TE TROUBLE
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Thank you both very much. GREAT to see familiar faces. That brings me comfort.:)
My major concern is the way I'm feeling- no temp, but I have severe pains in my chest and where my lungs are behind my back....It is SO painful and I have fluid around those areas. It's a buring, stabbing feeling when I breathe. Not Fun.
My shoulder feels heavy and like I can hardly use it on that side. It's a bizarre feeling for sure. Trying to get until tomorrow so I can be checked out, but something feels "wrong" and I've never experienced pain like this since mastectomy.....so I hope all is well and hope my body is absorbing it correctly. The pain is intense when I breathe. I am a little depressed about the way things turned out, but I know God has a plan, and though I didn't get through this part, I pray I get through the next part. I was told anatomicals are best for systemic lupus because less likely to reject due to the shell made of a fuzzy type of cover that will also not adhere to scarring and other issues. So that's good news. My surgeon went over all of this with me. I have to admit, I'm scared, since this is my THIRD time being put under in just 3 months.....it's like a monthly thing now.
I pray for the best to get past this and NOT reject the implants....and I am sure I will learn to love my new breasts once I get them.
I pray for all of you and hope you get past the trials going on with you too. My TE's are the M133 or something like that......I have heard that the MOST malfunctions can come from these kind of TE's. I guess I was at bad odds to begin with. lol.
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Surgery is today at 10:15am....getting Natrelle style 20 high profile implants anywhere between the 8 sizes my PS ordered: 275cc-450cc (whichever fits best and looks good).
Not scared anymore, but more ready & excited to get this 100% ruptured expander out (having pain where my Allomax is located and the port hurts badly because it looks like a Baggie that someone sucked the air out of but left a donut inside) my left side is painful and I'm looking forward to having scar removal from the cellulitis and have my implants (no matter what size).
I may not have "expected" this path, but this is where life took me, and I know I'll come to love the new ME, regardless of "size" because I learned to quickly love the flat chested me since 9/23.
I rocked those drains for 45 days, they became my friends (my bacteria eliminating friends) and never wore prosthetics. I loved me for ME, and learned a lot through this long painful (literally painful physically) process. I've helped others, saw myself differently for once, had many sad moments but never fully lost sight of my goals and love others along with love life so much more. I live today like its my last; if I should be granted a new day tomorrow, I'll live that like its my last also. Life is precious, and this road is so tough sometimes, but we all have a plan, & it's above our power to rule it. Make today count for everything & let go ofyesterday's burdens so that you can love, laugh & most of all LIVE happily today.
Marie J Mello
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I have not posted for many, many months. I made up my mind when I was diagnosed I wanted to be positive, not post things that might scare others or make them worry when I had problems. However, I find myself in need of some comfort more than anything.
I am really sick now. I have MRSA. I am getting IV antibiotics twice a day. The pharmacist cut my dosage back saying I was getting toxic. Now, it is too low and I have elevated temp and very sick again. So, back on high doses today. I have had implants twice on the right and once on the left side. Left side no problems. Right side, more problems than I can post here. I will not be continuing any further with reconstruction, I don't have the stomach for it anymore.
And again, I don't want to be negative. God has been so good to me and I know that know matter what in the end I belong to Him. THIS I KNOW! I am just in need of some encouragement from anyone who have experienced MRSA. If you can tell me how long does all this take, when can I expect to be well and get on with my life. My mastectomy was in April 2014 and I need some good news!
Thanks!
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renee - so sorry that you are so ill! I hope you feel better very soon - I have no words of wisdom other than to say MRSA does seem to be a disease of degrees - you can get a mild case or an intense case - just like chickenpox. I feel so badly that you seem to be on the severe end of the spectrum. I do have a friend who had a fairly mild case (we worked together in a hospital) and was concerned when she was dx'ed with BC, but when they swabbed her for MRSA prior to her surgeries she did not show positive. I understand your discontinuing with recon - there come a point when you have to say uncle. It is a difficult adjustment, I have been living with a non-reconstructed side since May and I am more used to it now that some time has passed, but am still pursuing recon. A lot of people have asked me why, and I don't have an answer other than to say I am not ready to give up yet, but I feel like I will know if that time comes after this experience. Wishing you the best and hoping you turn the corner soon.
