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TEs. A Beginner's Primer

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Comments

  • horsemom
    horsemom Member Posts: 31

    Erinjmp

    I only took Valium at night during the first two weeks then at night on the day of my fills. I have horses and have started mucking at end of week 6. (Mucking=shoveling their pooh into a bucket). Yowzer. I took smaller scoops. It didn't hurt while I was doing it but my muscles tightened up like iron for a couple of days after.

    However...I still sleep 10-12 hours a day!! I had to quit my naps :( because it was interfering with my night sleep.

    Exercises - they did not give me anything. Just told me to be as normal as possible. My BS got really mad when I asked if I should "T-Rex" the first week. She said to do normal things until it's uncomfortable ... My body would let me know. They said the same about lifting. When I pushed for a weight limit they said 15 pounds after surgery but my body would let me know...no restrictions. Crazy how docs can be so different.

  • sunandsnow
    sunandsnow Member Posts: 17

    horsemom:

    I can't believe you were shoveling two weeks later! You are one tough cookie! I think I was still in bed compaining. LOL!

    I tried just straight ibuprohen but a lot of it (800mg) this morning and no vallum or tramadol and that seemed to be the best so far. Went to two kid basketball games, lunch and now I am headed for a nap. Uncomfortable as expected but not near the tightness I had before.

    Somehow since everyone is on the mend and I think my husbnad now has cabin fever I got roped into going somewhere foo foo for dinner tonight with some other couples.  Not sure I will feel like it but will lay off the meds and use red wine to muscle relax. :) Thanks for your note and enjoy your weekend!

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    erin, you are doing a lot. Remember when you had drains snd they filled fast when you overdid it? Well extra fluid can still happen after they are gone. That's one of the reasons they tell you to take it easy. Also, there is no rush to finish. Take whatever time you need. Getting a fill if you are I'll in any way is never good. I'd wait. Much love

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    horsemom if we would write down every variation of the Dr orders we'd be here a hundred years. LOL

  • melp27
    melp27 Member Posts: 295

    hi all

    just wanted to let you all know ive been reading this thread before and after I got my expander in right side (skin sparing masectomy) as i had dcis in that side and they were able to get it all out during the masectomy. Have had 300ml in at time of operation and my first fill was 40ml of saline. Havent been doing too bad with it all so far just after the fills the tightness was the biggest issue. took panadol for pain for about a day after but thats it.

    Very good information on this thread thanks all!

  • blessings2011
    blessings2011 Member Posts: 1,801

    Yeah, my PS said "no real restrictions" with my TEs in, so one day DH and I took our granddaughters to the playground, and I had DH take a picture of me doing pull-ups on the equipment.

    I had a great grimace on my face, like I was in terrible pain.

    I later showed the picture to the PS and he completely freaked out.

    So I told him "This is what you get when you tell someone 'no real restrictions'.... and by the way, my feet were on the ground the whole time!"

    I think he gave me stinkeye at that point.... Loopy and made sure his future instructions were VERY clear!

  • horsemom
    horsemom Member Posts: 31

    Blessings

    That sounds like something I would do. Too funny. The docs really do have to be more specific.

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    Blessjngs! That's awesome! I wish I'd thought of it. LOL

  • sunandsnow
    sunandsnow Member Posts: 17

    Hi Ladies!
    I saw my PC today and he said its my pecs that are bothering me and are tight and we can wait on a fill. Just him lightly running his hand across the top of them was painful.  I had been training with weights, hard core cross training and yoga the 8 months prior to surgery 5 days a week. I think all that hard work has actually made my pecs harder to work with. Maybe not?  I asked are you sure you just don't want to do 30cc? And he said he didn't want to make me any more uncomfortable. I want to keep this train on the track but I am miserable so I am glad he made me wait.

     He says we are going to try flexerall and he wants me on it around the clock between now and next fill. He will fill me on TH of I feel ok or we can wait until next Monday. I just need to call the nurse and tell her how I am doing. He gave me 10mg pills I took one today and it knocked me on my arse! Fell right to sleep fro two hours this afternoon.  So tomorrow will be a half pill. I think he was trying to be helpful but I wish he would have prescribed me the lesser dose but that's ok I can cut it and take a whole at bedtime on fill days or if it isn't working.

    Really the best thing that works for me to muscle relax is red wine. If it was acceptable I would just have a glass of red wine sitting at my desk at work. Lol!

    Enjoy your evening ladies. Will let you know how it goes.

     

  • noonrider
    noonrider Member Posts: 203

    I had a terrible time with pain after my TE's were placed. Then I ruptured one that moved out of place. I ended up having a lot of scar tissue removed because I was fully encapsulated. Once all the scar tissue was gone I had full range of motion back and no further pain.

  • vfay49
    vfay49 Member Posts: 51

    Moonflwr912, What a nice picture! Congratulations!

  • AZ85048
    AZ85048 Member Posts: 1,467

    Moon - Congratulations! And a rather belated but very Happy Birthday to Felicia Rose!

  • sunflowercat
    sunflowercat Member Posts: 37

    moon - congrats on that beautiful grand baby!

