Deconstructing for pain relief

MondaysChild

Did it work or did you still hurt from the original implant reconstruction?  Looking for experience in results as I continue to move toward deconstruction to relieve pain from implant reconstruction during 2011. Pain management physician says it will not help and too late for repair, but I cannot believe that this pain is will be a part of my life for the rest of my life.

chana21

I'm so sorry to hear you're dealing with this chronic pain. :-( What intervention(s) do you mean exactly when you say "deconstructing?" What is your surgical (BC) history? Do you have a hx of infection? Can you describe your pain? Has anything you've tried thus far helped relieve or reduce the pain?

MondaysChild

By deconstructing, I mean removing the implants.  Undoing the reconstruction, at least as much as possible. 

I have had five surgeries related to BC from November 2010 through November 2011:  Lumpectomy, bilateral mastectomies with immediate one-step reconstruction, undo that for necrosis and place tissue expanders, another set of tissue expanders, exchange to final implants.

I have had constant pain on one side since exchange in November 2011.  I have been going to a pain management physician who does not believe removing the implants will solve the problem, that it is too late for that.  That seems so hard to believe though, that I was wondering what other's experience might be.

greenpeace

I am certainly not a doctor but I would tend to agree with it being too late. You might feel better having the implants removed, but there is no guarantee. I did have nerve pain on my right side originally and it went away. I now have some dull achey pain on my left. I just had the exhange in July,  and I am hoping the goes away eventually. Well compared to the nerve pain, I would probably only call it discomfort.  I hope that things get better for you. I know there are articles about post mastectomy chronic pain. I read a few when I was experiencing the pain during the expansion. Good Luck to you

greenpeace

BTW I have had 4 surgeries since last December so I know it can be rough. Hang in there.

MondaysChild

Thanks, Greenpeace.  You are four weeks out from exchange surgery.  I am NINE months!  This is not going away.  I am happy yours did go away for you and in the normal recovery period.  I am way beyond that, unfortuantely.

Anonymous

No, it does not have to be too late. I had chronic implant pain for over two years and tried all kinds of PT and myofascial release treatment in an attempt to get relief. I developed capsular contracture in my right implant and it distorted. I also developed truncal lymphedema in that side of my chest below the armpit. I dealt with the lymphedema, did PT, stretched, and had complete range of motion. The myofascial release did help somewhat with the scarring/capsular contracture. However, my chest always felt tight and that I couldn't take a deep breath. I know my body, and I finally got to the point where I realized that no amount of therapy would help and the implants needed to come out. I did some research on replacing, but after capsular contracture on first set, the likelihood of getting again on second set was even greater. Because of my lymphedema, my doctor and various therapists all said removing without replacing was best for my health. I really knew that, but it was good to hear that from the people I had come to trust and knew had my best interests in mind.

I interviewed three plastic surgeons to learn about the deconstruction process. First one said I might still have pain with the implants out. He said he would only remove the capsules if they were thick, and that the body reabsorbs anything left. The second PS said I might still have pain with implants removed. He did offer to remove the capsules when I asked about it. He made the observation that the implant looked like it was poking through the muscle. I interviewed a third PS, who also said it appeared the implant was poking through the muscle. She said she would remove implants, remove capsules (considered it necessary) and tack the muscles back to the chest wall (the way they sit normally pre-recon). This PS also had a proactive approach to preventing LE and minimizing effect of surgery on it, so I went with her. She did everything she said she would, and in the process she discovered that my implant had indeed poked through the muscle and the muscle itself was severely damaged. She repaired as well as possible, tacked both sides to chest wall. My pectoral muscles function/feel like they did pre-recon. The main thing, is that I am 99% pain free since deconstructing. My pain was definitely all implant related. Any slight discomfort I have now is related to lymphedema, and that comes and goes according to how much swelling I have. That discomfort doesn't even touch what I felt with my implant pain. I instinctively knew this ahead of deconstructing, but because I had worked with lymphedema doctor, lymphedema therapist, myofascial therapist/PT, I felt I had a grasp of what was causing what.

