Post Mastectomy Pain Syndrome (PMPS)
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Hi everyone!! I know that even though I had a 1 step procedure & NOT exchange, which I'm starting to regret... I have a question. A yr & 1/2 ago I had the one step (this is where they put implants in u right away, no exchange, but not everyone is a canadaite & NOT every woman wants smaller foobs.
So I've had many issues since then... Major pain.. Fat grafting (they take small amounts of fat cells from ur abdomen & insert it into ur "cleavage" area.) I had this done 2x b/c supposedly the bones r rubbing against my chest b/c I have no fat there. Well to say the least this hasn't been as successful as I'd prefer. My right foob is a little off to the side, but firm .... My left foob is soft (mushy..lol) & way off to the side. He supposedly fixed it 1x, but it didn't fix all the way b/c he didn't secure the side w/ allorderm. So here I am looking for my 3rd procedure since I had the implants. I want the left one moved over & "secure". But b4 I do this, I am thinking that maybe a larger implant would be better.So my question is: has Anyone here had implants (after their exchange) in a while & then had them removed & had larger implants put in BUT DIDN'T have drains? Please feel free to PM me or respond here!! Thx Tink0 -
I know there can be a lot of different reasons someone might be experiencing pain after MX or recon. So I don't know if this will help anyone on here but I had NSM a year ago with TE's/implants last June. I had been in constant pain which only seemed to get worse with the exchange surgery. I just recently did a revision with Dr. Khouri at the Miami Breast Center. Dr. K swapped out my implants for ones half the size and then did extensive micro fat grafting over the top. As a result of that revision my pain is completely gone which I believe is due in large part to the fact that my pec muscles are not being stretched so much and the fact that the smaller implants are so much lighter. I didn't give up anything in size because of the added fat. The only thing I gave up was the pain. I sought out the revision because of the pain issues but it also had added benefits in that my results now look much more natural and I no longer have that cold breast sensation that others were describing. By transferring the fat, and the accompanying stem cells, the skin over my breasts is now warm and feels like actual breast tissue. I also had the added benefit of the fat grafting (lipo) removing some unwanted pounds I had accumulated since my MX!
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Tinkerbell99 - I had pain and much discomfort from my implants rubbing on my ribs, mostly on the right. I Also had smaller implants exchanged for larger to better cover my chest area. My PS tried prednisone injections but that only briefly relieved the inflammation and due to thin skin concerns he didn't want to do it again. He finally decided that the muscle between pec and serratus split and pocket wasn't holding implant. He did a major repair job with alloderm and it is 99% better. I just convince myself that I just have to live with it. It does feel better with a wired bra and I sleep in one every night. Eventually I also had the left side reinforced with alloderm as well. I didn't have drains for either implant exchange and the first alloderm repair did not have a drain, but had to have seroma drained X3. Next alloderm repair I had a drain for a week and it wasn't bad. Hope this answers your questions above. BTW I have saline implants.
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Wow - I'm glad I found this, I have a very weak, painful shoulder on my MX side. I haven't had reconstruction, and am not a good candidate for a variety of reasons. I saw a PT today for an evaluation, he said I have alot of scar tissue, weakened muscles, and these have cause some nerve impingement. He gave me a bunch of stretching and easy strengthening excercises, but I asked him if these could excerbate my LE, he said it was possible, but I would have to figure out which issues I'm willing to live with. I have Stage 0-1 LE in my arm and trunk, so try to do daily self LE massage. I also am taking oxycodone and amitryptiline for pain & neuropathy. I've been doing some swimming and yoga for the pain, but it hasn't helped much. It's driving me crazy, I had my port out last week, yippeee, which means the doctors all believe that my cancer is gone and I should be happy, but.....living with the pain is exhausting. I'd sure appreciate any ideas on coping with this. I'm considering taking a pain management class, has anyone done that?
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Thoracic outlet syndrom...Anyone dealing with this? I have a heck of a time sometimes on my bc side. I had a bilateral mastectomy but the bc side has a lot of scar tissue. I was also radiated half way up my neck because of supraclavicle involvement. The scar tissue gets exptremely tight and causes issues from my neck to the tip of my fingers. Stretching helps.
