Still Uncomfortable with Implants

jenlee

There are some women in the DIEP and NOLA threads who had complications with implants (or even TE's and didn't make it to implants) and have moved on to autologous tissue (flap) reconstruction.  Perhaps that's a consideration for those who aren't finding relief.  Not sure how that works with insurance, but I'm sure you could find someone on the threads to ask.

mlp730

Unfortunately, I still have pain after deconstructing. Right now, I am going to a pain clinic where they are playing around with medications such as Lyrica, methadone and Cymbalta. I will say that I've seen some improvement and just that. I'm nowhere where I want to be but I now, after 3 years, can wear a bra. The pain was so intense that wearing a bra was like putting a bra on an already iron bra - just terribly uncomfortable.

I had a bilateral mastectomy 3 years ago and never dreamed that I would still be talking about pain and discomfort. It's so frustrating because like most women on these boards, my PS and BS both minimized my pain to the point where I felt I was crazy. I have so much comfort and companionship here in knowing that I'm not crazy and that this is real. Breastcancer.org has truly been my best support group!!

PinkHeart

Botty~

In my case, I have had overwhelming pain RELIEF from removal of my implants.  They were a nightmare from the get-go.  I've had 5 surgeries and my 6th in December should be the last. 

I found pain relief and success FINALLY from a microsurgeon (Dr. Kline-Charleston, SC).  When I went to him I was already missing my cancer side implant that had failed and made it's own exit through my skin and had to be removed urgently in my city. 

I chose to have bilateral SGAP natural breast reconstruction (Surgery #5).  Dr. Kline worked for several hours first meticulously removing all the implant (and prior plastic surgeons) torture I lived with for a year.  I had radiation damage, craters of scar tissue and chunks of AlloDerm adhered to my chest that took a lot of work as well as repair of pec muscles and my axilla.  After that, he continued with my natural breast reconstruction, which was very successful. 

The next morning when he came to visit me bedside, I couldn't help but have a huge smile.  Oddly, I was definitely in surgery pain, but I was smiling because I could already tell that my pain from breast implant torture was gone.  And it still is gone after 10 weeks post op. 

The only pain I still have is my axilla pain from the severe, refractory axillary cording that I developed as a result of my lymph nodes being removed during initial surgery last year.  I also have lymphedema.  At my next surgery (Stage 2 SGAP), the contouring of my breasts will be done, fat grafting, addressing the cording issue, and then lymph node transfer to help with LE relief.

There should not be any problem from an insurance standpoint.  (BTW-Dr. Kline takes most insurance)  http://www.naturalbreastreconstruction.com/kline.aspx

All the best to you and all BC patients suffering from this implant reconstruction-turned bad ordeal.  Please stay strong and don't give up seeking help for a better quality of life and relief from pain. 

jessicav

Thanks Kate. Great advice as usual. xo

Anonymous

I had been keeping a rough tally for a while of those who got relief and those who didn't after having their implants removed. At first it looked like most had relief. Since a few recent deconstructions, the tally seems to have dipped to almost 50/50 chance of relief, which as far as deciding on surgery is not a number you want to hear. I think it really depends on the type of issues you have as well as how the surgeon handles the deconsruction. There's also individual circumstances and plain dumb luck involved, I believe. I had a similar situation as PinkHeart, lots of scar tissue and capsular contracture, implant poking through muscle, as well as pectoral muscle damage that was repaired. I also went to Charleston but used Dr. Massey. Both doctors are excellent. There are several other woman who had relief since I had my surgery, but they don't seem to hang around much anymore. The couple of ladies who advised me on having surgery and had relief don't seem to be here either. However, as PinkHeart has said, a number of ladies who couldn't handle expanders or implants have gone directly to autologous tissue transfer surgeries. There's only one gal I can think of who had this process who still has pain, but she had a complex case that included symmastia and was quite an ordeal. So if the women with implants who have pain go directly to autologous fat transfer and don't discuss here, then I have no sense of how many more actually get relief from implant removal and deconstruction.




A friendly wave to Jessica. :-)

EileenKaye1

Tina--I had a tremendous difference going from a 410cc to 213cc Implant with fatgrafting.

