May 2016 Surgeries

Papillon1, you are not alone, I feel worse these past few days with the nerve pain in my hands, than I did right after surgery. And my incision and missing lymph nodes are not what hurts. I've had to go back to my recliner because I roll onto my hands during the night and wake up on fire. Dr says it's the nerve endings from the lymph nodes being taken that are coming alive.

Whatever it is, I'm in some serious pain. Went to the LE clinic and no signs of LE, yet.

ranting...

Valistim52, try wrist braces from your local pharmacy. Get the ones with a stiff internal brace used by people with carpal tunnel pain. They really help as they prevent you from bending the wrist at night.

I used them for months when having severe nerve pain in both hands. Really helped! Cost about 15 bucks at Walmart or CVS.

GreyKat, LRGO2016 , Maya15

Thanks so much. I'm doing all three. Called my MO and she called in the garbo? got the sleeves thow. n tis morning and am wearing it . Made the towel blockers. Thanks so much. I love you ladies.

It also helps because I did so well and my incision is doing so good, and now this. Greykat, got up during the night and read your suggestion, made the towel blockers, and was able to sleep on my back and not roll. Woohoo. Thanks so much. You guys will never know how close to the cliff this was making me go. I mean it when i say sometimes this thread is a lifesaver.

Mom4four when I had radiation 24 years ago, (other breast) anything with Vitamin E, really soothes. I also have an aloe plant I will use the oil from that as well. I start this tuesday.

MyToyStory2 in your pocket. Hope you are feeling better soon.

Momof6, I have some argan oil in a little bottle and thanks for the tip. I've used it on my head and eyebrows which are growin glike crazy.

Val

thanks for the hugs.

And get well valstim, sorry you are in pain too.

My skin still hurts and burns... Makes me feel sick sometimes. Am ok if I don't move at all but that's not so practical...

Why the burn?? Some is stitches at the sides but all over?.. Muscle reattaching? Scar tissue forming? Nerves causing issues

Tired too. Slept three hours this afternoon!!

Valstim - glad I could help. I hope your pain improves!

Papillon - I had horrible skin burning feeling, bad enough to make me nauseated, particularly in my underarm area, for five weeks before it started to noticeably improve. I figure they basically skinned us from the inside out, so the surrounding skin is raw and the remaining nerves with feeling are all on fire. At least that's what it felt like. Just hang in there and it should improve in time.

Come to think of it, around week 3-4 the nerve pain across my chest was almost unbearable, but that improved - it just got worse before it got better. Just hold on and ride it out. Can you take some anti-inflammatory med like ibuprofin if you have some?

StonyPony - yay no radiation!!

I had my surgery on May 10th. It was unilateral mastectomy with latissimus dorsi reconstruction. I still have a drain in the back incision. This is driving me nuts. I can't go to work with the drain in, still can't drive and still very uncomfortable. I am doing as little as possible. Any helpful hints to slow down the drainage so the drain can come out.

mytoystory2-sending you gentle hugs and rooting for you! I had cellulitis after I came home post op (went to ER).

Thinking of all you ladies often...so grateful to have somewhere to go where we all know this journey : )

Went to first fill this week, I was really dreading it and thinking it would be horrible. Turns out it was quite painless and I worked myself up over nothing. My oldest daughter drove me and held my hand during the fill : ). Usually I'm pretty tough, but this BMX has been rough.

ouch! mytoystory2

Im glad they got the infected TE replaced and you are on the mend again! Sounds like your surgical team is rough with you. I would ask them how the cuts happened. That is not normal in my experience. Next surgery, ask them to be extra careful and remind them of the previous incidents. Suggest they use a smaller breathing tube. I sing in a band. When i mentioned that to my surgical team, they said they would use a smaller tube to minimize trauma to the vocal cords. Dont know if they were "blowing smoke" about using a smaller tube but i only had a mild sore throat for a few days after. No cuts or bruising. And definitely ive never had my eyes get scratched during surgery! Your experience is awful and really not acceptable.

You are going through enough already, you don't need additional injury on top of what you are already experiencing.

Of course, I do have a really "big mouth" so maybe that's why I've never had a problem...

And bonniebleu,

I too was nervous about the fill process but 5 fills along the road (340 mils) they have each been pretty simple and painless procedures. I think the key is to take it SLOW. My PA does the fills. She targets to put in about 50 mils each trip but the amount varies with my guidance of how comfortable I am. We tried 60 mils one time but my skin started to bruise, so she removed about 10 mils immediately. Now we have settled on 40 mils each trip as my target.

I find myself tired after the fill and "tight" feeling in my chest but not in any real pain.

I pretreat myself before my fills by taking a muscle relaxer, an OTC tylenol, and my prescribed antibiotics. This combination of meds and slow fill approach seems to be helping me manage this process very well. My tiredness may be simply because I took a muscle relaxer, now that I think about it. But I will continue to take it because during one fill, my chest muscle started to twitch and tried to cramp. I highly recommend this approach if your PS agrees. Talk to them about your concerns. They should be willing to help "ease" you into your new "boobs".

