Tissue Expander causing pain on my rib cage
I am a little new here - had bilateral prophylactic mastectomy with tissue expanders on 3/1/16. Beginning on 3/4/16 I started to get intense pain with certain movements or positions on my right side where I could feel the drain tube and edge of the tissue expander sitting under my breast pocket. I could immediately relieve the pain my sitting in our recliner. Today I went in and they removed my drains (yeah!) and I left hopeful that the cause of this pain had been removed. However, now that I'm home I am getting similar, if not quite as severe, pain in that same spot and it would certainly be the edge of the tissue expander. My TE is sitting on top of my muscle so I can feel it and even see most of the outline.
We did note that the TE is lower on the right side and that does explain to me why it's able to poke into my muscle or ribcage or whatever in that spot.
My TE is really not inflated currently. The doctor put in very little air during surgery so my DH thinks there is a chance when they do start expanding the TEs that maybe it will "lift" off the spot. I'm not feeling that confident. The pain can really take my breath away and limits me in what I can do.
Has anyone experienced something like this or have any thoughts? I see the PS Friday and I'm hoping there is something she can do to move it. I don't know if that's truly possible or not.
Any feedback is appreciated!
Thanks!
Comments
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Jessie, you are still only a little over a week out of surgery. Recovery takes a long time. I had tissue expander pain for about five weeks. I remember feeling like the pain would never go away and I was surprised when it finally did.
You mentioned your tissue expanders are on top of your muscle, but they should be placed under your muscle. Check with your plastic surgeon on Friday. Mine are under my muscle and you can see every bump and outline of the expanders. My right TE also sits lower than my left, like yours. And I could always relieve my chest pain by sitting up.
Long story short, what you're going through is NORMAL. It's a long process and I'd say you're ahead of the game by already getting your drains out. Congrats!
You're doing fine and just give your body the time to heal! Best of luck
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Thanks Veronica31, one night of sleeping drain free was better, but when DH asked if I slept, "OK", I replied that I don't know when I'll sleep, "Ok" but I did sleep better. I think I just have some anxiety overall with what was done and what is in my body. I'm sure I will settle with time.
It took 3 discussions with my PS before we decided to place my TE above the muscle. I believe that isn't the majority of cases, but after weighing pros and cons I chose above. She said she has done it several times for women of similar build to me and really like the result and that cinched it for me. I will be curious to get her overall impressions when we talk Friday.
Thanks for the encouragement. Today was my first day getting up with my kids as they prepared for school since the day before surgery. Kinda nice
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Glad to hear you're sleeping at least a little bit better! I think most of us have anxiety about the process, but it gets better. I didn't know it was even an option to place it over the muscle. Now I'm curious! I hope that works out perfectly for you. Good luck with everything!
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My girlfriend has a TE and has had it for several weeks now. She always wakes up in pain during the night. She says it hurts around the edge of the TE. Is there anything any of you have found that helps with the pain? Im trying to find anything that will help her to some degree. Thanks
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Hi JoeNathen-
Welcome to BCO! We hope you find the info you need to help your girlfriend through this stage of her reconstruction.
We have some information on our main site about managing the pain of expanders, which you and your girlfriend may find helpful. Some of the suggestions include pharmaceutical and non-pharmaceutical options. You can find that info here: http://www.breastcancer.org/research-news/ask_expe....
Hope this helps!
The Mods
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- I had the worst time with the TE. It hurt the entire time I had it. It felt like it stuck on a nerve on my rib cage. It did get a little better with fills. It is tough to go through this process. I am having my implant removed next month and getting a flap surgery instead. How big will you go? I had a reduction so I did not have to have them very long. Good luck.
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Hi Fe_Princess, Gosh it sounds like you have a big change coming with going to a flap surgery. Best wishes for a speedy recovery an outcome from that. Were you dissatisfied with the implant and is that what led you to the flap surgery?
I spoke with my surgeon about one point of pain I was having and she explained that that was the location of a stitch holding the alloderm to my chest wall. She said it was very possible the pain would get better and it has, but if not completely gone she said she can snip the stitch when I get my implants. I'm hopeful, though, this pain will subside as it is much better now. I'm now dealing with a pain under my left arm which prevents me from sleeping in any position but semi-upright. Seems muscular as the PS said there is nothing stitched there, just maybe the edge of the TE. I've tried switching bras today (just the mastectomy style) and seeing if that helps. This is a pain that's actually gotten worse rather than better so I'll have to see. No sign of infection, swelling, etc...
