TEs. A Beginner's Primer
Comments
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nancybell yes they do suck. That's what they are supposed to do..... LOL. Sorry couldn't resist. LOL just remember not to rush things.
I never got constipation from the pain meds. I was too busy dealing with the diarrhea from the antibiotics! LOL. Dang if we aren't all different after all. Just goes to show! LOL
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sunflowercat: Thanks for the added info, and sorry to hear that you may have an extended TE period. On the plus side, it sounds as though your PS is exercising good judgement if your tissues need time to gain strength. I have only had 2 fills: the first was awful and I was really painful for a week, but the second one was much better (really only significantly painful/uncomfortable for 24 hours). I have another fill this Thursday, so am crossing my fingers that this trend will continue. I think a lot of the original surgical trauma and pain, as well as nerve pain, played a role in that first hard fill (which was 250cc). With luck you, also, will find the process easier over time! My clothes fit really well now, but this will get trickier if they are planning to fill me much farther.
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What is the average length of time women have their TE's in place? Originally my PS told me it would take about 2 months to do the fills, then let them 'rest' for two months (?) before exchange surgery. That would put my exchange surgery around the beginning of February assuming I don't have any problems between now and then.
I have come to the realization I have the most difficulty with the TE's - both emotionally and physically - at night. I know most of you have trouble sleeping with them, pain and/or stiffness when you wake up, etc. For some reason I CANNOT sleep in our bed but I can sleep in the exact same position on the couch. WTH? I usually move around a lot at night, trying different place. First the bed, maybe lasting an hour there. Then I move to the recliner or the couch. I can sleep better in either of those, often for two hours at a time. Every day brings a new pain, another "should I worry about this or not?"
But its the emotional part that gets me at night. In the dark of night my mind plays all kinds of games with me. When I wake up in pain, sometimes claustrophobic and feeling really close to a panic attack, I am ready to throw in the towel right then. Just take the damn things out and put in whatever implant will fit. But in the morning, once I've moved around for 1/2 hr or so, I'm feeling better about things. I remind myself that I have made it 6 weeks with these evil things, I can make the 8 or so weeks left of fills, I can wait for the exchange surgery. Never in my life have I truly had to live "one day at a time" like I do now.
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250 cc for a fill is huge, huge huge. If you are having discomfort you should insist on much smaller fills. Low and slow is the way to go. I got 100 at surgery, started 3 weeks later with 50 and then did 50 every 2 weeks til done. Then 6 weeks til exchange. I am small so it didnt take long. But I had virtually no discomfort during the fills. And if one seems too big they can take some out, same way it went in!
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Hi Aviva,
Yes, I know that is a bit unusual. My case is a bit different because my TE is on top of the muscle rather than beneath it - so none of the usual pectoral stretch and spasm was expected. I had around 300cc of air put in the TE at surgery (my breast looked close to normal after surgery), then at around 3 weeks 250cc air were pulled out and 250cc saline put in. Because of the TE placement and my general imperviousness to soft tissue pain, and since I was already inflated to that volume, I thought the process would be a breeze and did not premedicate. Wrong! I was absolutely miserable for a full 4 days, after which it gradually cooled off. Even though the TE is above the muscle, I think it stirred up inflammation within the pocket, and the added weight of the saline put more stress on the TE anchor points and everything else. Next fill was only 40cc - I was painful for 24hrs, but pretty much back to baseline after that, thank goodness. I have another fill this Thursday - not sure how much but as my UMX breast is now a bit larger than my natural breast I can't imagine I will get a large volume.
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Flannery, I hadn't heard of air Fills ever. So that's an interesting plan your PS uses. Im curious to know how the implant is held up with the saline in. I'll have to Google it!
Noon, you'll get through this. Just low and slow. I'd really doesn't matter how long it takes. Most women have the least discomfort with fills of 50. Some as low as 25. My fills were at 100. Working for a total of 850. I had very little pain until my last 2 fills. Then ouch! My last fill was only 50 and still hurt. At that point I was actually walking into doorframes. I am happy with them now though.
From first fill in the hospital of 250, to my exchange, took me 2 years because of infections and replacement sx. But my last TE placement sx was in September, and my exchange was in December, so 3 months for fill and rest!
Much love.