Good luck!

@Bonniebleu - I am doing fills with zero painkillers or muscle relaxers or whatnot. If you're nervous, do a smaller amount to start with, and prepare for stiffness and soreness the next day. I have - and this is with no drugs - one night of terrible sleep, two days of pain and stiffness and about three days of impaired mobility, but I just keep doing my post-surgical stretches and by day 4 I'm back to looking in the mirror and calculating how many more fills it's going to take.

You can always tell the nurse or whomever to do less, or let you work up to a bigger fill. And if you're able to take the muscle relaxants or painkillers you'll probably have a much easier time. But then again, I tell you this to let you know it's tolerable and doable drug-free if you stick to smaller fills (30 ccs or so) and tough it out the first couple days.

@Papillon - yeah, that feeling is misery, but as you heal up your nerves will quiet down. I am 6 weeks out and still having sparking nerve pain several times a day, and I gather that's just how it's going to be (not thrilled). My PS nurse said her friend is more than 2 years out and still has pain, and that's just how it happens sometimes. That isn't particularly optimistic but at least it's honest. But at least for me, the horrible on-fire-burning-screaming-can't-touch-hypersensitive-chest-skin healed up. You've just got to hang in there. I've heard that (dry) massage, over time, can help the area to stop being so oversensitive, if you can bear it.

And everyone, I'm 6 weeks out. Hear that? I've crossed the finish line of supposedly total recovery! HAHAHAHAHAHAHAHAHAHAHAHAHAHAHA! I'm going to take my injuries and other problems from this surgery and go sit in the corner with my sarcasm and frustration and grief.

I'll be 6 weeks post op on Thursday 😊

Doing good. After week 3 1/2, when the drains were taken out, I really started to feel better physically. I still get the stabbing pains (nerves) sometimes but much less often. Weird how it will feel as if it's a pain in my nipple but I don't have any 😳.

The PS said it could be 5+ fills before I'm done. My first full was 60cc. I took Motrin beforehand and just felt tightness for the next 24 hours.

Sending good, happy healing thoughts to everyone😊

Hello All

I start rads today, though I'm having some pretty significant pain in both hands. Have appointment with LE clinic and PT.

Funny 4 weeks post op on Friday and my surgery and drain sights do not hurt. But my hands and wrist are awful.

Valstim - hope you get the help you need for your hands. This nerve pain stuff is awful.

Does anyone have any advice for eating while on a drug that makes you nauseous and everything taste metallic?

after a week of burning pains I managed a brisk 2.5 km walk Wearing two sports bras is the key!!!

SpecialK and Moreshoes, Grandma3x. now that I think about the symptoms in both hands, it sounds more like neuropathy after my taxol. I was told it can take a while to surface. It's awful. I can't imagine what it would have been like if I'd not iced my hands and feet. I will see my MO next week. Also have an appointment the lymph edema clinic with a PT to do some measuring and make sure I'm not getting that as well.

First day of rads was grueling as they had to get more markers, and positioning. The rads itself I didn't really feel anything and they gave me cocoa butter to put on right in the changing room.

Yes Moreshoes, rad sisters.

Thanks Greykat.

Everyone keeps telling me to remember I'm 4 weeks from surgery this Friday, and not totally recovered. Though I'm having rads. hmmm.. recovered enough to do Twister every day.

Wow, so much to catch up on!

StonyPony, did the drains come out on Monday? Fingers crossed! And congrats on no rads.

HelenWNZ, three weeks out is really not that long. I understand it's difficult to feel bad for so long, but time will help.

sml, I don't think there's anything you can do to slow down the drainage, unfortunately. The drains are doing a job – just try to be patient.

myToyStory2, fingers crossed the replacement TE does the trick for you! My ID doctor insisted that if the TE didn't come out completely that the infection would never clear up, so I hope the replacement works for you. And what the heck is up with your surgical teams? The fact that you were injured twice during surgery is just nuts to me. Seems to me that should be reported somehow, though I wouldn't know to whom. Kind of scary.

Bonniebleu, glad your first fill wasn't as bad as you thought it would be. That's always a good surprise!

Papillon1, I'm with you on the weight gain.vvI had lost 25 lbs. before my BMX, and I was maintaining really well there in the first few weeks post-op, despite eating like a cow – I think my body was just so busy working to help me recover that I was getting away with it. Now, it's starting to catch up with me! Haven't stepped on a scale yet but I'm sure I'm up at least 5 lbs. if not more. The good news is that I'm starting to feel well enough to exercise again so I'm back on my stationary bike as of this week and I'm back to a better diet.

Valstim52, sorry about the hand pain! And good luck with starting the rads – sorry the first visit was so grueling and I hope things get easier.