TEs. A Beginner's Primer
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Carrie-i had what I cAlled "hot poker" pain on side of te. It was very painful. PS said it was scar tissue. I massaged it and after te's were overfilled it has gone away.
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Carrie: If it's continual/not letting up then call the ps office. Call for sure if you have fever, swelling, or redness. I just got over IV abx of 3 weeks because I had all 3 signs along with the pain.
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re: fills. They are really not bad, I didnt have a pain issue. Often the port was in an area with no more nerves, so didnt feel it. Honestly, the worst for me was seeing the needle they use. Not gonna lie: its huge. But thats only to get the fluid to fit in, the actual fill was just fine.
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sknitter: yoga saved my life after BMX. My ps was amazed at my range of motion. I just had exchange surgery yesterday and I want to go back to yoga right away (I'll ask my ps first don't worry)! However, it isn't just any old yoga class, obviously. I did relaxing, restorative Hatha Yoga where they do the poses very gently and slowly. Look for the classes that are recommended for older and pregnant people, and listen to your body. I told the yoga teacher ahead of time I was post BMX so she knew to come over and help me modify poses (I couldn't lie on my stomach as an example). I can't recommend it enough. My ROM improved overnight.
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carrie - hot poker type of pain could be the TE pinching a nerve, whereas all over aching type of pain could be muscle or rib bruising. Are you done with fills? Sometimes additional fills help lift the TE off the nerve - some have found that the further down the road with fills that sharp pain subsided. Sometimes nerve pain is better handled by meds like Gabapentin, Lyrica which are better at alleviating that type of pain than pain meds are. Ask your PS about this.
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I concur with SpecialK. In my case, the nerve pain presents as a burning and sometimes cutting pain. Hot poker may be a good description. MO put me on Gabapentin after BMX and I still on it as my nerve pain has continued after Ex. I have very tight pecks and I requested the largest implant PS could get in with limited fills. The good thing about Gabapentin is that it also works on the hot flushes from Tamox and lupron.
Ispy, take it easy for awhile. I this wasn't as you planned but welcome to the squishy side. I have been looking for a gentle beginner yoga class. Right now PT 2x a week for ROM.
Scottie
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With all my delays, the latest being infection, I have yet to not only start chemo but fills as well! Everyone is so ahead of me from the time I had sx.
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Is anyone else having issues with The tissue expanders making skin feel "sunburned" or "raw"? Unfortunately Those are the only ways I can seem to describe it. It hurts when anything brushes up against it; clothes, post masectomy bras....Anyone have any recos on how to alleviate this? Some type of cream or ointment
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NYNJGirl3, YES!! That's exactly how I would describe the feeling of TE's after my DBMX. It felt like the most severe sunburn you can imagine. Not really pain just a raw, burning sensation. I'm not sure how far out you are from your surgery but after about a month it subsided somewhat but has never completely gone away and flares up at times. I'm scheduled for my exchange on Nov 11 and can't wait- although I'm not sure if the sensation is from the TE's or just nerve pain from the surgery itself, so it may not go away. All in all I can live with it though!
Freeland
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Yes, I had that feeling of sensitivity and started using calendula cream on my skin. It's so much better though my skin is very tight over my ribs after the last fill so I am using the cream there too.
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NYNJGirl3 and Free123 - Ladies, your posts just caught my attention. I went through this exact thing after my BMX in August of 2013. I realized early on that my skin had become so hypersensitive to anything at all covering my chest that it was ridiculous. (Apparently this is caused when the skin is stretched at a faster rate than normal, and I've discovered since then that it's actually a rather common - and thankfully temporary - condition.) Every kind of fabric hurt - it all felt like I was wearing sandpaper to be honest. The softest cotton, silk, satin, it didn't matter - nothing worked. So I wore as little as possible around my house or when I had to go out, and then my PA intervened and suggested lidocaine cream (do NOT let them give you the gel - that stuff dries and peels off in sheets like dead skin and is very messy and ineffective). You'll need a prescription for the good stuff - but a 3% - 5% solution should do the trick. I used the lidocaine cream on my chest an hour before I left the house and then and only then could I get dressed and be comfortable for about four or five hours. The skin hypersensitivity lasted about a month and then one day I woke up and it was gone just as suddenly as it had started. Weird I know, but it's the truth. So I don't know if the cream will help you, but it certainly was a Godsend to me...
And remember that lidocaine is a topical cream, so all it does is numb the surface of the skin for a few hours. It shouldn't be used all the time (I only used it when I was leaving my house which I did once or twice a week) and overuse can have serious health consequences so you need to use it sparingly. I've also read on the boards that some people got lidocaine patches from their PS... I certainly hope this information helps you a little because I remember vividly how uncomfortable that hypersensitivity can be.