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SpecialK, Thanks so much for your response. I was admitted to the hospital shortly after I posted on this site. My temp went up and I just could not get it or BP under control. Turns out to be a good thing. Picc line is out, vancomycin was stopped because I had a failed trail. So, now I am on zyvox oral dosage. It has side effects but I am hopeful this will knock out the MRSA and I can get well. I have had 2 doses so far and already feel so much better. Insurance never wants to pay for these expensive drugs, but once you are admitted to hospital, giving us the medications we need to be well at home, is so much cheaper in the long run!!
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Renee, so sorry you have to go through this. Hugs.
I had a couple of infections. Had pick line and used my port. Gave myself the daily abx infusions at home. For 3 weeks. Then onto oral for another 3-4 weeks A couple of times. I had MRSA one time but it had nothing to do with BC. I actually had it in a place won't mention! LOL. Let's just say I couldn't walk..... LOL they had to use a sulfa drug for 6 weeks. You will get through this
I kept going through reconstruction because I wanted o have a knee replacement. My ortho would not touch me till he saw me keep an implant. But finally, SUCCESS! So I wish you luck.
Much love.
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Renee: I hope your MRSA infection is finally under control.
I haven’t posted since my PA removed 50cc of my 12/2 fill on 12/19 due to pinkness in the upper area of the right breast. After several rechecks, it was decided not to put it back in. The PS wanted to go ahead with the planned exchange on 1/21 only filled to 200cc. I’m 5’2”, 105#. I asked many questions at the pre-op but could not get answers to many questions. I delayed the surgery and the PS did respond with answers to some of my questions but continued to decline to allow healing and attempt more fills. She would have attempted a fill at the exchange. I decided to get 2nd opinions and have done 2 so far.
At today’s 2nd opinion the PS said that the TE on the right had rotated and that’s why PS didn’t continue fills. He feels there is plenty of skin to fill again and see where it goes. If it doesn’t fill the lower pole, they won’t attempt any more fills. PS said in any case there will be a lot of pocket work. There is a big tuck on the right that he just can’t guess what it is, how to fix it if it can be fixed until he gets in there. PS said that to get this to look good will require several surgeries. This is my 2nd attempt at TEs due to initial infection. Has anyone had experience with TE rotation?Thanks, Mary
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My right TE is rotated and shifted. I'm still able to complete fills without any problems.
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Noonrider: I've been following your story for awhile and you have really been through it. Didn't know that your expander was rotated and shifted on top of everything else that you have been through. My right lower pole is not filling but the new PS is going to try again and see if anything will go down there to stretch that area a bit. If not, then we'll move on to another plan. Hope you are recovering from your most recent surgery!
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Hi Ladies. I had skin/nipple sparing double mastectomy on Dec 18th. About 3 weeks later my right side developed a terrible infection and I was hospitalized for 8 days on Zoysn & Vancomycin. The alloderm & expander were removed. The PS said that I will need to now look at diep or lat flap because the skin is just too thin on the right side (this was the Cancer side and I was told my BS was more aggressive in removing tissue
). Has anyone been able to put another expander in after a bad infection and having super thin skin? Or should I start to plan on the tissue surgery?
Thank you for any help or insight.
Blessings
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SA8PG - I lost an expander after skin/nip sparing BMX not due to infection but to a very thin area that had necrosis. My skin just would not heal and close with a foreign body under it. This was not over incisions but an area that split open on the front of the breast. I needed to heal and proceed to chemo so we had to quit trying to save the expander. Once the TE was out I did heal with no issues and did go on to have the TE replaced about 7 months later, expanded very slowly (25ccs weekly) and eventually exchanged with no problems. If you remove your TE you might want to discuss fat grafting prior to attempting another TE to help with vascularity and thickening of the skin. This is now being done more often on radiated skin and seems to be helping a lot of ladies with thin skin issues, but the same principle can apply to those of us with healing or infection issues and thin skin.
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Special K
My expander is out and I'm completely flat on the right side. How did you care for your skin on that side?
Thank you so much for helping. You ladies are the best.
Hugs
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SA8PG - I didn't really do anything specific for the skin - mainly because I had multiple healing incision lines from the skin repairs. I just had fat grafting to that side in November, but my PS does like patients to massage to prevent scar tissue build-up. I would use coconut oil, vitamin E oil. or cocoa butter.