I'm kind of in a different boat, I think. My TEs are above the muscle so I may be able to avoid muscle pain. I was probably a 28 B or C prior to surgery (and that's being generous) so my TEs are to increase size a little. I start expansion in 1 1/2 weeks so I'm not sure how long that process will be or how many fills. Looking at September for implant surgery, but we'll see how this all goes!
Good luck and thanks for sharing!
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had bilateral mastectomy in October & my expanders still hurt every day. I finished with chemo the end of January & because of scheduling issues reconstruction won't be until the end of August. And every day they hurt some days more than others but you know how they ask about pain level from 1 to 10 ? Well the lowest is 4 & that's a good day. Most days it's more. Is this something that other people have experienced! Some nights I can only breathe really shallow because it hurts so much. Just hate thinking of 5 more months of this before reconstruction & some kind of relief .
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hey...
We are in a similar boat and timeline. My prophylactic bilat mastectomy was 2/23/14. I just had my first fill today.... My R expander always hurts more than the left - perhaps because it's my dominant side? Sometimes even just a lightweight shirt or nightie even hurts 😬 I would say you may need more rest for now and see what the PS says. I think I tried to do too much too soon. Are you taking Valium ? That helps a lot with pain as well. And use that recliner and elevate your arms
Good luck
One day at a time
Cathy
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Sorry you are having so much pain butterflykdh. It sounds like it's really affecting your daily quality. I understand feeling that window of time is very long when you are so uncomfortable. Has your PS offered any advice?
It's not even been a month since my surgery so I think I'm still healing from that and getting used to things. It sure is a surreal experience.
Best wishes for comfort!
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I had BMX with TE on 3/9/16 and am having the same issues with pain from the TE. PS did put a partial fill during surgery and I'm to get my first post surgical fill on 3/25/16, which I'm dreading. My drains are out (YAY), but I thought I would be feeling better than I am at this point.
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HI ascovell,
You are about a week behind me. I had BMX on 3/1. It was only last week that I could notice I truly was feeling better. Not perfect, but energy level up and starting last Friday I found I would have some windows where I would forget about my chest for a little while. What a treat! I went to coffee with some friends and until one started talking about her Mom's BC, I had forgotten I was recovering from my own BMX and have those uncomfortable TEs stuffed in my chest. So, I think it will come and those moments will happen more and more. I had my drains out at 1 week but it was still another week before I really felt better, too.
I have my first fill tomorrow. I could have started last week but my DH suggested waiting to allow for ample healing time. I'm glad he did because I was still having so much discomfort last week on many levels - the TEs, the nerves firing off crazily in my chest and still surgical incision pain that I think a fill would have a been too much. Now, although I'm anxious about tomorrow, I have a little anticipation because I feel so much more clear headed and the discomfort level is down.
Even last week although I knew I felt better I was still wiped by the end of the day and couldn't wait to plop in my recliner and open up my bra. Just the mental energy of being aware of my chest discomfort was physically exhausting! I'm not feeling that way at the end of the day since this weekend so I do think I'm continuing to feel better.
For how much pain I had from my TEs in the first few weeks I am still amazed that my body truly adapted to it. I didn't think it would happen and wondered how on earth I could wait through this summer for the implant surgery. Yet, one night I slept without the TE pain on my left side waking me up and it hasn't returned. The pain on my right TE lower edge that was preventing me from even walking 1-2 minutes in my house without gasping and needing to sit immediately to relieve it, is completely gone! That one my PS identified as a spot where the alloderm is stitched to my chest wall. She said she could snip it at implant time if if was still painful. I was like no way will I last until then if this pain doesn't disappear! I can barely walk a 100 feet! But wham, it's gone.
So I hope that gives you hope that it will surprisingly get better and soon. I can't believe how much I didn't understand about this recovery process despite my reading!
Have a great day and treat yourself!
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Hi JessieJake. Thanks for your words of encouragement. I feel so much better this week. The first fill was no big deal, and I had my second one yesterday. At my first fill the nurse in the PS office gave me great advice on the meds to prevent muscle spasms (and dosage so I wasn't so sleepy) and that has worked like a charm. I totally agree with you on the mental energy of just constantly being aware of the chest discomfort. I've had little pain, but have a lot of "tingling" sensations that drive me nuts, especially around my arm pits. I'm starting to get more range of motion back, but am impatient with the length of time it is taking to get back to where I was. I've been doing my stretching daily, and trying to get out of the house for a walk each day. The PS nurse told me this is just a process, and not to have too many preconceived ideas on timelines/dates/etc.
