TEs. A Beginner's Primer
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I am intimidated by the thought of the LD flap/TE surgery, and yet I can see myself ending up in the same frame of mind as you were, Kathy. I am ok right now flat, but I am feeling a little sad about not having breasts. I'm not sure if it's that I actually need them attached to me, or if the shape is what I miss, but my mastectomy bras should be here in a few days so I will hopefully have a little better idea about that. The idea of the surgery, or more accurately the recovery, is daunting; I have a high pain threshold and did great following the BMX, but the flap surgery sounds miserable (though maybe I am just working myself up over it).
I am also a larger person, and am having trouble finding pictures of what to expect in terms of results. I finally found two last night, but I haven't looked here yet--I don't think I have enough posts yet to join the photo section.
Thanks so much to all of you for sharing what this has been like for you. It is such a help!
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I'll add my limited experience with TE's to this thread. I've had them in for about 6 months. My biggest tip is patience
I dealt with alot of pain from the TEs post BMX and still was having quite a bit of pain from them 6 weeks out. I'd been sleeping in a recliner those 6 weeks. Then I found out I would need chemo after all and pretty much fell flipped out because I was scared of spending months and months with the TEs in, plus having chemo and trying to sleep at night in bed with the darn things. BUT, pretty much I woke up one morning (about 6.5 weeks) and all the sudden the TEs weren't painful anymore, uncomfortable yes, but I could sleep without pain! Also, random tidbit of info in case it's useful to someone, I came home from surgery with just small gauze pads covering the incisions only, and a clear plastic film covering my whole chest. No bandages,wraps or surgical bra. I mention this only because I was surprised at that and it doesn't seem too common.
I still have the TEs since I just finished up chemo, but they aren't horrible--just uncomfortable and I do have to roll over quite a bit at night because of soreness.
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I've been trying to think of an analogy regarding what TEs/ implants feel like for those contemplating going this route. I am at a loss. I thought about what it feels like if you have an arch support in your shoe. You can feel it if you think about it but otherwise you don't notice. Anyone have any better descriptions?
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farmerlucy - I think that's a pretty accurate description of how TEs feel most of the time. I feel that way about my implants as well. They still feel a little bit foreign.
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I just had my exchange surgery. I had a bilateral mastectomy in October with tissue expanders inserted. When I woke up in recovery, I had 100cc in each expander to start a chest mound. I was worried with the first fill. That took place 4 weeks after my surgery. I took 500 mg acetaminophen and 400 mg of ibuprofen at the same time about 40 minutes before my fill. The needle was a bit daunting even though I read to expect this. It's weird. You feel your chest muscle get tight and then it's over. My fills were 100cc each side. When I would drive back to work, my arms would hurt. The chest muscle felt like I had done 1000 push-ups and the pressure from the muscle was squeezing the nerves in my arms. About 24 hours later, the soreness was gone. I got fill ups every 2 weeks and although the expanders were hard, I didn't find the expanders as uncomfortable as some have mentioned. I will say that I practice meditation and this helped with the fill ups and the patience until the exchange surgery which was a 5 1/2 month time span. I did journal throughout the process and I slept on my back elevated during the whole process. I'm a back sleeper so that was helpful but did miss turning on my side. I used pillows under my side to do a lilies side turn/twist to sleep. I realize I'm lucky not to have disliked the expander stage as much as some. I am glad to have moved to the softer side this week.
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Hello.
I had my bilateral skin sparing mastectomy on 2/27 and just had my first fill today. I talked a lot with my PS (a highly recommended one who specializes in reconstruction) about his philosophy on the reconstruction process. He said it should cause as little discomfort as possible. He fills between 25cc and 60cc each fill, depending on the patient. As he noted for me, we're in no rush, so why try to fill quickly? I am approximately 5'1", 111lb, have a 30.5" rib cage and am fairly lean. He filled 80cc during surgery and 40cc today. It felt weird, but not painful, and I don't feel much tightness either. The TE is bothering me near the top on the outside area of one breast, but not too much elsewhere. I think of this process almost like getting braces tightened.
Ultimately, I want to get back to my C cup, but without all of the droop that resulted from nursing four kids (including a set of twins). He thinks another one or two fills (so, to about 180-200cc) will get me there, given my petite frame.
As far as choosing the final implants, I was really surprised, and encouraged, by his method. We have talked about my desired post-reconstruction look. (No ball-type boobs, not too far apart as my natural ones were not very separated, C cup, etc.) To get that look, he brings a number of sample silicone forms into the OR. While I'm under, and presumably after they remove the TEs, they sit me up and try them on me to see what looks most natural and appears to sit well on my rib cage. Very cool!
At the time of the exchange surgery, I am also going to have him put back together my abdominal muscles (separated when I carried my twins, each 6.5 lbs, to 40 weeks) and remove the extra twin tummy skin. He will also try to get some stomach fat at that time (or maybe some from elsewhere, but I didn't ask about that) to put around the edges to make the transition between implant smoother and fill in any divots that he sees at that time.
I've concluded that the reconstruction process is definitely as much art as it is science!