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SA8PG: I had nipple/skin sparing BMX done on 9/12/14. About 5 weeks later I developed an infection and seroma on the cancer side. On 10/27 both TEs were replaced and a couple weeks later I started fills. Then on December 19th I developed a terrible infection, spending several days in the hospital on IV antibiotics before having surgery to remove the TE on the cancer side. The skin was very thin and starting to split at the incision line. My PS told me I need to wait 4-5 months to let everything on that side settle down before attempting to do any further work on that said. Where the thin skin is I can feel my ribs and muscles, like they're under tissue paper.
Right now the plan is that at the end of April, or sometime in May, I will have some grafting done and attempt to replace the TE. We will go VERY slow with fills, adding only 25 cc every two weeks. It is going to take me a long time to be done with this process! I really don't want to do a LAT flap. I'm not a candidate for a TRAM or DIEP flap because I had a tummy tuck 5 years ago. Because of the wound healing problems I've had I do not want to attempt the lat flap. I think if the the TE doesn't work out this time I will just go flat on both sides.
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I am new to this thread as I just had my tissue expanders inserted on January 21, 2015. I had gone flat for a couple of years, partly because I couldn't stand to have anything placed against my skin - even a camisole. I separated from my husband a year ago (in part our relationship deteriorated because he did not take care of me during my illness and surgeries). I am amazed at how happy the small little mounds under my chest made me, I had not expected that! I hadn't realized how much the missing breasts affected my body image.
I had complications during the prophylactic mastectomy on the right side with a blocked drain, hematoma, and seroma. The incision had been reopened twice to drain the chest, so now I have a lot of scar tissue on that side. This resulted in having a lot of drainage on the right side when the tissue expanders were placed in January. I continue to have pain in my right shoulder, inner side of my right arm and fingers. I can't hold a pen to write by late afternoon or evening. Did anyone have this problem? and did it go away? I am worried it will get worse with each fill.
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Finallyme: So sorry you are experiencing this pain and congratulations for deciding to reconstruct. It can be a difficult decision after being flat for awhile. After asking many times, my PS gave me a referral to physical/massage therapy. I have been 4 times in the last 2 weeks as I was very tight in the chest and hoping to get more fills, which I did last week. It is the best thing that I've done for myself in the last year! Mostly what I'm getting is massage of the pecs, TE area, shoulder area and back before the fill and the day after the fill. I feel like a new person. And it's covered by my insurance. I am at a place that specializes in oncology therapy and massage of the breast.
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Thank you howdidigethere! I have seen massage therapists for many years for a back injury. I am hoping that my PS will give me permission to have massage in the areas you mentioned. He put an initial fill of 150cc in when he inserted the TEs. I am going on the 23rd for my first fill! I am very excited, but I am worried that it may cause the pain to get worse, or that the use of my hand will be more affected. I will let you know how it goes. The left side is absolutely fine. The right side still quite tight, probably due to the scar tissue, but I have noticed that there is some movement in the skin now, which is encouraging.
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I am amazed by the number of surgeries that some of you had! It is very scary, and in some ways I am glad I didn't know before I had the TEs put in. Yikes! It is great that there is a place to find support.
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Finally, I'm sorry you are having trouble. But your fill might actually help you. It has happened that a fill moves the TE away from a nerve so they don't hurt as much. And don't look at my sx list it will scare anybody! LOL. Sometimes things just happens! LOL
But I know after my BMX, I was relieved to see what someone on the boards called twofriedeggs! Cause they really do look just like that. LOL but even the bumps make me feel like I was on my way to getting back to normal. I ad what I call "Scenic Detours" on my way but most people are on the express track. Which I hope is your path.
Much love
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Not sure anyone can answer this, I had mastectomy on left side in October. Had tissue expander placed at that time. Just recently and seems like after the fill I had two weeks ago, I have been experiencing some pain/achiness/soreness in my shoulder blade/back and neck. Was wondering if having the tissue expander almost filled can be causing this? I recently returned to work so I have been sitting at a computer for a long amount of time during the day and then when I get home, so not sure if that has anything to do with it. Also had my last chemo 2 weeks ago and maybe could be from chemo?? Thanks for any info that would help!!!
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Thinking, I had a lot of pain in between my shoulder blades. It got worse as I got my fills. I tried to keep my shoudlers back, but it still ached. PS thought it was due to shoulder blades muscles compensating for other muscles cut during surgeries. A massage therapist gave me pregancy massages as I couldn't lay on my stomache. I went to one PT session too where they gave me some exercises. After my implants, it pretty much went away, but every once in a while, I will notice tightness.
