TEs. A Beginner's Primer
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so today is the first day I'm not seriously asking why I've done this to myself. I've done a great job of sleeping and staying on top of my my meds. For the most part now I'm just uncomfortable and I'm barely experiencing "pain" although I am very sedated most of the time. I only get steering pain toward my upper right shoulder when I strip my drain line. I find that very weird. Thank you all for you continued encouragement and advice. I've got my first follow up with my PS tomorrow.
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Hang in there, Ringelle. I was seriously so upset with the TE in the beginning and swore I could just rip it out of my chest . Now I barely notice it.
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I am so happy to hear you are all doing well. My sister is in exchange surgery this morning and i will be next month.
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I second Molly, hang in there Ringelle. It sounds like you are on top of the pain as you should be. Just remember not to try to do anything which requires moving your upper arms and shoulders. T-Rex equals lower arms and hands only with no lifting. I did not even strip my own drains, that was dh's job, as well as opening my med bottles for me. It does get better.
Hugs Scottie
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ringelle - so happy procedure went well! I haven't checked in this week, see you're in chesapeake. I'm in richmond.
Special K- I did not realize 100mls was a lot. I feel fine now. It has been almost 3 weeks now. I did find out that there was 120 put in at the time of surgery, and the expanders are 550. I go next Friday for my 2nd fill. May ask him to decrease the amount. I am trying to be patient! Slow and steady wins the race....or something like that.
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BethL - 100ccs is a large fill, but since your expander is not yet at max fill, or exceeding it (correct?) it may not be as uncomfortable for you. Also the laxity of pectoral muscle and skin helps determine whether, and when, you feel discomfort with fills - some can handle larger fills with no problem, but it usually becomes more apparent the farther into the process you go. Just know that you are in charge - if you are feeling too much discomfort let your doc know and request a smaller fill.
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first time user of breast cancer org! Not sure where to post in this thread so randomly picked one...
I have had a TE for 15 mos and am scheduled for replacement in 2 wks so am getting cold feet. I am quite happy with my TE. Is there any reason to have to replace it? My PS said 1 yr but I did not think to ask why only 1 year..
However.. I have an enlarged lymph node my BS wants to remove. She thinks it is due to a reaction to the implant so that might be the reason to proceed with surgery.
Any thiughts or experience is greatly appreciated.
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haileva, Welcome! One really good reason to have your TE replaced with an implant is MRI's. My BS told me I have to have my surgery before next December when I am due for an MRI.
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hello! Not sure how I missed this thread but I'm glad I've found you now. I had a UMX (right) last March and on Feb 4 this year I had an PMX (left) with bilateral tissue expanders placed. I spent one night in hospital and have now been home for a week. My right side (cancer side) is fine; the left side is still quite tender but I suppose that is to be expected and my PS did say she had to do a lot more suturing on that side. While I'm still flat, no fills yet - think there's just 50cc in there right now, I think I can see the shape of things to come, provided they expand nicely. I'm actually a bit lop sided still as my PS saved more skin on the non-cancer side. I feel like I'm wearing a steel tight underwire bra (on the left at least) and the mother of all underwires is digging into my ribs!! I am pleased to read that this may ease as the expander gets filled... I go back for my first post-op follow up next week and hopefully my first fill. Many thanks for all your stories and advice. I've read through the whole thread. So far so good...fingers crossed for no TE trouble!
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I had my last dose of antibiotics yesterday. I'm feeling pretty good. No more redness nor constant dull ache in my right breast. Although I think there may be a pocket of fluid at the site of the infection. It feels funny only when I move the right certain ways.
At 3.5 weeks from exchange surgery, and 2 weeks from infection, I still can't quite sleep on either side yet. So things are still settling and healing. I didn't do any of the shoveling this winter. I am building up my ROM and the weights of things I carry (grocery bags and laundry).
Despite my infection and pocket work, the exchange surgery is still an easier recovery then the MX. I hope that is encouraging for those who are doing reconstruction.
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CatsRus, welcome! Yes, for me the TE's became much more tolerable once I had fills. Mominator, good news on feeling good!
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Welcome CatsRus!
Happy Friday everyone. That is great news Mominator. Happy to hear that the exchange is easier than the MX I'm counting down the days until mine. Only 10 more sleeps.