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noonrider- sorry you are having so much trouble with the darn TE's. Two months is a average amount of time to have them. With that being said, all PS's are different and I've read on this thread and others that some have them in longer and some will do the exchange sooner. I got mine placed 6/26 and started with fills two weeks after BMX. I had a fill every week for six weeks. My PS has his patients wait an additional two months for the pocket to heal before he does the exchange. For the first 6-7 weeks I was very uncomfortable and often did what you are doing to try and sleep. I found that having a lot of pillows to prop me up and to have at my sides helped. What helped the most is to take a Valium to help relax the pec mucle and it really helped with keeping me asleep once I finally nodded off. If you don't have any Valuim ask your PS for some. It helps after fills as well. My stomach was so upset from all the pain meds after surgery that I stopped all pain meds 12 days post op and took advil for discomfort but what helps me the most with the TE pain/discomfort is the Valium. Once I finished with the fills, it did get easier for me. They are still uncomfortable at times and I still have to sleep in a pillow nest mostly on my back or if I hug a pillow I can be half on my side but it is not as bad as those first couple of months. I still have to take a Valium a couple of times a week so I can get better sleep. I'm do for my exchange in November but had to push it out to mid December because of work. Lucky me.....I get another month with these coconuts. Hang in there, it will get easier.....you can do this!
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I just got home from the PS. I had a small fill today, only 40ccs, because of my port surgery tomorrow. PS confirmed that they plan to fill me to approx 800 then before I start radiation in April, deflate to 250 on my left side only. After radiation I will have large fills once a week. I will have to wait another 3 months once all is done for the exchange. So, I will have these blasted things right at a year. Seems like forever.
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Moonflwr912:
Yeah, my path seems to be rather unusual! Everything has gone well so far, however. My surgery team uses air to begin with to give the tissues a chance to heal up a bit from the mastectomy and TE placement before adding the weight of fluid to the equation. I gather it also improves survival of the nipple/areola when nipple-sparing mastectomy is performed (less stress on the surrounding skin that is providing the blood supply to the nipple). I believe my TE is sutured to the chest wall using its 3 suture tabs, and I also have an Alloderm sling to support it from below. I'm not sure you're going to be able to find much using Dr. Google, and I have not been able to find any scientific articles addressing over-the-muscle implant reconstruction. The only private commercial PS practice I am aware of that advocates the over-the-muscle reconstruction, especially for active athletic women, is Dr. Karen Horton's San Francisco practice. Her website doesn't provide a lot of surgical detail, however, and I think she mostly does direct-to-implant reconstruction rather than two-stage/TE reconstruction. My PS team has assured me they've been doing a lot of this recently with good cosmetic and functional outcomes. This probably means that I am part of the initial case series that will eventually get written up in the scientific literature, however, so wish me luck! My interest in this approach was to avoid long-term pectoral muscle, implant, or shoulder problems related to my active lifestyle and upper body activities/exercise. Supposedly there is also a lower rate of capsular contracture, but as so few of these reconstructions have been performed I will reserve judgement on that one until a lot more data is available. Since this is an unusual approach to reconstruction, I have a thread on the photo forum for women that may be interested in this approach in future. Right now (5 weeks post-mastectomy) my UMX breast is virtually indistinguishable from my natural breast. But quite a bit sloshier as my TE currently contains only half of its 650cc fill capacity! :~)
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Flannery - thanks for all the detail on your recon. It sounds very interesting. I'm going to look you up on the picture forum. I really hope it works well for you. That makes sense about capsular contraction, which is one thing my PS is very worried about. Does being more active increase your risk of capsular contraction? (Gotta love the sloshy TEs!)
Noonrider - I'm so sorry you're not feeling good. I have been there - frustrated and thinking there's no way I can do this for a year. Hopefully you should be turning a corner here very soon pain wise. Definitely don't hesitate to take something to help you sleep/relax your muscles if you're uncomfortable or in pain. If you don't sleep, you don't heal and your mind can go to some really dark places when you are sleep deprived. Maybe a massage and some long relaxing stretching might help. I seem to recall that you're pretty active too, so a word of advice: slow and low. After my first 60cc fill I actually felt better, like the TEs shifted off a nerve or something. This 110cc fill has been more painful with discomfort constantly over the past 5 days. I won't be making that mistake again. I'm also going to back off the exercise and focus on more gentle upper body stretches. My PS told me to do whatever I want as long as it doesn't hurt...well he should have said "as long as it's not uncomfortable". I've now learned slightly uncomfortable movements/exercises will be super painful later. Not that awesome sore muscle feeling. Even stuff like picking up my youngest kiddo (who is a beast!) and putting her in the car seat can be enough to keep me up later. As for sleeping, the chair/sofa might be more comfortable because you don't have as much room to move around. In my bed I roll over onto my belly several times per night. It's very annoying/painful. I don't have that problem in my recliner.