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ugh, thank goodness I am not alone in this! I thought I was going crazy. I'm about 2 weeks out of surgery so I am hoping that this will ease with time. Thank you free123, molly50 and AZ! I will definitely look into those creams; my first fill is hopefully the 20th so maybe my dr can give me something then
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Molly- do you mind posting the link to the calendula cream you use? Thanks! Haven't started fills yet but I want to be armed in case...
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Just got back from yet another fill. My PS said he will continue with filling 50 cc's at a time (once a week). So far I have 350 in the left and 300 in the right.
I was a D/DD before BMX, so that is what I told him I wanted for my reconstruction. I'm not sure I can stand it for that long though. I hate these expanders! They are just so uncomfortable! I was a little discouraged yesterday when I read that someone was at 850cc's and is now a small C. OMG! Can I do this? That seems forever away, and each week I am so uncomfortable for a day or two.
I could use some words of encouragement! At this point I feel very bummed, and am wondering (once again), why I opted for reconstruction! Will I ever be comfortable again? Will I ever be able to sleep in my bed again? Will I ever stop looking like a freaking alien from another planet? These scars, and no nipples look so foreign and so bizarre and feel like something that doesn't belong on my body!
Sorry - I guess today is one of those days. You know, the good days and the bad days....this is a bad one. Makes me want to cry again. Makes me want to crawl into a hole of self pity. I hate these low days! I want myself back! I want to feel like me again. Do I need to rethink who I am?
I'm going to try to find a good cry movie to watch. Maybe that will help me get some of these feelings out.
Again, sorry to be such a downer! But thank you for allowing me to vent.
I just took a Valium so I'll be in Lala land for a few hours. Hopefully I will wake up feeling better emotionally.
Fingers crossed!
Linda
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lharry - you always have to keep in mind that expanders, and fill volumes, are fitted to the person's height, weight, and physique. Expanders come in a variety of sizes with differing fill volumes based on what your PS feels is appropriate for your body and wishes for final outcome. 375cc on one person may equate to a D cup and 850cc on another may be the same, it depends on their individual physical stats and what size expanders, with what fill volume, they had put in at the time of surgery - this is not one size fits all!
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I second what SpecialK said! I found expanders to be horribly uncomfortable, too. I ended up getting fills to 340 on the left and 375 on the right, now I have 500cc implants and I'm a D cup. Just keep reminding yourself that the expanders are temporary, they will come out!
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I second what SpecialK and SummerAngel said!! LOL I was filled to 360 and got 590 implants...and I am now fitting in a D bra.
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AZ85048 I am waiting to hear from my bs today as to a surgery date for a prophylactic bmx with immediate recon with TEs. So i am just starting this journey. Hoping surgery is soon -nervous! I am a DES daughter too!
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You can do this! It sucks, yes! But it is temporary. Look at yourself in the mirror and tell yourself you are beautiful. You are beautiful and strong and will get through this. xo
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My TE was filled to 420 and my PS said it is easily a full C cup. It really depends on the TE, the person etc.
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Okay, thanks! That helps me to see a better, shorter end to this!
I have also decided that as of today, I am going to stop complaining about the expanders. I think if I stop whining about how uncomfortable they are, it will be easier for me to deal with them. As it stands, they are a constant nuisance, but if I am constantly thinking/complaining/whining about them, then it's always forefront in my mind.
I will continue to take my pain pills as needed, but no more complaints from me!
Hello positivity!
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Lharry, yes I kinda had to do the same thing! It does help. And mine do feel better. Not great...but better!
Here's to positivity!!
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LHarry, I was only filled to 250 and have 300cc high profile implants. I'm a B-C now. As everyone said fill volume depends on the individual.
Scottie
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Lharry and Free - I am with you. I feel like I am so over the expanders already and feeling not like myself. I haven't even started my fills yet! Seems these next few months are going to be long and unbearable. I'm going to try the whole positivity thing!!!! It's just a blip on the radar right????
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Hi all! As a newbie waiting for my bmx and TEs i have to say it all sounds absolutely unbearable. Doesn't anyone have anything calming to say? I am really getting nervous and i am usually a very unflappable person who can handle things. Are TEs really that bad?
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Anyone doing fills while on chemo (not on same day of course)..
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new_me -- my expanders were fine. They looked weird and that was a big adjustment for me. They did not hurt except for a couple of days after fills and my ps was very aggressive (100cc each fill). I was unable to sleep on my side but that adjustment happens fast enough. Once my fills were done, I actually told my ps that I was good with the expanders and was more nervous about the unknown of exchange then keeping the expanders longer. Everyone's body is different. Most important thing is to try to stay positive and remember it is temporary.
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new_me-one step at.a.time! Focus your energy on a successful bmx. Then you.can focus on te's.
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I only have one TE but I was very uncomfortable with muscle spasms until I got my fill. Now it's not bad at all.
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