I hope your first fill went smoothly and you're continuing to improve each day.
Take care and thanks for your response! It is nice to hear from someone who is a week ahead of me!
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Hi again ascovell, I'm so glad you've had great success with your first 2 fills! Bonus - no muscle spasms! Just out of curiosity I'm wondering what meds they gave you for muscle spasms - is it a muscle relaxant? I probably already told you but I went above the muscle so spasms won't be an issue, but when I originally had planned to go under the muscle I was going to be part of a blind study where they use Botox at the time of surgery to see if it helps to prevent muscle spasms. Even though I went a different route, I will be interested to find out if that does indeed help.
Ugh, the tingling and other feelings! My guess is that we are experiencing a similar sensation. I sometimes just want to sit naked on top to prevent anything from touching me and making that hyper-sensitivity flare up! I know it's nerve sensations/hypersensitivity because removing what's touching me helps right away. I am a convinced that the 2 fills I've had aggravate that anew. I asked for something and the NP was going to give me Neurontin but she seemed to be talking me out of it with warnings about side effects. I pressed on how bad they were and she said it can make you very tired. As it was, I didn't get the prescription and am hopeful that each day will make this get a little better.
Interestingly, I feel the best when I'm out walking. Why that would calm the nerves down, I don't know. It's more aggravating when I'm just sitting around.
This past week has been very rough. Our family got hit with what seems like influenza and strep. My chest is much more irritated since yesterday. I *think* that all my coughing has made my TEs rub and irritate my chest wall. Geez, one step forward, two steps back along the way!
Waiting 2 weeks now before 3rd fill. Hopefully my family will get healthy during that stretch and I'll be ready for that next streeettttccchhhh!
Best wishes!
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Wow, a virus running through your house sounds awful and hoping it is quickly gone. Definitely the last thing you need. I Totally agree about walking, it makes me feel lots better too. The PS had prescribed diazepam, which made me too sleepy. After a fill I take 1/2 the dosage, then the full dose that first night which seems to work great for me. I really feel better this week, but the tingling is driving me nuts too. I'm hoping this will gradually go away, it makes wearing clothes so uncomfortable at times. Right now I'm getting 40 cc fills weekly, which seems to be okay. I'm a very small person, so this likely wont take too many fills until I'm finished.
Good luck and I'm sending healing thoughts for you and your family!
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I think the tingling will get better because mine is definitely better. So much better that I'm a little sad I have to wait until next week for fill 3. I might be becoming a little greedy. My fills are "only" 50cc (LOL, the NP kept calling it a tiny fill when I was there last. I had to correct her and say it was big for me!). I still have spots in my expanders that are bent because they are under-filled. My greediness is coming from the hopes of seeing those smooth out with the fills.
Despite the setback with being sick last week my chest pain disappeared as quickly as the virus. I even fell asleep kind of laying on my side the other morning. I either use a small pillow or even keep part of my arm under my side so I'm not really laying on the side of the TE. What a joy!
My TEs are 300cc. I can not even imagine what I would/will look like with them completely filled. I'm bigger now than I ever was with only 100cc in each. LOL, I feel like a science experiment.
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I'm a large woman, so I'm going to assume that's why my doc is dragging me through the roller coaster at break-neck speed. I awoke from the mastectomy with the expanders each filled with 400cc already. Only a week later (1 week post-surgery), they were each given another 100cc (500cc total). One more week later (2 weeks post-surgery) he instructed his assistant to give me 100cc on the right and 200cc on the left (600cc and 700cc respectively). I had to back him down. At that point, with the tremendous discomfort I already felt, I told the doctor, "We're done."
He said, "Well -- if you're satisfied..." No -- I'm not really. I just don't want the pain any more.
Best of EVERYTHING to you!
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Nytyngale,
Thank you for sharing your experience! We thank you for joining us here and want you to know we're all here to support you.
We look forward to hearing more from you soon!
--The Mods
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I can sympathize with you. I had a bilateral on 2/3/2017 and right after my first fill I began suffering with terrible pain that has been hard to live with.