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thinking - same here, I had pain right between my shoulder blades - dissipated after exchange surgery. Keep in mind that the TE are pulling on the pectoral in an unnatural way with very little give - the implants are softer and while still displacing the muscle it is more forgiving.
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Finally: I had to ask repeatedly and insisted on the referral for PT/Massage therapy but finally got it and I'm going to a place that specializes in TE and implant massage. Provides so much relief for me.
Thinking, Special & Fluff: I too have had the back pain and use a heating pad on low for 10 minutes at a time and that seems to help tremendously. Along with 1/2 valium when it's really bad. But no heat on the front!
I had what I hoped to be my last fill ever on 2/19, posted pictures on the picture forum under 'What's Next: 3 PS, 320cc' and it caused the worst side effects ever. I call it the mother of all fills. I was in a lot of pain that day and sick and slept the whole next day even running a 100.2 fever and a little pink/red. Talked to PS office. No fever now but continue to be a little pink/red. Feeling a bit better today finally. Will call in again tomorrow.
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It doesn't seem to go away and is aggrevated when I sit at the computer. Since this just really started a few weeks ago, is there a need to be concerned that it could be anything else??
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Yes!! All of the above. You may be experiencing pain from one or any combination of the things you mentioned. You are also returning to work fairly quickly. You will find that your body needs time to heal and refuses to go by the schedules we set for it. Although I am on my second tissue expander (long story), I still feel pain. Although I will say that my body did get used to the expander but it took at least 8 months to even be able to sleep on my side. A body pillow is very helpful. As for sitting at your desk for long periods, there is something called a dog bone pillow, that goes between your lumbar spine and the chair. Most people with low back pain use them, but I found one extremely helpful for my shoulder and expander tenderness. I think because it improves your posture and supports other structures that may be related to pain in other areas. Anyway, good luck, hang in there, it does get better, god bless.0
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One of the issues with expanders is the metal that is used to locate the insertion point. They use a magnet to do this. However MRI s are out of the question while the expander is in place. What schedule are you on for follow up testing with your onc? Many other type of tests can be done to see if anything else is going on. I would highly recommend keeping an open line of communication with your onc. Concern about ongoing pain in that area certainly falls into that category. After all that is the same area where your cancer was. Call your doctor, don't feel like you are being a bother or silly. They do not know unless you report a problem and can't help unless they know. Good luck and god bless.0
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I loved your post, especially the part where you said how happy those little mounds made you feel! I too ended up with alot of scar tissue (after a failed tram flap left me with a large open wound.) I recently had a dermatologist ask me about past sureries. When i mentioned my reconstruction surgeries, she said "oh well those are elective surgeries" yes a doctor said that! No one should ever have to apologize for wanting to put their body back together after being ravaged by this horrible disease, we certainly have the right to embrace and feel joy over regaining what we have lost. For many of us it is an important part of the healing process for our physical, mental, and spiritual well being. Good luck and god bless.0
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I have had no testing done with the exception of the original MRI that found the additional lesions. When I asked about scans MO told me that they don't do them as nothing would be picked up since its too early.. I go back to the MO on Thursday for blood work and to get prescription for hormonal drug. It will be three weeks since my last chemo. Still going back and forth about radiation...I have a tough time making decisions. Since I can hardly take the TE now, the last fill is this tuesday which I assume is going to be hell.. I don't know how I could do radiation and keep TE in for an additional 6-8 months after with no guarantee of success. RO said that she was not recommending that I needed to have it.. but I see so many that have had it that I wonder if I am making right decision.
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Thanks to all of you for posting both trials & triumphs. I had bilateral mx on Jan 9 with immediate lat dorsi flap and te placement. I have been so very happy to have started with my little "tree stumps" as I thought of them at the time. It saved me from depression that I would have surely have suffered without them. That said...my te's are 14 cm diameter, which feels awfully wide for my chest & is very uncomfortable. PS wanted to add to te but I wasn't ready. I go back tomorrow for possible fill & hope to ask about the width issue. I didn't even know there were choices until finding this forum. I saw a site relating to chest circumference measuring, but can't seem to find it again. If someone could point me in the right direction it would be helpful.
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k sorry I can't link but try implants 101 with WhippetMom.
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