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CatsRus: you and I are one day apart in the process. I had my BMX August 13 and had my TEs placed Feb 3. I also spent one night in the hospital (very grateful for that). I seem to be doing well. I had a great day last Monday when I went for my first follow up but haven't had a day like that since. The first 4 days after surgery were miserable for me. I hated myself and kept wondering what I had done. Now, I'm just i the sleepy/uncomfortable stage and know that each day is a bit better. I had my right drain pulled today but my left drain keeps pulling shenanigans on me. I've thought twice that it was ready to be pulled and then in 10 minutes of my empty it fills up like crazy! After my BMX one of my drains malfunctioned and we pulled them both after 5 days - I ended up with a sermona that drove me nuts so I'm much more patient with these drains. I thought having the drain pulled would be more comfortable but only a bit. I was amazed that the pull wasn't painful - actually didn't feel it. I did heavily medicate myself before hand. LOL The band of this surgical bra does give me ALOT of discomfort. Sometimes I wonder if it's just too small. PS said I could wear something else but I have no idea what that might be and I'd rather go through this than go shopping. About once a day, I give myself about 10 minutes of complete freedom. My PS won't let me shower until the drains come out. I thought that was going to be rough but I've managed to make do with bird baths, baby wipes and dry shampoo. The best is my neighbor a few houses down has a salon at her house and she has been washing and styling my hair every few days. That means more than anything. Hopefully you continue to make great progress. Keep up posted
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Yeah Tina! Can't wait to hear about your exchange!
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Mominator - glad to hear things are progressing in a positive way.
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Ringelle... no drains for me [don't hate me...lol]. I felt the same way as you about day 4...'what have I done????' but day 5 I started to feel better. I could shower 48 hours post surgery so have been taking long showers and I take my time drying off so i can enjoy that bit of time without the surgical/sports bra and ohhhh it feels sooooo good! Good luck with your recovery.
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Warm welcome to haileva and CatsRus! Looking forward to getting to know you. CatsRus: I'm impressed you've read through the whole thread.
Ringelle: if your bra is that uncomfortable, it could be because you are swollen and the bra is too tight. Can you see the outlines of the seams on your breasts? I could even 2 weeks post surgery. The nurse put me in a bigger bra. Ask your nurse for a bigger bra.
Tina, yep, looking forward to your exchange.
Thanks Molly, Tina, and Ringelle. It truly gets better every day.
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thanks Mominator for the welcome. Yes, I read all the pages, it took a while but I've been doing little else than read lately 😊
Ringelle, I agree about the bras being too small at the moment. Pretty sure it has to be because I'm swollen as today I wore one of my regular usually comfy mastectomy bras (I forgot to wash my sports bras and surgical bra I bought especially for after the surgery) and the band is really tight around my ribs. Think I may have to shop tomorrow!
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Question for those of you with TE experience My PS has given me both Norco for pain and Valium for muscle spasms and muscle tightness. In the hospital I was given both at their recommended intervals. At home I've been taking more Norco and occasionally taking the Valium. I really want to cut down on meds but I'm not really sure what to take when. I have spots that are causing me pain/discomfort. How do you know the best med to take
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Ringelle. . .PS kept me on mus clear relaxers for more than 4 weeks. I had consistent nerve pain though. It all depends on what you need. My PS wanted me comfortable and I have very tight pecks so it was harder.
Glad you're recovering well Mominator. Welcome Catsrus. I got a second front closing bra on Amazon after BMx.
Scottie
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wWelcome catsrus. Mominator so glad things seem to be going better for you.
Ringelle, have you tried going with just the relaxor? But just do what you can.
Sorry I've been missing in action. This thread fell off my favorites somwhow. And I just got out of the emergency room today. Turns out I have kidney stones. Who knew. I feel like a wet sponge and am on 2 more meds. Whee. LOL.
Thanks to Specialk for picking up the slack for me!
Much love.
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Moonflwr, sorry about the kidney stones. Ringelle, I have no advice for the meds.
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Moonflwr, I'm so sorry about the kidney stones. I hope your recovery is smooth.