Any one have similar issues
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kitkat....I have been researching the scar tissue dilemma. I am a proponent of fat graft transfer for post-radiation complications and for repair of post-mastectomy defects. A BH doctor has apparently found success with this....
http://www.stem-cell-lift.com/post_cancer_stem_cell_reconstruction.html
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veggiegal - thanks for the tips. I only do breast stroke when swimming. The OT and PT both showed me different massages to break up the scar tissue. It seems that the tissue just gets tighter. I haven't had ultrasound though, maybe I'll talk to him about that this week. Right now I'm doing his exercise program and icing my shoulder. My insurance only pays for 20 PT/OT visits a year and I've used most of those visits up going to the OT for LE, and I don't have chiropractic coverage :-(. I need to get the best bang for my buck. He did test mobility, I have fairly good ROM, but it's painful. I was told to limit my lifting with that arm to 10lbs or less. The shoulder issues were definitely made worse by the radiation, prior to that it wasn't bad.0
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I had my BMX on the 29th and it feels like anything I wear makes my skin feel chaffed on my side and under my armpit on the cancer side. I have pain in my armpit mostly at night. I hope it goes away or at least lets up. How long did it take everyone to stop hurting?
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Alliesmom15, I had BMX in early April, I had that "chaffed" sort of feeling for about 2 months. At first everything I wore felt like sandpaper, no matter how soft it was. Also had the pain in the armpits. One side resolved in about 5 weeks & the other is very slight 10 weeks out of surg. I was really concerned about my slower healing side. I had cancer on both sides, so probably not the cancer? At least for me. I was also told I would notice a difference & feel better each day, not exactly, but I did get there. I had no reconstruction. Hope this is encoraging. Because I also thought I might have the Pain Syndrome when I didn't heal as quick as I expected.
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My right side where the cancer was is the one that hurts, the left feels fine, little sore but healing nicely. They didnt cut into my armpits on the left either just the right. Scary that there is such a thing as the pain syndrome, hope it feels better eventually.
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swimming season is back... and I noticed last week that I have a LOT of trouble pushing myself up out of the pool on to the side. When I try. I feel extreme weakness in my shoulder joints, like I'm going to collapse on my face on the concrete. So I'm using the ladder to get out.
Sheesh. Bit by bit I've come to realize my body is trashed.
Anyone with lat flap surgery find sitting for long periods of time difficult? How much of the lat dorsi muscle have they removed? I've been told it would have no effect, but my posture is worse, I find my shoulders hunched from constant pain... the only thing that helps is percocet and that is a problem.
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Bumping for mycinnamon
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I understand i have posted here and other places. I had the hot wire across my chest. It started below scar and over 2 years has moved up to above scar. PS tell me in 3 year it will be gone. She helped me find pain Dr who compounded cream to go right where pain is. I can not tell you how much it helps. Ask for compounded pain Rx. It does not go through your body to make sleepy etc. It is good for about 6 hours then re-apply. Some doctors do not know the lastest in Rx that can be compounded.
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I too have had a lot of pain and had a hard time finding a doc who would acknowledge it or give me answers. I think the pain has changed over the 4+ years since mastecomy (lymph nodes removed, chemo + radiation, frozen shoulder then lymphedema developed). For a long time I was on a low dose of vicodin. Finally the pain seemed to seperate into a section under my arm, and the discomfort of the implant. At that point a pain doc was able to help me. The pain under the arm is from a cut nerve that's trying to grow together but is wonky, it feels like a little knot. He gave me first lidocaine patches, and then a cream, and that has helped. He suggested a snug wireless jog bra for the implant discomfort, and that's helped a lot, too. I'm flat and all squeezed up but much more comfortable. I hate the implant, but strangely enough, I find when I'm really active--lifting weights, doing a lot of long bike rides--I feel better. Maybe it's the summer weather or the endorphins. I freelance, so maybe when I'm stuck at a desk all day long my body just gets stiff and I feel the implant more. OR maybe time is just working its magic.
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I couldn't believe the burning, "flu-skin" sensations that went on so long after my BMX. But suddenly around 5 or 6 weeeks, I noticed it had subsided. I am now 3 months out and actually pretty comfortable. I have been doing a lot of stretching and arm exercises (lat pulldowns) and lying on my back trying to do snow angels. Snow angels actually do still hurt a lot, but I had (unrelated) shoulder pain prior to surgery which I had mostly gotten rid of with exercise and stretching, so I think perhaps the current pain is that I had to take several months off from working out. Ditto on the swimmming issues though. A year ago I could easily swim a mile freestyle. Now i can only do a few laps freestyle. I believe in my case at least that I regress if i don't exercise, so I just have to get in there and do it.
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By the way, what are people's experience regarding the difference in discomfort between the mastectomy surgery and the (later) implant surgery? I have expanders in but am dreading the implant surgery. Is it as bad?