Hoping for complete pain relief when the implant is totally removed.  Will let you know.  Eileen

ronqt1

After all this, I believe it it is the scar tissue and cording that causes the problems. After pain management, savella, lyrica, injections, I do feel better. I thought I was going to be injected again when I went for postop PS visit. He said he injected me during surgery (kenolog) and will do it again in two weeks. He did say quite a bit of scar tissue was removed. For a doctor I was so angry with, he came through.

So after all this I still have my implants, but the scar tissue minimized and/or gone and God willing no more pain. Just the cord feeling on mast side when I lift arm and still very tired. I am back to sleeping in a night bra (temporarily). Just still recuperating.  When I lift my right arm I do feel that cord or attached feeling.

I am now one week and two days post-op and feel very good. I do think if I had the implants removed wouldn't the scar tissue still be there. I am glad I did not deconstruct.

Love to all and of course sympathize with everyone in pain.

SyrMom

Ronna,  I have found PT to be very effective with cording.  The majority of physical therapists will tell you even the most skilled PS is often clueless to the positive results of PT.   Of course, you'd want to see a therapist skilled in lymphedema (even if you don't have it).  I had PT on each side and it made a huge difference.  Good luck & glad you are feeling better.

P.S.  I waited between 3 -4 weeks following surgery so I was fairly well healed before starting PT.

amac645

Tina337, thanks for "keeping up" with the post implant relief.  What valuable information.  For whatever it's worth, I'm about 6 months post TUG/PAP and couldn't be happier or more comfortable.  I just had my stage II and LOVE the results.  I look good, I feel good, I feel "normal' -- all in all it was totally worth it.  I just HATED those implants and am so happy to have them out of me.  There is nothing to compare to feeling as close to the real you as possible.  I hope all of you ladies find relief soon.

Andi 

11BC

Hope this finds everyone well. I had a bilateral mastectomy with reconstruction and radiation. Four years out, my radiated breast has capsular contracture. I plan to have both implants removed. 

My plastic surgeon tells me it will be one to two weeks for recovery. I could most likely go back to work the Monday after a Friday surgery, but I will be sore and swollen.

Has that been your experience? Has anyone had their lymphedema get worse after having the implant removed? (I have lymphedema in my right, cancer-side arm. It's manageable now).

Thanks a lot.

Anonymous

11BC - I had truncal LE and inklings of arm involvement when I was deconstructed. I had MLD done on chest and arm a couple of times in month before surgery. Post surgery I scheduled MLD sessions Mon-Fri for two weeks and it helped keep swelling down. I did have a flare from surgery in chest but it eventually stabilized. I can't compare measurements because old ones were with implants, so all I can do is compare how I am now to immediate post-surgery measurements. I want to say more, but I am pooped tonight and need to sleep. Dr. Massey did a bunch of preventive measures pre-op, during surgery, and post-op. If you do a search on BCO, you will find I have rambled on about this a lot! Feel free to PM me if you want.

11BC

Tina337: Thanks. I just emailed Dr. Marga Massey to see if she takes my insurance. It looks to me that since I have lymphedema, I'd be better to plan ahead and do preventive measures before the surgery.

I'm not able to take the time to do the prep appts and surgery now, but may be able to do so this summer.

Thanks for the suggestion to read your other posts. Hope this finds you well.

jessicav

I had my implants removed and am still in pain. Although, it does feel great to have those aliens out.

I learned that after having the implants removed that much of the pain was as a result of nerves being cut or damaged during the original mastectomy/recon surgery which happens often. Then, they put the implants over all that and it just seems that the body cannot properly heal with those implants over all that damage. It's common sense. I do feel better but still have tremendous pain. I think from cut nerves and who knows what else because no one tells you anything. I hope this helps. The damage can be done during the mastectomy and then they do the reconstruction on top of it which just does not make sense to me since everything is all cut up in there. The chest is shredded and in shock and needs to heal. Some women seem to do better than others but who knows why...and why don't they tell us in advance this could happen so we can make informed decisions about our own bodies.

Tina, Eileen, Kate...thinking of you. Been off the boards for awhile. (:

sandrav

I am so sorry to hear of your pain.. gosh

I had a double massectomy this last Jan. and had those awful expanders in, until this last Sept when  I had the implants put in. I have a surgery sheduled in Dec. to get these damn awful huge over 600cc things out of my chest. I do hurt very much and picking up anything causes me to spasm, and I feel them against my inner chest..ick 

My insides where screaming before the masectomy to not do anything, but perhaps I needed to walk this journey for any future regreats. 