Ilovecoasters - that is a long time, but it sounds like you'll probably have an easier time with recon after radiation this way.
Keep your eyes on the prize ladies! (It's what I keep telling myself!!)
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Sunflowercat: If by "active" you mean working out or exercise…umm…no.I used to be. Haven't been for about 3 years. I spend my days chasing after 5 kids, going to at least one of their schools every day, and just generally trying to keep the house floating during this crazy time. I'm thinking about rejoining the local Y, just not sure when exactly I can access it. I do have PX 90 here. The last time I had it out I couldn't make it three minutes into the warm up. ROFL
I'm not sure how much saline was placed at the time of surgery. I've had two fills on my left side, both 50cc. My right side I've had one 50cc fill. I had very little discomfort from either fill. I'm thinking of asking for 75cc this week and seeing how that goes.
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Sunflowercat:
I'm not sure of the answer to your question about exercise increasing the likelihood of capsular contraction. I don't think I recall seeing any scientific or anecdotal evidence to that effect, or I'm sure I would have begun to obsess about it immediately! I was not told anything like that by my PS, though he did suggest that an implant placed over the muscle may be more durable/long-lasting than one subjected to pec-induced distortion over time. Sounds intuitive, but I don't think such claims should be made until a lot more of these surgeries have been done over time.
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flannery, thanks for the info ! It is really something new so I am very interested. The aur first and over per installation would have some benefit to someone who is athletic. There have been active climbers sho had to remove the implants because the pecs couldn't handle the implant. So it's good to hear other choiced. I'm sure your PS had good reason to use this on you.
Ilovecoasters, that sounds like a good plan for you too! You might ask your PS about fat grafting after Rads before re inflation. I hear the outcome is better.
Much love to all.
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ilovecoasters:
One of the things I heard about from other BC/recon women at my clinic is hyperbaric oxygen therapy after radiation to improve skin healing and reduce the chances of problems with implant reconstruction on the rads side. I don't know anything about this personally, but it might be something to ask your PS about down the line!
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Thanks Flannery. It all seems so far away. I'm also upset knowing I will go into a third year for insurance purposes.
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ilovecoasters:
Your situation totally sucks - no two ways about it. One of the most frustrating things about this breast cancer stuff is that you make all these major decisions before you even know your final diagnosis. Then, as if a mastectomy was not traumatic enough, you get to receive a whole new set of bad news about pathology, treatments, prognosis, etc. My situation turned out to be very lucky with no need for chemo/rads, but I could have just as easily had your diagnosis or worse. There was a story on another thread about a healthy woman who went to see her doctor about a rash on her breast, and after diagnostics it turned out that she had invasive cancer that had already metastasized to her liver and spine despite a regular history of annual mammograms/exams. Your situation breaks my heart, and that woman's situation just crushes me. This disease has no mercy, and it is a total crap-shoot who ends up with a favorable outcome and who ends up with the shit end of the stick. I am continuously amazed by the Stage 4 ladies who don't seem bitter about women like me with a better diagnosis/prognosis and continue to offer nothing but support and kindness - their generosity of spirit just makes me weep. I am sorry for everything you will have to go through, yet at the same time I know you will find the strength to do it because that's what women do. But I wish there was something more concrete I could do to help beyond sending positive vibes through the interwebs!
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You are all so amazing that I feel silly complaining about my TEs that are only filled to 200 and 250 (one side less because radiation years ago ruined the skin's flexibility).
I have had these since March 25th, and due for switch Nov 20th, if all goes as planned.
I am so uncomfortable, it's ridiculous. I dont know how you are all managing with jobs, young children at home, etc!
Last night I feel asleep on my side, and I have been paying the price all day.
Had port flushed for first time yesterday. That's sore, too, now. Flu shot , too.
ugh I feel like such a complainer. My family figures chemo ended Sept 22, and I should be myself by now.
THANK YOU for listening. I know you understand better than anyone!
BE WELL WISHES and HUGS to all!