    Erinjmp - you'll be able to do plank/side plank again soon. If you have strong pecs, stretching is key! I started doing private yoga sessions at 4 weeks post BMX to help stretch the pecs. I eased into exercise slowly with gentle yoga, recumbent bike and leg workouts. At 2 months out I was back to mat pilates and able to do plank. By 3 months out I was full force. Hot yoga, pilates, piyo, weights. My dr said I can do anything as long as it doesn't hurt. My only remaining challenge is chaturanga/push ups. I just can't manage them yet, but am hoping in a few weeks I'll have that arm/chest strength built up again.

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    Sorry had to up date my DGD picture! LOL Also want to wish everyone a Merry Christmas or Happy Hanukkah!

    image

  • janett2014
    janett2014 Member Posts: 2,950

    BEAUTIFUL!

  • juliecc
    juliecc Member Posts: 4,360

    So cute, Moonflower SillyHeart

  • anothernycgirl
    anothernycgirl Member Posts: 821

    Moon! What a cutie!! SmileSmile


    Happy Chanukah , Happy Christmas and Merry EVERY day to ALL here!

    with Hugs from NYC Winking

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072

    New to this board. Just had my first fill yesterday, but have very tight pecs. PS warned me that I would have pain, but then I wasn't completely off pain meds from BMx. After about 3 hours fill hurt like the devil. Better today though.

    Asked PS how long I can wait before exchange surgery and she said August was fine. Has anyone waited 8 months for exchange?

    Scottie

  • Scottiemom1... 

    I am on my second fill after my double mastectomy & expanders have been put in... Is anyone else in as much pain as me????? This hurts like the Dickins!!!!! I had my last two drains pulled out last week and they added 60cc to each side.. Went back today, got my stitches taken out and was supposed to get another 60cc put in.. i actually made them stop at 50cc. and I am still very sore. Just wondering if these expenses are going to be like this the whole time, or does the pain and the uncomfortable Ness go away or ease up at all..........

  • blessings2011
    blessings2011 Member Posts: 1,801

    Hi, feelingoverwhelmed - glad you made it over here!

    Oh my gosh - your BMX was RECENT (and on the same day I had mine three years ago). So you started fills early. Sometimes that can be a problem, since there is still so much internal swelling and healing going on just from the mastectomy and recon part of the surgery.

    My PS waits at least a month before starting fills, and I was SO glad he did. My TEs hurt every single day from the minute I woke up in the hospital. Of course, I wasn't using the PCA at my bedside, and didn't take the pain pills after I got home, so I suffered needlessly.

    Once I got the post-surgical pain under control, I was ready to start getting fills.

    One motto we have here is "Low and slow is the way to go." Often, for no reason, the PS wants to do large and frequent fills. Sometimes that's just too much.

    YOU control the amount and the frequency of the fills. Like they told me here on this thread - it's not a race. You probably got SOME saline in the OR - do you know how much? Often, the amount they put in is really not justified.

    Try getting smaller amounts each time, and more spaced apart, like every two weeks instead of every week.

    Many women can have giant fills with no aftereffects at all. Sometimes I was one of those... I had been extremely overweight, I had a lot of loose skin, and my pectoral muscles were very flabby. I got 180ccs in the OR, then around 50ccs every 2 weeks. (The PS had a LOT to work with!)

    In the beginning, lots of us got muscle relaxers and pain meds to get us through the hard times. I got Valium and Norco. Others just took Tylenol.

    There did come a day when after one set of fills, a nervy pain I had been experiencing disappeared altogether. Those TEs are constructed like saline implants, only they have a hard plastic back that can rub on nerves and sutures. Filling them makes them move around in the pocket, and can give you relief.

    One thing that helped me was to take a hot shower at night, letting the water run down my back. (Many of the muscles that are cut and sutured during MX have origination points on the back.) I also got DH to give me a back massage afterwards.

    Just remember - as annoying and unattractive as they are, TEs are just temporary!!!

    If you are having pain, be sure to tell your PS about it.

    Before long, you'll have your permanent squishies!


  • Scottiemom11
    Scottiemom11 Member Posts: 1,072

    Based on what I've read, I may have to back off on the fills. Not sure how much I got in OR, but PS did 60ml on Monday and I go back next Tuesday. I know it's not a rush but wanted to finish before going back to work in 2.5 weeks. That goal is obviously unrealistic.

    Scottie

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    Scottie, yes it is unrealistic if you are having such discomfort. I had fills about 100 each time. No pain just a bit of discomfort that an ibuprofen took care of. Except for the last 2. OUCH. after the first one that hurt, I waited 2 weeks and then the last fill was only 50. yeah ouch again. I was going for 800 ccs. My exchange was 850 Mentor Saline Rounds. I am a big lady and needed big implants. That is about the largest they can put in. I also had alloderm placed at the last TE implant. Recovery from the Exchange wasn't too bad. Please note that I tried the TEs 3 times before I had success. I think I rushed the second time and wasn't strong enough so I had more problems. Save yourself that issue. in all I had my right TE in for 2 years before exchange so dont worry about how long it takes.