I am scared to have this last surgery, everything this PS does is tight. 

jessicav

Sandra,

You might tell him not TOO tight. Tell everything feels tight. There is no benefit to wrapping you up so tight. It's hard for me to take a deep breath because everything is soo tight. I just do not believe it has to be this way. Many women do not have this problem. You might tell him that your "quality of life" after the surgery is of utmost importance to you. Yes, we are happy to have cancer removed. But if the technology and skill exists to have us lead comfortable lives afterwards, especially after all we have been through, than why is not?

Erica3681

jessicav, I'm sorry you're still in pain after your implant removal. Have you been referred to a good physical therapist, one who specializes in breast cancer patients? If not, I highly recommend that you try to find a qualified PT, especially since you're experiencing a lot of tightness. My PT used very gentle myofascial release techniques for tightness after my mastectomy and it really made a big difference. I realize you've just been through quite a trauma, deconstructing after having pain for so long, but hopefully physical therapy could help loosen the tightness and perhaps even calm your painful nerves.

Barbara

mlp730

I haven't been on these boards in quite some time. The pain that I feel for all of you makes me realize that I'm not crazy. I have this same tightness that takes your breath away. I've been seeing a pain specialist as well as many PT's including LE specialists but the pain is still is so intense. I'm at the point of just not knowing where to turn but there has got to be something that gives us some relief. I'd just like to wake up one morning and feel a little better than the day before.

Maddie57

mlp30- If I am not mistaken you have had your implants taken out? We have what is called a "Pain clinic" in England. One of the things they do is inject painful areas with a cocktail. We do a lot of work on the back - facet joints etc, but we did have a patient who had terrible pain behind her ear after the removal of a cancer. Nothing seemed to help, but one bright Dr suggested injecting the actual scar.This has been very successful. If this pain is from cut nerves it may help - it's worth a shot!

PinkHeart

Maddie~

Are they injecting Botox?

I was fortunate to get a great deal of relief from implant removal.  My microsurgeon worked for 2-3 hours repairing damage to chest wall, and removing scar tissue.

I still have pain in upper pec that connects to shoulder/axilla.  Working on it with PT.  It's really painful today because I have been cutting evergreens and making wreaths to decorate for holidays.  Was over reaching without stretching it first. 

Maddie57

Hi PinkHeart - no it is not Botox they inject. One ingredient is a steroid, and another is local anaesthetic, but not sure what else is in it. Hope your PT works for the pain you are experiencing.

EileenKaye1

with second surgery--I went from a 410 to 213 to a 120cc implant with additional fatgrafting.  tremendous difference in cosmetics, lymphedema(is gone) and muscle discomfort is 90 percent improved.  at next surgery will ask for additional scar removal--as I feel tightness under the arm--could not be the implant as the implant is at my midline.  smaller implant with fatgrafting has done wonders for me--best of luck--keep in touch.  eileen

sandrav

I am so Thankful for you all.

How are you all doing making your Thanksgiving dinner. My old get up and go seems to have disappeared for now I hope. My family wants their mom and wife back.

Jessica have you started to feel better yet? Any relief in your recovery? Gosh I am so sorry for the nerve pain..and well pisses me off too, as I wonder if you didn't go this route if you would still have the nerve pain. I am so scared that mine is nerve or muscle pain..

Everything behind the implants hurts

mlp730

I actually did have the scars injected with botox. Unfortunately, it was alot of money for no relief at all. And yes Maddie57, I did have my implants removed a year after my bilateral mx (last summer) hoping that was the answer. I still am experiencing so much discomfort. My pain mgt dr. is still playing around with doses of Lyrica. I just started taking 300 mg a day. I don't feel a big difference yet but I can at least wear a bra for longer than 10 minutes!! If we don't see alot of improvement, the next step is to do a trial of a spinal stimulator. Has anyone tried this?

janhart

mlp730, so you are saying that removal of the implants did not take away that constant tightness and squeezing feeling? Is that the result for any others here who have had their implants removed?



If I knew I'd have instant relief, I'd remove them in a second. Unfortunately, I'm reading that isn't always the case. I'm understanding that it is more like scar tissue and nerve damage causing the pain and tightness. I did 3 months of PT which helped my range of motion but brought no long term relief. Has anyone tried ASTYM which is a type of PT performed with acrylic tools to break down the scar tissue. I'm going to try a pain management doctor that Whippitmom recommended, but I do not want to take meds for the rest of my life for pain management. Ihave not heard of the spinal stimulator, but will check that out. Wishing better days for everyone here.