I'm finally giving up the reconstruction plan and am having them removed this Friday (4/21). I just don't expect the pain will get any better (after all I've read) and I'm just not ready to spend all of 2017 in pain and on pain meds. Life's to short!!
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Hi Pittsba1-
I just had my surgery on 8/31, which was a bilateral as well, with TE put in. I was filled to 150 ccs and then had 50 taken out to fill more comfortable. I have had 1 fill, which went well. I do not like these TE at all and I think the hardest thing for me was trying to decide if I would to the reconstructive process. I start chemo on Monday, which will last for 5 months. Once I am done with that, I am going to figure out if I am going to have them removed or replace with implants.
How are you feeling now without the TE? Are you back to living a normal life?
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Hi MKGrubs-
We just wanted to welcome you to our community here at BCO! We hope you continued to do well with your TE's, and that your chemo goes well! We look forward to seeing you on the boards!
The Mods
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Hi Pittsba1. I know it's been a year since your post but thank you so much for posting your experience. I haven't found anyone else on all the boards who had so much discomfort they took out their expanders and decided not to continue with the reconstruction.
But that is exactly what I am doing tomorrow. I'm 3 weeks post op prophylactic BL mastectomy, which I'm thankful I did as they found Lobular carcinoma in situ in my Rt breast so with my already high risk I would have been back eventually under worse circumstances. But my TE have caused me severe pain since waking up from the surgery. The PS can't figure it out she said she's never had anyone's who had such pain 3 weeks out and even immediately post op they'd were surprised as the anesthesiologist gave me a block in my pectorals.
Anyway, I, like you decided it isn't worth it to me. Me and my pain free flat chest will be just fine! I have been shocked by how difficult this all is. When my twins were a few years old I had a tummy tuck and thought that was the most painful thing ever. But after 10 days or so I was up and functioning where here I'm 3 weeks out and getting in the shower or putting on clothes is a major ordeal. I have nerve pain I think above the breast line which I'm sure will fade as it's gotten a bit better but the pain I feel where the TE go close to my armpit and the pressure from where they sutured my pecs to my ribs to create the pocket for the expanders/implants is really bad. No alloderm was used for me. I also have 2 fairly large dog ears by my underarms that kill every time I put my arms down.
I'm counting the minutes until they are out tomorrow.
How did you do after having them out? My PS wanted me to know she can't promise I won't feel pain that it may be PMPS. But I'm 99% sure it's the expanders. She did say my pecs were so tight they had a hard time getting them in and due to a previous reduction 14 years ago she didn't have that much skin w good blood flow to work with closing it up.
Thank you all for posting your experiences! This community has saved my sanity during this process.
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I had my double mastectomy in November 2017. Because I was in the hospital twice during chemo (the second time I was septic) the plastic surgeon would not even talk to me for six months. I have a hematoma/seroma on the right side that causes pain when I try to wear my prosthetics. So I don't. Being flat chested is not the worst thing and it is kind of nice not worrying about a bra. Thought I would just add my two cents. I am having reconstructive surgery in September, but I could easily bypass it! Good luck to you Elyssab.
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Thank you for your post! I had expanders places a week ago and I am scheduled this coming Monday to have them removed. The right side is okay but the left side nerve pain is so bad! Everything I have read from people is that’s it was uncomfortable but do doable but I just can’t do it. I will be happy flat and fabulous
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I read your post and felt somewhat better, I swear I hear TE move, last night I swore it flipped which caused horrific pain, just like I had just had surgery. They move when I move and it feels like they are tearing against my rib cage. Had my reconstruction in December this has had to be the worse surgery I have ever had and I've had a lot.Incision on my back is still very painful with every movement, it's still very pink.
Thank you for sharing your experience.
Look forward to reading more post
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Imsuzie I know what you mean. I had the worst discomfort/pain with my expanders for 7-8 weeks. I hope your pain gets better soon!
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My TEs were the equivalent of living with a turtle shell in my chest for 6 months. Pure hell. I don't remember it all but my grown son says all I did was complain. Two things that helped:
Fill slower - don't put so much in each time or stretch out the visits. Made a BIG difference.
Remember the next fill usually changes the position of the TEs so they don't push on that same spot.
This isn't really an active thread. You might try the EXCHANGE thread where everyone discuss in detail everything they are going through every day between BMX and the exchange of TEs for implants.
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