Pain after six years of mastectomy

ronqt1

Hi, I posted earlier but blocked it by mistake. I have been on these boards on and off here and there since my diagnosis.

I had my mast (right) in Oct. 2009, followed by te, in March 2010 exchange with mastopexy on left. There were a few capsular contractures, scar issue problems, In Sept. 2014 I had LD Flap for scar tissue problems, but the pocket opened and in Dec. of 14 I had to have the pocked fixed. In August of 2015 I had another capsulary. I just had an MRI to see what pain is . I have severe discomfort . the PS says I am fixated and too emotional with the implant. I am not crazy. I am not leading the life I should have with pain. When I went for a second opinion before the Ld Flap done by my original PS, the other dr. agreed and so I had my original PS do the LD flap. I have nothing but pain, having been to pain managment, physical therapy at lympadema clinic but no lympadema. I know there is pain the Mri showed nothing. My PS suggested taking the implant out for a trial of three months. He said to think about it before making any move. Has anyone ever removed their implant for awhile and tried agai.n He will leave the skin hanging. Just curious has anyone been there.????

Thank you.

macb04

Hello, I am sorry to hear you have so much pain and repeated surgeries. I will briefly list my surgeries, uni mx July2012 with TE put under my pectoral muscle. I was going to have a DIEP. Changed my mind, heard about BRAVA and fat grafting. Had 1 fat grafting procedure 2014, the PS said take out the TE, did that and got first bad infection, 300cc's pus taken off my chest. Had adhesions that wouldn't even shift with the next fat grafting procedure, he finally cut it loose on the 3rd fat grafting procedure. He didn't know how to do it,. Switched to another PS who did fatgraft for 4th time, had another bad infection. Lost most of my grafted fat. Had 5th fat grafting done by the 2nd PS who, while kinder, was not wonderfully more skilled with fat grafting. I had rad damage so my circulation was poor initially. I finally started getting Hyperbaric Oxygen Therapy after the 3rd surgery. It vastly improved my skin. Got another New PS who put in a new TE OVER my pectoral muscle. So much better than it was the first time when my muscle was chopped up. I had implant exchange August 2015.,,,,again, it was placed Over my pectoral muscle. No Stratice or other Acellular Dermal Matrix stuff, although that has been used in other over the muscle placement of implant surgeries. I had nipple reconstruction on Dec 3rd, 2 weeks ago today. I plan to see Vinnie Myers down in Southern California later this year for an 3D areola tattoo. I have had 16 surgeries in the past 3 years, and I am finally done.

I am not perfect looking by any stretch, but compared to the adhesions /crater in my chest that I lived with for 4 or 5 months, this is much , much better. I feel nearly normal again. Over the pectoral is the way to go if you want to try again with an implant. PM me if you want me to show you what it looks like. I don't know ifany of this would work for you

http://www.ncbi.nlm.nih.gov/pubmed/25455288

http://link.springer.com/article/10.1007%2Fs00238-014-1001-1

Good luck, I will be thinking of you.

ronqt1

Hi Mac: Sorry for lateness in responding. My computer is not letting me type on this site. Of all times.

I am sorry for all the stuff you have gone through as well. I will have to keep my response brief because I am afraid my fifth time in trying to answer you will shut down. I have wondered if removing my implant and muscle from LD flap should also be moved. It is constant torture under my arm. Yes I have scar tissue problems which have somewhat subsided but constant nawing an dpulling is always with me. I thank you for your response and will keep you as a favorite of mine. I will also go to the sites you have recommended. The LD flap was done because I had constant pounding in the implant. Botox has not helped recently and I do get to see a new dr. on Monday (younger with different skills). I will also go to LD site because the under arm feeling is discussed there alot. Again, I thank you for your answer and wish you healing and good tatooing!!!! Hugs, Ronna

macb04

Hi Ronna,

You have my sincerest hopes for a good resolution of the painful/nagging symptoms you have been putting up with.

Have you read about ACCOLATE for treatment of capsular contracture? It has been used for this in a couple trials. It has been linked to liver problems in some women, but also seemed to relieve capsular contracture in some as well. http://www.ncbi.nlm.nih.gov/pubmed/19338783 Nothing is ever easy, is it?

Could you have pain from neuropathy ? I think I'm having some arm stiffness /tightness in my upper arm that could be neuropathy. Sorry if you have already figured this out. Sometimes I just want to spark different ways of looking at things to help figure out solutions for myself and others.I think I am going to try ALA for that. I read it is not good if you had Some kinds of chem like taxanes?, but instead I had Cmf,so I plan to try it to see if can help my arm pain. Take care, I hope you get relief soon.

ronqt1

Hi Mac: Happy New Year to you and all my sisters. I decided to post a new topic, I am not a villan nor an adversary. I was going to post it here and Anger, but it is under breast reconstruction. You are correct too, I do have neuropathy and have been on medication but I was too medicated and had to be weened off by the best dr in the world my little primary, not a money hungry crazy person.

With love and respect and hugs,