    Feeling, what Blessings said! Low and Slow if you are having any issues with pain. The PS may not be happy but you're paying him! (or her). and rushing it is not good. See my story above. LOL

    Merry Christmas. Forget tx as much as possible and enjoy your friends and family.

    Much love

  • noonrider
    noonrider Member Posts: 203

    I got my my first set of TEs on 9/12. I could not handle fills more than 50cc. I was in extreme pain. In fact, I was in pain 27/7. Then at 5 weeks one of the TE's ruptured. on 10/27 When my surgeon replaced it she found I was completely encapsulated with scar tissue. She got that all cleaned up and replaced both expanders. She found a small infection hiding in my right side. After that surgery I felt like a different person. I got full range of motion back and had no pain at all. Fills were a breeze! I did a 50 with no problem, then 75, then 100.

    Then the scar on my right side started to change. On 11/26 my PS did a scar revision in the office, and repeated it again the following week. I needed to sit for a couple of weeks and just let things heal. On 12/17 I went in and it was agreed no fill that day, just let it sit for another two weeks and heal some more.

    On Saturday, 12/20 I spent the day Christmas shopping, and feeling fine. Came home to make dinner for my kids and realized my right pec muscle was really store and stiff. About 1/2 hour later I spiked a 103* fever. I thought I was coming down with the Flu except that I had that over Thanksgiving. I spent the night in agony as I realized my right side was starting to swell. With very little sensation on that side I couldn't feel the swelling until it was around my collar bone and I could feel the mudflap on that side reaching my back. In the morning when I dragged myself out of bed to call the on-call surgeon, I stopped in the bathroom to have a look in the mirror. It was HUGE. It should have been 1/2 the size of my left side, instead it was double the size.

    I ended up in the ER, a couple days of IV antibiotics, needle aspirate of 60+ cc of puss, and on 12/23 I had surgery to remove that expander. I'm now flat on that side. No, let me rephrase that, I have a huge DENT on that side, and a drain of course. But I feel SO much better. I've likely been fighting this infection since my BMX back on 9/12. I had just told my husband last week I was still feeling so depleted, taking long naps every day. I had no idea this infection was brewing and sucking the energy out of me. I'm glad its been dealt with, but I will now have to wait 4-5 months before replacing that TE. I will continue with expansion on my left side but not sure when I'll have exchange done.

    Thankfully I came home on Christmas Eve. I have very little pain and my energy level has been ok considering I just had surgery and am fighting a major infection. I can't wait to get fully recovered from this one!

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    noonrider, I'm so sorry to hear that. I really know how you are feeling. You can see from my signature that I understand!

    Please visit TE Trouble board. There are lots of women who've been through that situation. Although most make it through this process without issues ( what I like to call "Scenic Detours" LOL) there are those of us on a different track.

    I'm here to tell you it can be done even if it takes longer than you want. 2 years after my first try, my 3rd try went on to exchange and it's great. I used the Amoena Camisole with the poofs that you can adjust up or down as needed. I still wear the nude color one as it is a very comfortable undergarment.

    Ps, o was on abx for 6 weeks! IV for 3, oral for 3.

    Hugs and Much love!

  • SummerSun
    SummerSun Member Posts: 47

    Scottie, my TE fills were excruciating for me for the first few times. So much so that I stayed on my pain meds. At about 6 weeks past my surgery, the pain started to subside and has gotten so much better. I have about 400cc's in each with about 250cc's to go. At this point, they feel like softballs, so I am nervous about having the next fill. I too am stretching and exercising. It is funny right after a fill - I keep hitting them for a while until I get used to the new size. 😜

  • SummerSun
    SummerSun Member Posts: 47

    Noonrider, so sorry to hear what you went through so close to Christmas, but, happy to hear that you are feeling better. I hope you get your energy back soon!

  • aviva5675
    aviva5675 Member Posts: 836

    I think in general the whole TE thing goes well for most women. This thread is a great one to come to and get basic info and hear good experiences. When I was getting read for bmx/te I read the "Trouble with TE" thread, or whatever its called, and became terrified of how it was going to be. It turned out to be no where near as bad as things I read there. Glad this one was started to present a place to read about the experiences most women seem to have.

  • noonrider
    noonrider Member Posts: 203

    Yeah, I'm not doing so well now. My incision opened up yesterday. So ready to be done with the BS.

  • anothernycgirl
    anothernycgirl Member Posts: 821

    Noon - wishing you a SPEEDY recovery!!

  • knmtwins
    knmtwins Member Posts: 438

    I've had 1 fill since surgery on 12/2. Was supposed to get another on Wed, but due to swelling under arm on left side the PS's Nurse Practiioner, who you see, said we will wait till next week. The left side bugs me more, especially in my back, near my underarm. Might it be that I use my right arm more, so it is more 'stretched'???? I can raise both in front and up the sides, but the left is more sore although my vertical incision is not fully healed on my right (I had inverted T, as I was having a reduction also). I just get scared about what is going to happen. All these posts about infections and ruptured TEs. YIKES How do you even know if it ruptures?