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I would suggest that you take pics of yourself as you go thru this process. I'm really glad I did, I can go back and see how bad they really looked before the TEs were placed. I realized how much has changed from being flat for 5 months to now with the implants in. When I think about what they look like now, it's so much better than what they were. I still have the little mudflaps but they were very big before and double! Now only I know they're there, in clothes no one else can tell. I'm 6 weeks out and they are getting more comfortable each week. A few times I haven't even notice them.
Paula, I'm large, 200#, 38 ribcage. I can pm you a couple pics if you want. I didn't have the flaps but I had a breast lift years ago which affected the look now.
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Thank you so much--that would help!
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Paula, sent PM.
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Thank you! I see that I have it, and will check it as soon as I get home from work. (I don't want OIT to wonder what I'm looking at at work! LOL)
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I had my bilateral mastectomy with reconstruction on Feb 5 2014 and was filled to 500cc at that time. I have had weekly fills of 60cc andI cannot tell you how miserably paitnful its been. A few f you know me from other topics related to TE. I am still in soooo much pain. Next Wed will be 6 weeks since surgery. I cant believe how bad I still hurt. My PS took me off of pain meds. I still take muscle relaxers ...Robaxin and flexerall but it doesnt help with the pain. I just cry myself to sleep at night and some throughout the day. I have told PS how bad I hurt and they keep saying.."oh its normal to feel tight in your chest" Ugh! Its not just tightness...its real pain. I am growing to annoyed. I am happy to say that my last fill is next Thursday and I will be 760cc. I am 680cc now.
I hope everyone is getting better!! Good luck to all!
Mindy
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Oh Mindy - 500 at mx really!!!!!! No wonder you're in agony. I only had one fill of 150 and I was in pain for weeks. By chance were your pecs pretty strong to start with?? I know this is miserable. I would put Bengay on my boobs to help with the muscle pain (not on the incision) also I put those self heating sticky charcoal pain patches on them also. I really feel for you!
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Mindy - does your pain subside between fills? I know you are anxious to be done, but maybe spacing them out more will give your muscles and tissue a chance to stretch more gradually and be less painful. I only had 100 cc at surgery. I really can't even imagine being filled to 500 right away and then pumping 60 more in each week. Ouch!!
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This afternoon I went to a PT session. (My first fill was this morning.) I wanted to make sure that I had an evaluation from a professional and then good advice on range of motion exercises, which my PS said I could begin today. This PT specializes in breast cancer patients, and she was awesome. I did have some weird, periodic shooting pains after the fill, as well as tightness. The exercises we did together this afternoon, and then which I repeated this evening, do seem to have helped.
I read several posts from women who suggested exercise/stretching to help with the soreness and tightness. So far, I can attest that it has helped.
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Mindy. You can put off your fill for a week and see if you feel better. You are in charge of your fills. Just cancel snd wait an extra werk. If it helps just fill every 2 weeks. Hugs
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be vocal about your fill sizes. don't let doc push you into larger or more frequent fills than you are comfortable with. And find out before surgery how much he plans to put in then... Be sure it's small ish so you don't have super pain from to much to start.
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Mindy
When I was getting fills I spaced them out every 3-4 weeks and only had 50 cc each time. I felt that my radiated skin needed to be dealt with slow and low. I never had any pain, just tightness so slow your Dr down!
Babs
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farmerluicy...Yes!....and yes I had pretty strong pecs but omg I cant get this pain right. At times I am great if I am completely still but on second later all hell breaks loose. I also have a constant soreness and pressure which I can deal with but The pain that is excruciating feels like ripping and pulling, at alloderm sights and some sharp shooting nerve pain. I still need the pain medicine but they wont give me anymore.
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Sarahjane....Yeah its been tough! I have asked to space my fills out but the dr insists that its the best route for me. Also she is pregnant and about to have her baby any day now...prolly has already...and I feel it had something to do with it. And honestly the pain doesn't even have a chance to subside...I have been in pain since the date of my surgery on Feb 5th. I mean Ihad a coule days where I thought it was getting better but then it was back to full blown pain.
Moonflwr...Last week I was filled on Thursday and then my Ps wanted to see me on Monday of this week before she had her baby and they filled me then I didn't even have a chance to recover from the previous fill. I sometimes feel pressured and feel like a big wuss because I hear of so many woman not having this much pain...but then again I haven't ever heard of being filled to 500cc at surgery either! I thought I was even going to be filled to 150cc. I was thinking about doing what you said if next Thursday comes and I am still in pain! I cant wait till after the the last fill...Ill be left alone for 6-7 weeks! (ps is on maternity leave!)
Aviva...my PS office wanted to do 100cc fills per week and I just said heck no...60 was bad enough for me! Oh my I don't know what I would have done with that much! I just cant wait till this is over...I have a feeling its going to be a longer journey than I have anticipated!
babs....I wish I had went ovr this more thoroughly in the beginning. I usually never have a problem with pain...I have always been such a great pain tolerate kind of person. I only took pain meds for a week after my 2 left knee reconstructions and c sections. I NEVER EVER expected to end up in this much pain. I honestly thought it would be similar to all the other surgeries pain wise. Damn I was so wrong! If I had to do this again I probably would, but I would tell my ps that I want to take things much much slower.