I do believe that women have pain that is not related to implants, and they may continue to have pain after deconstructing. It's hard to say why - issues and complications from the first surgeries and issues/method of deconstruction surgery. It is such an individual thing. I had a very good PS do my recon, and my results were good. I had an excellent PS do my deconstruction, and I feel very fortunate that I have been released from the pain. 

I'm not sure what doctors or therapists you have seen, but it is worth it to make the rounds to get an idea from those in different professions. I would definitely have a PT check you. I also believe that a good myofascial release therapist/PT can evaluate whether there are adhesions/restrictions that may be causing pain. There is so much scar tissue that can develop after mastectomy and reconstruction surgeries. I also think a physiatrist would provide a different point of view than your breast or plastic surgeons, or even your primary physician. They look at the body as a whole and have their own take. Finally, I don't know whether you have been evaluated for lymphedema by a good LANA-certified therapist. Lymphedema in the trunk can be very painful, and the additional fluid can create pressure in all kinds of places that will drive you nuts. 

Here is a link to how to find a lymphedema therapist who is LANA certified (the gold standard for training):

 http://www.clt-lana.org/therapists/default.asp

 MondaysChild, at the time I began researching deconstruction (fall 2010), there were only three women who responded to my question about the experience. All three had positive results - I honestly cannot recall the reasons they deconstructed. One had deconstructed not long before, and I believe it was due to pain. I know there are others out there who deconstructed after I did (April 2011), and a couple have felt much better. On the other hand, there are a couple who have continued to have pain, but whether they've had some relief, I don't know.

I just want you to know that it is possible to achieve total relief with the implants removed. Unfortunately, there's only one way to know for sure, and that's to take them out. In my case, I was just done with the process and didn't want to have to think about another surgery down the road - they had to come out when they "expired" and/or be replaced with another set. I just didn't care enough to worry about whether I had implants or "breasts" anymore. Feeling good was the only thing that mattered.

greenpeace

Mondayschild,

Yes, that is a long time. That sucks. I hope things get better and this is possible option for you.  And you get some relief.

bluepearl

Some surgical pain can last for several years before it gets better. It takes a long time for some nerves to heal. A fellow who had a lung removed from cancer said his pain continued for 3 years before it went away. There's hope!!!!

MondaysChild

Thanks, Tina.  I read your story before and it goes give hope that deconstruction will make this pain go away.  I just cannot understand why I am told a pain that started the day the implants were placed will not go away if they are removed. Instead, I was given an official diagnosis of Post Mastectomy Pain Syndrome.  My mastectomies were 11 months prior to exchange and this specific pain beginning, but whatever...  Instead, I am next trying denevation for the area. Literally going in and burning the nerves so that they do not work.  Such fun.

I was diagnosed with truncal lymphedema and have been treated by a LANA certified therapist so that is better. This is another and different discomfort. The pain that I cannot hardly bear anymore is on the right side, while the lymphedema is more on the left side where the level 1 nodes were all removed. 

During my initial evaluation, the pain management physician said I appear to have four different things going on.  The other two distinct pain issues are one at the end of a scar after surgery number 3 in January 2011. That is a stinging burn that kicks up from time to time.  That one I do not think will go away just by removing the implants, but maybe the internal scarring can be address so that whatever nerve is caught up in it is released, if that is what it is. 

The other issue is the discomfort from the overstretching of the pec muscles to accommodate the implants underneath.  I dearly hope those can be repaired.  The plastic surgeon who did my reconstruction said they could not be fixed from where they had been cut.  But I have also been told differently by another. In the meantime, I use a very expensive topical cream for that.  It is sticky and unpleasant and I just can't see me spending the rest of my life dealing with that.

MondaysChild

Thank you, bluepearl.  I am approaching the two-year anniversary of my diagnosis and start of surgeries.  If this pain cannot be relieved with treatment, then I hope it is only one more year to go away. I do not hold much hope for that since it has not gotten a bit better over all of this time, and actually worse.

shoofoolatte

I had deconstruction surgery on August 8 2012 - (a little more than a week ago).  I had Mastectomy on right side in Dec 2007, Reconstruction in March of 2008 - silicon implant on the right side, another silicon implant on the left for a "lift".  The right side and the left side never matched, and the right implant had migrated up to my collarbone and around under my arm. 