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OMG port flush! I completly forgot to have my port flushed. It hasn't been accessed since Sept 12. I forget how often it needs to be done. Is it like 6-8 weeks? I'll have to call tomorrow. ….sigh…one more thing.
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noonrider - port flushes usually every 6-8 weeks, so you should be ok. My port was originally placed at the time of BMX - my surgeon puts them in after the removal of tissue and avoids the external incision to place it. I ended up having four additional unanticipated surgeries before chemo and they forgot about my port, so I had 14 weeks between BMX and first chemo without the port being flushed - it worked perfectly.
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noonrider I've had mine in for almost 3 years.usually I go in e erg month but 6 weeks is the normal. If it should stick the put in a clot busting type of med to open it up again. I go tomorrow for my magnesium test. I get that monthly so they flush it with that. I'm taking bets. Will I need an infusion or not. Hmmmm. Stay tuned.
Much love to all.
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so new dumb question time...lol...i just had my 2nd fill done today...which actually went off without any pain (we'll see if I still feel that way in the morning)...PS said we're at 300+ now..(sorry can't remember exact number...it's been a long day) but he said one more fill and then we will add a little more and we should be where we need to be...I want to go larger than original size (i also only had 1 TE placed because I only lost the one breast)...my TE will be expanded to the original size of my remaining breast...is this normal to still be able to go larger? I did not have radiation so is it possible that my skin is flexible enough to add larger implants on that size for the remaining amount I would like to be? when I questioned him about going larger he said that we will be fine to do that...My PS is a man of very few words (but he's also one of the best in the state) so I tend to just trust him to know what he's doing on this...If this is a good thing maybe I can have my new body shortly after the beginning of the new year (which would be nice)
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camee if your skin and muscle can take it and your PS is on board do what makes you feel good.
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I took out my own right drain last weekend after I accidentally cut the tubing. PS took out the other one on the 21st. Sooo much better.
I think we will begin fills at my next appt. on Nov. 4. She said we will fill weekly. Still hoping to get the exchange before Dec. 31, for $$ and insurance purposes. Won't know how all that will time out until we start filling. We shall see.
I cannot begin to imagine what so many of you are going through with repeated procedures, chemo, rads, extra pain and discomfort. Bless you all.
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TEs and bra question: I came home from the hospital with a sport-type bra with 11 hooks in the front. I wear it nearly all the time - more comfy that way. With fills and gradual enlargement, that bra will no longer fit. What have you folks done? My pre-cancer bras are 38DD, so too big to help support TEs. Will I need to keep buying bras each week? Any recommendations for stretchy, yet supportive bras that will expand with me? I do need help. I have always hated bra shopping. Thanks.
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IntheATL2014, I like Genie bras (because they're stretchy) and Fruit of the Loom sports bras. They can both be bought at Walmart, and they're inexpensive. That can be important when you're in "transition."
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I've been wearing the Walmart sports bras too. They are almost identical to the surgical bra but much more comfortable. They hook up the front and are 2 for $10.97. Can't beat the price.
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I used the Amoena camisole I got from the surgeon all during my reconstruction. It had poly poofs that you adjust the filling up or down as you get filled. When I list one TE, I filled that o e back up. It's comfy and here in WI warm! LOL. Sandra also recommended the genie cami's . They are on sale now but I guess they are about 20 bucks normally. But something adjustable is good til you know your size.
Much love
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Just wanted to update. I was on the verge of a total meltdown for about 3 weeks after my bilateral mastectomy with TEs. I was so afraid of the fills. Well I am now 6 weeks post op. I've had 3 fills so far. The last two I got 120 ccs on each side. No pain whatsoever. They are uncomfortable but at least no pain. Propping pillows and side sleeping is getting harder but so much easier (mentally). And I return to work this coming Monday. Not happy about that, but I have to go back sometime. Just wanted to update for those that need encouragement. : )
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www2b I'm so happy you are healing and feeling better. Glad the fill aren't too bad either. Sorry about the going back to work thing though
Much love to all.
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Genie bras!
I had bought some pre-BC, and they definitely didn't fit my 40DDD+ girls.
After surgery and during fills, I decided to try them again.
Perfect combination of easy to pull on, gentle pressure and support, comfy enough to sleep in, and they grew to accommodate whatever size I was.
I still wear them 2+ years out from Exchange.
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