Has ANYONE on this site ever heard of that explanation? Have tried swimming .. in the water no pain is felt, but afterward is a different story. I hate to be so negative ... this is so unlike the positive, up-beat person I used to be. (cheerleader, homecoming court, avid golfer and tennis player, retired teacher!!!) For now, I don't want the implants removed ... there is too much coming up and I want to enjoy the holidays without recovering from more surgery or anticipating surgery. Thanks for listening ... many of you do truly understand. We always support each other in difficult AND good times... "it takes one to know one!" : )
    enujesor replied to susan1240's response:
    Dear ladies Just read your posts, and realise how common long term pain is after mastectomy. I had double mastectomy Feb 2012, expanders, chemo and then silicon implants. Over a year of pain and two sessions in hospital getting IV antibiotics for cellulitis, my plastic surgeon decided enough was enough and removed them last August. He gave me a tidy up operation three weeks ago. I was looking forward to it as I thought my chest wouldn't look so disfigured. How disappointed I am! The scars are even longer, ropey, and one side is totally different to the other. That's it - no more surgery. I just hope the pain I have just below where the breast was will go away. It must be the muscle that sits over the ribcage, and feels like it's being stabbed when I move or turnover in bed. Now I have to have lymphedema therapy for fluid build up, and I have to massage the scars to try to loosen the skin. At least I know I'm not alone going through this, and hope you dear girls get over your suffering and can enjoy life again. Good luck xx
    marefade replied to susan1240's response:
    I had bilateral mastectomy in 2008 with reconstruction 6 months later. I had tissue expanders and silicone implants. The whole left side of my chest was and still is very numb. Some feeling came back after a lot of painful, weird itching and a few years time. Now it's been 6 years and the left sided chest pain/burning is pretty much constant. Saw the doctor who is sending me to have questionable scar tissue massaged out. I'm happy to see the doctor knows what this is. I kind of thought I was going crazy or had a recurrence, because it got worse and worse over time. Did you get relief from your pain? btw, I am from Michigan too.
    susan1240 replied to marefade's response:
    Dear marefade (btw), enujesor (12 moths ago) and others,
    It has been over a year since I've been on this site. I hope you or any other similar women respond. In 2009, I had a double mastectomy, then reconstruction (expanders first, then implants 6 months later.) Because of fluid build up and constant pain, I decided to have both implants removed last Oct. 28, 2014. My pain has gotten worse, unfortunately. Am going to try physical therapy AGAIN in 2 weeks. This will involve lymphatic massage therapy. I think I have truncal lymphedema, but very few doctors/professionals are calling it that. Am in pain 24/7 and in bed/on the couch for hours each day. My life has changed, but am not giving up hope. My love for my husband and son helps me to stay positive. Would appreciate hearing from someone. You understand! Thanks .
    brcansur2 replied to susan1240's response:
    Hello, Susan I have not been on in over a year myself due to health issues at first more surgeries then my computer died. I remember your story we chatted a lot because I too had a lot and still do of pain in my chest and ribs. They still don't know why say could be scar tissue because of all the surgeries I have had to have. Due to body not taking well to implants then getting infection and needed one removed. Then one leaking and having to have that one removed. After each one removed I did get new ones and mine are saline. Thank god for that. I wanted to just keep them out and go flat but the surgeries I would need to get my chest flat again would be worse then my mast surg was. So just had new implants put in but any more issues and they are staying out. I really do understand how you feel and how it gets to have doctors keep telling you there is nothing wrong or nothing there. UNTIL SOMETHING GOES WRONG like it did for me and I had to have emergency surgery. I am so sorry to hear things got so bad for you and you had your implants removed it still is really bad. I am back if you want to chat any time. Oh it would help if I said this is Roberta hope you remember me. Keep your chin up girl your a fighter sending loads of angel hugs and best wishes your way.
    seercher replied to brcansur2's response:
    What are expanded and what are they for?sounds like more education concerning the behavior of body tissue after these events is sorely needed.

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