 Last week I had both implants removed.  There was a lot of excess skin under the arm and that was all tightened up.

 I can say that, at this point, yes, the deconstruction helped!  The pressure against the right pectoral muscle is gone.  But I still have some "nerve" pain in the chest.  I thought that was the implant, but now that the implant is gone, it is still there.  But not as bad as before with the implant.

I am going to try some physical therapy.  But I feel great relief to get the silicon implants out.  Can't believe that I got sucked into the whole reconstructions delusion.  MOre women need to be telling the stories of their reconstruction nightmares.

Anonymous

Monday, All three PS's I consulted quizzed me as to whether my recon had used alloderm. I think, as you say, that involves additional cutting of the muscle than the traditional process of just stretching the muscles. Still, I would think the muscles could be repositioned and tacked back to the chest wall. Can you still flex your pec muscles? Also, I am wondering if your implants still move freely in their pockets (if they were the kind that were supposed to) or if their shape has changed since surgery. I am talking about abnormal shaping or if they've moved higher or migrated to different position.

DeBand

I am 2+ years out from reconstruction following bi-lateral mastectomies and still have low level pain on my right, radiated (2001, first cancer) side. The left side does not bother me. They did a lat flap procedure on the right side: Moved my back latisimus dorsi muscle around to the front.

I have tried MANY things - accupuncture, icing, heat, physical therapy,Healing Touch, massage, exercise, ... I finally found a physiatist who is a cancer rehab specialist. It should not be so hard to find people who can help! Every PS and surgeon should have a list!! I saw a second PS who actually listened to me (versus the woman PS who kept calling me Sweetie). In consultation with the physiatrist, he did a botox shot under my arm. It numbed the non-functional muscle and provided relief. (The shot has worn off, so I'm trying to get another one.)

It's  tough being an advocate for yourself when pain (whether great or small) wears you out. Hang in there and keep asking for relief. 

MondaysChild

shoofoolatte, yes more need to be telling about reconstruction nightmares.  Unfortunately, prior to beginning the reconstruction journey we only hear the positive stories from our health care team. Only after it all goes differently do we find places like this and learn a different truth.

MondaysChild

Tina, I did have a dermal matrix used.  Not AlloDerm, but another option:  SurgiMendPRS. So same thing with the dissection of the pectoralis. I can still flex, more on one side than the other.  The side with the most ability to flex is the side with the most severe pain issue. Also, the implants move freely on both sides.  I do not think there is any capsular contracture if that is the reason for the question, and no abnormal shaping or positioning beyond that which was done at the time of surgery.

LifeAndQualityOfLife

I am desperate for some advice about deconstruction and whether it might relieve my debilitating and increasing post-mastectomy pain. I had a bi-lateral mastectomy in May 2009 followed by left-side radiation. My radiation burns were so severe, that the plastic
surgeon waited until July 2010 to do the silicone exchange surgery.

Shortly after the exchange surgery, my left arm felt a bit stiff, but it wasn't a big deal.  In November 2010, I started experiencing severe headaches and neck pain on my left side. I have had these intense headache everyday but two since November 2010!  I have seen several specialists and tried various treatments. Yet, as time has passed, my pain has progressed to other parts of the left side of my body-- upper back, hips, weakened left-eye vision, and my upper chest wall hurts when I touch it.

My ability to think clearly has been affected and this has negatively affected my earning
potential. I own my own business and am solely responsible for the care of my
two children.

None of my doctors have been able to tell me what caused the symptoms. In an effort to
treat my symptoms I have tried PT, acupuncture, steroids, pain injections,
facet neck injections, a neck epidural, migraine pills and Botox for migraines.  I don't think I am having typical migraines. A few weeks ago, I had a breast MRI to see if the implant was ruptured; it wasn't. Visually, the left implant looks pretty awful (chicken sagging skin, etc.), but
I can live with that.  My PS doesn't think that removing the implant will help the pain.