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Regarding the implants, the surgery itself was okay. But I feel a lot of pain from the implant itself. There's another thread on this board about women who decide to take them out. The docs won't admit it right away, but now that I've been complaining for a couple years, they're saying that some women just don't tolerate them well. I found a government study online that said a fair percentage of women ultimately have them removed. But it's probably personal. My sister has one and is fine with it.
I can't remember the difference between the implant pain and the mastecomy pain. I had complications and had to wait for the expander/implant. I developed a frozen shoulder in that time and had shoulder pain. Also, the skin on my chest was sensitive and I remember thinking that the implant helped that.
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k8sonny - I found the exchange from TE to implant was very easy to recover from. My expanders were causing ALOT of pain and when I woke up from the exchange surgery I felt an instant decrease from the previous pain levels. I hope you find the same with your exchange.
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Bumping...
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bump for ked....
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Thanks again, mycinnamon!
This is a great thread -- am so happy to have found it. I had a lumpectomy on 5/18/11 with unusual amount of pain following . . . started to get better, but I then began radiation, which re-triggered all the pain.
I'm lucky in that I got a referral by my RO nurse to an OT who'll be working with me on this and who takes it seriously. I do like my doctors who are very empathetic, but they seem not to know a thing about chronic pain following surgery and during radiation.
Btw, the OT was wondering whether I was in the early stages of CRPS, Chronic Regional Pain Syndrome. It seems, though, like diagnosing these pain issues can be kind of fuzzy.
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ked329 - my chronic pain was eventually dx'd as CRPS but that was after 18 months of constant pain...thankfully after the official dx and rx we were able to manage the pain to a point where I no longer hurt all the time. How awesome that your doctors take you serious and are willing to help you get to the bottom of your pain issues. I hope you find relief soon.
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Where is everyone from this thread? i have armpit tightness on my mx side,that has not gotten much better with pt for over 7 months rom is much better but tight armpit is awful and my armpit is hard i can feel the tendons or muscle whatever it is. i do not want to live this way does anyone know what i should do? im waiting for an MRI ,will that show anything ??so sad
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Beacher I responded to your PM
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While researching this topic, I came across this scholarly article regarding trials of using fat graft transfer to relieve PMPS - performed with considerable success.
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Fat grating should be standard with all the benefits if offers, shouldn't it?
whippetmom - Is there any difference on what type of fat grating you get ... I'm pretty ignorant of this topic so I don't know the proper terminology ... but is the micro-fat grafting (like what Dr. Khouri from FL does) and the 'regular' (don't know the proper word) fat grafting ... do they get the same results as far as the pain (like the article you posted) or is one preferable over another in regards to the benefits for those with radiation and PMPS? I know the Dr. Khouri method is preferable in terms of aesthetic results but I'm wondering if Dr. Khouri's method is preferable over the 'regular' method in terms of what you're posting here (in reducation of pain). Hope this makes sense!
I guess the bottom line is: If my PS doesn't do micro-fat grafting ... is it still worth it to get the 'regular' fat grafting? Are both methods of fat grafting beneficial in regards to reducing the pain of PMPS?
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Whippetmom, thank you i mad a copy of that article,i am trying to gather as much info as i can on pmpp ,I am being directed diffrent places for this problem some have suggested cording, and maybe crps, Im am not the brightest on any of this but thought if i had actual written articles someone would help me... But that is my question Who do i got to first? My ps seems to not get it at all,so i was going to get a 2nd opion from another ? Or should i see my onoclogy Dr. Or Surgeon who did mx ? I forget all the abbrv. could you all direct me to that thread. Thanks for all you do
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Thanks o2bhealthy got your pm,made a copy bringing to whoever will listen and help
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beacher: You need to get a referral to an anesthesia pain specialist. An anesthesiologist who deals with pain issues. I don't get why these doctors act as if they have never heard of this. Heck, it has been a known and documented complication and diagnosis for thirty plus years!
http://www.medscape.com/viewarticle/715640
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Dawne-Hope - Fat grafting is all the same. It all depends on the refinements to the fat [e.g., harvesting stem cells from that fat, as in what Cytori Therapeutics is doing] and the amount of fat taken for the purpose intended. It takes far less fat to fill in a step-off deformity than it does to create a presentable mound on the chest wall, the latter representative of what Dr. Khouri is doing. I think it is pretty darn marvelous that our own fat which we might have abhored for decades, can give back to us when we need it most.
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