Jan

mlp730

Yes, that's what I'm saying unfortunately. I still have the iron bra feeling or like I have a theraband wrapped super tight around my chest after deconstructing. With everything that I've read, I feel certain that my issues are also nerve damage and scar tissue. I'm now experiencing pain down my right arm. I'm not sure what this is but it feels like when you sleep wrong on your arm.

As I mentioned before, my pain mgt dr. has suggested a spinal cord stimulator. If you are not familiar with it, it works to interrupt pain impulses before they reach the brain replacing them with a soothing feeling. You wear what looks like a small remote on the outside of your body as a test for a few weeks. Your pain has to be improved by 50% or better before my dr. will consider inserting it. The device gets inserted into the butt if you choose to go with this. It's done as a one day outpt procedure.

Anonymous

It's so disheartening to see familiar faces on here still struggling with their implant issues and see new members as well.  I wish we had some answers.  I'm still researching from time to time trying to see if not a solution at least an acknowledgement from the medical community that problems do exist.  I came across this article recently that is full of interesting information and wanted to pass it on.  (I have fibromyalgia so the section on auto-immune issues was particularly interesting.  It was a small study but 97% saw improvement in their rhuematological symptoms by having implants removed.)  What really bothered me, though, was it stated there have been over a 100 studies of women with implants but the majority of them were funded by implant companies and medical associations with a financial interest in the outcome.  

http://www.center4research.org/2010/03/breast-implants-a-research-and-regulatory-summary/

Ginger48

Kate33- thanks for the article. I was diagnosed with fibromyalgia about 9 months after my exchange to implants. I found the info in the article disturbing. Makes me wonder if removing them would make my symptoms go away but there does not seem to be a clear cut answer. Wish I had a crystal ball...

Anonymous

Ginger- I was thinking the same thing. Though I've had fibro for almost a decade the symptoms increased considerably as soon as I had the implants placed and have gotten progressively worse ever since. Every doctor I've consulted with, though, discounts the auto-immune/implant connection. Wish I had that crystal ball, too.

Trina25

Wow I really don't like the idea of the implants , I am 25 with a nice shape and am happy to say I am all natural . But know I have to lose my boobs, I feel like immediate reconstruction would b best. I've dealt wit the hair loss and am dealing with the weight gain but I don't think I could wake up everyday and see nothing on my chest . I would like to do a flap of sum sort so it can be me n I still feel natural. The tummy tuck aspect is awesome and definitely has me leaning toward that, but idk if I can do a longer recovery time and then that's two areas recovering the breast and the abdominal area. I still have 3 rounds of chemo waiting period and my surgery I need to make a decision . And I hate the fact that I will have to have revisions later because fake boobs aren't meant to last forever .

Hindsfeet

I didn't want to come back here, but I'm desperate. I need a little help. My reconstruction is done. The surgeon made me larger than I asked. I'm not happy with it, but would be willing to live with it if it wasn't painful. The implant is too tight, and hard. It is pinching me underneith the arm pit, especially when moving my arm, which is most of the time. I have shoulder and arm pain...like a tooth ache. I' feel like I'm being squeezed, and often it's painful. Because the implant was larger than my natural breast the plastic surgeon put a implant in the good breast. Now the good breast is larger than the other one. I'm scheduled Dec. 18th to have the natural breast implant removed. My plastic surgeon is good at what he does. He's probably a little frustrated with me. He's not sure what to do, and neither am I. From what I've read here a smaller implant with fat grafting might resolve the pain problem. The thing is he doesn't do this type of surgery.

So...I'm looking for a plastic surgeon in the northwest who does the micro fat grafting. There is someone who does it in our area, but doesn't take insurance...cash, or care credit. I would love to get it done before the first of the year because I' have no more co-pays. I'm completely covered until January. Let me know if you know anyone in Oregon or Washington, who does fat grafting and takes insurance. I've called a few places, but they don't do the kind of micro fat grafting that's done with Dr. K in Miami.

Trina...read your post. Sorry that you have to lose your natural breast. You are so young to be going through all this. Tough choices. I had 3 months to make a decision and looking back, I wish I had more time. There is a lot of good information and support here on the reconstruction threads. (((hugs)))