When I made the decision to have the mastectomy, I believed it was the best option for
me. I had no idea that these type of side-effects were even possible. In my quest to find an answer, I have had astronomical medical bills. I am terrified that I may end up losing my home and not being able to care for my children.  My quality of life has decreased by more than
50% and my physical function is rapidly declining.  I miss working the way I did-love my job. I miss having fun with my children, family and friends.

I welcome your advice and the names of any doctors in Virginia who may be able to help
me.

Anonymous

Life - I am sorry you are having such difficulty. Have you looked into radiation-induced brachial plexopathy? I really don't know much about this myself, but on the lymphedema forum there is a thread about this. The women there (Binney is a good person to ask) might be able to tell you if these are symptoms that would suggest this kind of problem and how to manage. Here are a few links that may be helpful. I wish you the best in diagnosing and gaining relief from your pain. 




http://acols.com/lymphedematoday/?p=580




http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm




http://community.breastcancer.org/forum/64/topic/698235?page=1

Anonymous

Life, I don't want to send you on a wild goose chase. I'm thinking my suggestion may be off target, but your symptoms do seem somewhat different than typical PMPS. Hopefully someone will come along who has greater insight. Again, I am sorry you are having to cope with such pain.

LifeAndQualityOfLife

Tina,

Thank you so much for your insights. I am a research hound, so even if this is not the right direction, I am gaining knowledge that mayhelp others down the road. 

kriserts

MondaysChild, this sounds like me. I have the implant pain, and the nerve pain from a cut nerve under my arm, and like you, have seen a pain management doc.

Because of different issues, I've had my implant replaced a couple times. Always seems like the pain goes away after surgery but comes back within a couple months. I'm in the process of doing fat grafting right now. My intention is to replace the implant with fat after a couple surgeries. I think the PS wants me to keep a small implant, but I'm like--"NO!!!"  I'll try the fat grafting but if it doesn't work I'll just go flat, I don't care anymore. I'm more than 5 years out and I don't want to think about this anymore.

The PS I picked is really good at muscle repair for the pec, so that's something to ask about. And I pointed out the painful nerve and she covered it with some fat in the first surgery. It has helped. At first, quite a bit. Then some of the nerve pain came back, but not at all as bad as it was prior.

MondaysChild

kriserts,

It sounds like you might have made some progress and if so, I hope that continues.  I have never had my implants replaced or adjusted.  They are just like they were done when this nightmare started.  I did have radio frequency ablation in September and although it took a while to settle, it has provided lots of relief.  It is not all gone, but enough that it is now uncomfortable most of the time and seriously painful only rarely.  Before it was seriously painful almost all of the time. 

So at least I have found some treatment option.  I did not tolerate the process of denervation well so have bad pain from that for a while, but after it settled down things have been better.  Unfortunately it has to be repeated every 3-12 months.  I am waiting to see how a tolerate that.  Flat is what I asked for at the beginning of this year but have been made to try everything else first.  At some point I hope it will be allowed to be my decision for my body. 

sandrav

So glad to have found this thread. Too funny when I went into see my doctor yesterday, I complained of this horrible pain from my new implants, he acted so surprised, like he never heard of it. Same thing happened to me where, I didn't want to do anything and everyone told me to try it out. I am having my implants out in December, in  a couple of weeks. I am hoping for 0 pain after the removal. We go through enough, with the cancer treatments of chemo loosing our hair. Sick..and now this.

I wonder why some women are fine with the implants and some get the pain......

FLaG

Are any of you athletes or use your pectoralis muscle a lot?  Maybe just typing on all keyboard a day?

I had my breast implants put in March 2013 and have had pain issues ever since.  I only took 2 weeks off work, which was my first mistake.  The doctor said I needed only one week.  I do a LOT of work on the computer and my chest muscles were extremely soar at the end of my work day.   The pain flares up even more after I've gone swimming or do something that uses my pec muscle a lot...like cleaning.  (even though I gradually started a swim routine)   At this point, I think I will always struggle with this and have decided to do deconstruction.  They think I might have torn my muscle, but the MRI didn't show that.  I just want my implants taken out and my muscle returned to normal.     

Any advice?

Jennie93

I think you will find some good advice here:

https://community.breastcancer.org/forum/44/topic/...