Ringelle, It's still soon, only 11 days, after TE placement surgery so you may need both medications. However, it sounds like you are having more pain than more muscle tightness/spasms? If so, try taking just the pain medication and see how you feel. Or try taking them at different times. Say they're both every 4-6 hours, take pain med at noon and muscle med at 3 pm. Did one or the other give better relief?
In any case, keep a log of the medications you take and how you feel. You may be able to start spreading out the doses to wean yourself off them. This is how I've weaned myself off of medications.
But it all depends on how much pain you've having and how your body is healing. Also, TEs are probably going to be uncomfortable anyway as their job is to stretch your muscles and skin. Some people feel it more at first placement, others feel it at fills, some feel relief at fills. Every body is different.
I had mine placed during NS, skin-sparing MX surgery and filled 420 on the table. I had plenty of skin, but muscles needed stretching. I was mostly numb at first, and then pain from the MX. PS did a 60 ml fill at 5 weeks and that was hard for me. My left TE had shifted and both TEs were hard.
You've already been through a lot of surgeries and I think you're one tough lady. This may be challenging, but you've already got through the worst.
Much love,
Mominator.
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Great advice on the meds Mominator.
Oh gosh Moonflwr, I'm sorry to hear about the kidney stones. I've never had them but I hear the pain passing one is horrible. Good luck. I hope you are not in too much pain.
Ringelle I had my TEs placed at the time of my MX. I'm not a fan of taking pain meds so I only took them for about 5 days after surgery. I relied on valium and ibuprofen. My PS did not give me muscle relaxers. I got through the fills with ibuprofen and as I got closer to the end of my fills i needed the valium too. Hang in there..... like Mominator said everyone is different. You may feel relief with your fills. And you are one tough lady.
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Moonflwr - sorry to hear about the kidney stones I hope you recover soon
Thank you all for your feedback I experimented a little yesterday with what and when and I think I have a better understanding. I also realized that I really have spaced out the meds quite a bit - the constant grogginess was communicating differenty I also realized that it has probably not helped that I've been forgetting to take my Thyroid meds since surgery. My routine is so throw off I had totally forgot about them. That's not going to help with fatigue and the foggy head.
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moon - hope the kidney stone ordeal is soon over - no fun!
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Get well soon Moon. I'm having my gallbladder scanned on Tuesday.
Scottie
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Moonflwr - sorry about the stones, Hope I never have to go through that. My mother dealt with them a few years ago and was in a lot of pain - I'm sorry you have that to deal with that!
I get my 2nd fill this week! I am so over these expanders!!! It is better than before. My non-cancer side, right, is what is bothering me. I'm thinking it's because I'm right handed and just use that side more. It's a weird shape too. There's 220 on each side currently. Yesterday I noticed in the mirror that there was what looked like a lump on the inside of my incision (vertical incisions). I freaked when I saw it, afraid to touch it. Yes, I still can't touch near my incisions after 2 months. It doesn't freak me out or anything, it's just numb and it feels extremely odd - ok, maybe it does freak me out. I finally got the courage this morning to touch the lump, and had to laugh. It was like a little bubble that I could push in and it popped out. It was more of a relief laugh!
Hoping the fill this week isn't too much to tolerate for the weekend. I'm only doing every 4 week fills. Is that pretty common?
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Hi BethL,
I know exactly what you are talking about being able to push the bubble in. I had that too when my expanders weren't at full capacity. I described it as feeling like a plastic water bottle when it is not full and you squeeze it and it crinkles. It's a very odd feeling.
I got 60 cc's every 2 weeks and that was perfect for me. It all depends on what you are comfortable with. I liked the low and slow method.
I'm scheduled for my exchange surgery a week from tomorrow. I'm looking forward to getting rid of these hard rocks.
Good luck to you. 💜
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bethl - the fill schedule varies from doc to doc, but four weeks between fills is a bit unusual. A weekly small fill, or bi-weekly slightly larger fill is more common. Each patient is different and has differing needs and tolerances, and each doc has scheduling concerns and patient load to consider. The farther you get from surgery usually the more comfortable you will be with fills, the period after surgery with the first few fills can be problematic due to continued healing. A lot of people are uncomfortable when maxed out and waiting for exchange also, but it is a different type of feeling than early on. Good luck with fill number two!
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