I hope if anyone is reading this that has to get TE with fills weekly/biweekly or what have you...take the advice from these women and go low and slow. I have been in some God awful pain and been refused pain meds and only given muscle relaxers due to addiction fears from my ps ( I can assure I am not addicted) and it has been sooo horrible!
Ladies..thank you for your advice andstories
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Mindy, you have to tell them stop. Til you get a handle on it. I had another friend who was in pain for a couple months. She HAD Direct To Implant NO TEs. She was filled at bmx. It takes a while. I'm sure it will be better but you have to take it one day or hour or min at a time. Try hot or cold packs just to get you through. Try not to do too much. Hugs.
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Mindy, I agree with moonflower and everyone else-- stop or slow down the fills. If you can't face your ps then cancel and reschedule for a few weeks out. Who cares if it is 6 weeks. You already have had more than most of us! Take care!
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I will. I don't think I will go this coming Thursday. I wonder why she is so quick to get it done? Today I noticed that my left TE looks like its sliding a little more to the middle of my chest. I have noticed this after surgery but thought it was mostly swelling. but as the swelling is going down...I suspect there may be a problem. My right one doesn't move at all. I feel that my alloderm on the left side may be failing.....I really don't notice a crease down the middle much anymore...when I lay on my right side I can feel and see it slide to the middle. Looks like I have a uniboob...I hope and pray its not symmastia. Has anyone ever had this happen with one tissue expander?
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Mindy don't go grabbing trouble. TEs can move a bit. They can fix it at the exchange. Sideways. Up or down a bit. If it drops to your waist THEN I'd worry! LOL.
Much love.
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Mindy, I feel for you. I had my bilateral mastectomy and TE insertion on 6th Feb (day after you!) and only had 150ml at surgery. And felt sorry for myself and sore with that!!! I have one sitting higher than the other and the surgeon said that was the whole point of a 2 stage surgery, so they can try to get it symmetrical at the second (exchange) surgery.
I haven't been able to lie on my side (still do 3 pillows flat on back sleeping which is tough) but they can move a bit. Agree with Moonflwr, try not to fret too much at this stage.
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Mindy - give your upper half a chance to normalize a bit and then see how the TE looks. Mine felt cemented in and didn't move at all, but they definitely looked different at different times during the process. Swelling and healing can affect the appearance. Hopefully you get a little relief by delaying your next fill. Tightness and short term discomfort are normal. Excruciating, non-abating pain is not.
After my BMX, I felt like I had barbed wire wrapped around my chest, pulled tight. That was the pain that lasted the longest for me - besides the tightness and soreness from the fills. But the pain went away between each fill. It was comparable to getting braces tightened - if you've ever experienced that. I had sharp shooting nerve pains when I had my lumpectomy, so far not yet with this surgery. But I still have numbness, and I think the nerve pain is feeling returning to the area. My PS told me that the best thing I could do was to stretch. I had one area - an internal stitch - that hurt really bad at times. I have a pretty high pain threshold, but this would stop me in my tracks and take my breath away. He said to stretch it and he was absolutely right. Once I stopped "protecting" it and started stretching it out, the pain stopped.
So hopefully taking a little hiatus from your fills will give your body a chance to adjust. It's a marathon, not a sprint.
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Hello all,
I am having TE surgery on April first, and I have to admit I am actually more apprehensive about this then I was for my BMX.
I have heard so many scary stories, and only a few good ones. Reading some of your post is helping a lot. I'm not a wimp but.....
the whole constant pain thing is not for me. Any suggestions for keeping my sanity for the next 14 days.
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hi mommychef, does that mean you like to cook? Cook up a storm (besides that helps for after you won't /don't want to cook.) what else do you like to do? Sew, read? Do lots of that if you can. Got anywhere you want to go visit? Somewhere where there's no snow?!
My exchange was moved up 3 weeks because he had a cancellation, so I didn't have to clean house like I was planning! I was heading to a sewing retreat that ended on Sunday afternoon and I went in on Monday morning.
My pain wasn't bad and I used the pain meds as needed. Mostly I would cut them in half and take it at night. I haven't had any issues, still a little itchy at times but otherwise it's doing good.
I hope your recovery goes smoothly.
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My exchange was my easiest surgery. And after quite a few it was a great feeling. It does happen. Much love
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I agree with Moon 100% - my exchange surgery was a breeze! It is such a relief to get rid of those hard old TEs and move on to the squishy side. The most trouble I had after exchange was trying not to overdo because I felt so good! I think I took the pain meds twice and then slept through two cycles of them, so I just quit. The TE phase was definitely my least favorite phase so far, but it's a means to an end and doable as long as - and it's been said many times - you take it slow. Remember - that PS works for you!
BTW - Nice job on the thread, Moon!
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Mommychef, that is great that you are close. Keep positive and plan lots of rest,,,
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