FLaG

My surgeon said that only 5% of women get their implants removed due to pain, but that isn't what I'm finding.

Check out these sites:

http://www.ncbi.nlm.nih.gov/books/NBK44775/


PAIN Pain is one of the significant reasons for implant removal and replacement, although few studies dealing with

local implant problems have involved information about pain.

Some studies have reported that a majority of women do experience pain after implant surgery, and this pain may be

long lasting.

Patients also reported more pain with implants after mastectomies compared with mastectomies alone and with

implants placed under the chest muscles instead of under the skin and breast glands.

A questionnaire returned to one study group reported substantial local pain after reconstruction (up to 50%) and up

to 38% after augmentation. As with other studies, pain was also more common after submuscular (50%) implants

compared to submammary implants (21%), and with saline implants (33%) compared to gel-filled ones (22%).

About 20 to 29% of patients with pain required pain-control medication. Formation of the implant capsule, especially

when the implant is under the chest muscles, may cause nerve compression resulting in considerable pain that may

require additional treatment.

The committee recognized that pain following surgery is not surprising given the damage that occurs to the nerves to

the breast during implantation and reconstructive surgery, which in some cases occurs after injury to the nerves

following mastectomy and, in some cases, lymph node surgery.

Pain may also be an indicator of trouble ahead. Sometimes the implant has to be removed, or a capsule forming under

the chest muscles may result in more compression and pain and lead to more surgical procedures. Much of the pain

with a late onset is caused by capsular contracture, but it can also be indicative of bacterial infections or rupture.

********************************************

http://www.breastcancer.org/treatment/pain/ask_exp...

Marisa Weiss, M.D. The surface around the bone, called the periosteum, is very sensitive. The implants can put a lot of

pressure on the rib cage and can actually depress it, and this is one source of discomfort. Radiation-related chest wall

discomfort is not uncommon. It does tend to ease up over time. It may take weeks or months. It can be made worse by

extra bursts of activity. The muscle that connects the shoulder to your chest, called the pectoralis muscle, is in most

radiation treatment fields and can become stiffer and tender. This type of discomfort responds to regular symmetrical

conditioning.

Some of my patients find yoga to be helpful, as well, because it gently stretches the muscles and tissues of the body, and

it increases muscle tone and helps strengthen your mind's ability to focus away from the pain. It also strengthens the

muscle and improves the tone of the general area.

***********************************************
http://www.breastcancer.org/treatment/planning/ask...

Answers - Kristin Brill, M.D., F.A.C.S. At the time of mastectomy, the surgery extends down to the base of the breast, including the covering of the pectoralis muscle there. For many women, they notice increased sensitivity at the ribcage after mastectomy, particularly after implant placement. It's also common to see sensitivity at the rib with age with anyone. This is something called costochondritis.

FLaG

My PS also told me that removing the implants would resolve the pain.    It's been one week post surgery and I still have the pain, but slowly getting better.

FLaG

I had my implants removed Aug 1st.   I still had the same pain, so they did more tests.  MRI showed nothing.  Pet scan showed costochondritis and pectoralis inflammation.  The chondritis was so bad that the doctors couldn't even touch that rib without my crying.   I've had a cortisone shot for my chondritis and it did help.   Although, it's taking forever to heal.   I'm glad I got my implants out because I don't think I would ever fully heal and would always have issues.    I was never able to swim laps or do hard scrubbing/cleaning without a lot of pain afterwards.   I don't recommend that anyone gets implants under the muscle.   I do, however, think it might have to do with the minimum time I had off work and the size of my implants.  (size D/800cc)  If you work at a computer all day, you should take the full 6 weeks off.  Docs don't seem to realize how much typing effects your pec muscle. 

jeaniept

Hi everyone,

I am so happy to hear from all of the intelligent and sensitive women here. I joined this site many years ago, when I was diagnosed with cancer, in 2009, or shortly after. I had a mastectomy of my right breast in 2009, an expander placed, then a "Gummy Bear" implant put in in February 2010. I tolerated it for awhile, did my due diligence with round after round of PT and at-home stretching, but the thing HURT. It felt like a 30-pound weight on my chest, and I had what I heard was pain from nerves regenerating.

I lived with it for a year, till February 2011, then had the implant swapped for a regular silicone implant. The PS placed it with an Alloderm sling under it, and did some removal of scar tissue. I did PT again, a few rounds, and was better for awhile, but I still had pain.

Fast forward to today, 4 years and 3 months since the last surgery and pain consumes my life. I can't work, I can't do any "heavy" work around the house, I can't carry anything heavy (holding a gallon of milk makes my arm shake if I carry it too long). I have to plan in advance what activities, social and otherwise, I do, around my pain and (always lagging) energy level.

It is VERY hard to get deep and restorative sleep because I can't get comfortable. Riding in cars for any length of time hurts. The smallest bump in the road makes me hurt if I am having a bad pain day.

My quality of life has decreased so much that some days I just cry. I applied for disability but was turned down the first time. (Even though I reported I cannot work because I am in pain and cannot concentrate). I took it up with a lawyer; my trial is this summer.

It's hard to describe the pain to anyone who has not had breast surgery, but I know you will understand..

It's the tight, "grabbing" pain around the implant. The pressure of the implant. The tight band of scar tissue between the implant and shoulder. Tightness in the upper back. Shoulder pain, in he rotator cuff, that I never had before. Pain when I try to do anything that involves the pec muscles: from opening a jar to pushing up off the floor (I am 55 and look like a 90-year-old when I do this.) I used to love to do yoga, but now I have to modify so many of the exercises it's frustrating.

I went for consults a few years back and was told just to keep stretching, do Pilates, take a pool class (I did that; again, so much of it hurt to do) and live with it. All the doctors and PT's told me I could have the implant out but there would be no guarantee of any pain relief.

I am encouraged by those of you who DID have relief after implant removal. Keep the posts coming!

Part of the pain generates from what I believe is the Alloderm sling. I can feel it and even see it in the mirror. I wonder if it can be removed? My understanding is that it is cadaver tissue that melds with your own tissue, so that sounds complicated.

One reconstruction specialist said that the scar where I had a few lymph nodes removed is thin skin rubbing on bone. Again, not sure if that can be fixed. Anyone have any insights?

Thanks, and Goodnight.

FLaG

I can relate to everything you said. (jeaniept) I had another cortisone shot in Dec 2014 . I still have costochondritis pain in my chest, but it's tolerable. It took a LONG time to heal and it's not done yet. Now, I have shoulder/rotator cuff pain as well. I'm SO glad I got my implants removed when I did. I couldn't do anything without having the nagging pain like you mentioned. I couldn't swim laps like I used to. And it was so easy to injury it. I don't think the muscle was really meant to be OVER anything that big. It leaves the chest wall and other muscles vulnerable. (in my opinion) Our bodies create a capsule around the implant to protect itself from the foreign object. Well, I think my body kept trying to fight off that thing. After my experience, I would not recommend big implants (800 cc) under the muscle to anyone. Does anyone know the statistic of women having chronic pain after implants? I wish I was told more facts before my first surgery.

jeaniept, my recommendation is that you get those removed. You've been in pain long enough.

Since I had mine removed and there was extra skin, I am able to do fat grafting.....putting my fat under the skin. I don't need to do the diep because I have the room and skin for fat to be put in with very little incisions. That surgery is very easy and not painful. I've had one done so far. They tell me I'll need 3 total, but I might quit now. Also, if you go this route, about half of the fat that they put in stays. (which is why you need more than one surgery)

Wish you well. I would love to talk more on the phone if anyone is interested.

ronqt1

Hi all, had deconstruction of my right implant in breast on the 29th of Jan. After years of trying to live with the implant, enough. I had to gamble to feel better. Stitches are still in me. Still feeling tender, sore, in muscle area, wearing post surgical wrap and will keep reading your posts. Still dealing with loss of the breast, but waiting for pain to go away. Have to catch up and read your posts. Thank you. I will be 67 the end of Feb and already had ld flap, and diep might not be in cards due to scarring. I thank you for the site. I am not the only one dealing with this.