continued Tissue expander pain!!

HI All - My heart goes out to you gals. I have been there - surgery Sept 14, TE's and had my last fill last week. It was very painful getting the fills. My breasts were numb but raw..burning pain and tight. The nurse said that it was a good sign because it meant that you were getting feeling back. I feel better now so there is light at the end of the tunnel. Just waiting now to be scheduled for exchange. BTW - my PS did not prescribe anything stronger than Ibupofren. 

Colette - yes I had the same pain but it also felt like I had a tight strap wrapped around my rib cage.

Hi all, I know things get better with time and the light is there, it really is! My Oncotype Score is 12, (no chemo) so now I can really get on and look forward to Diep recon, maybe sometime in December. After my last fill 9 days ago, I was tight snd sore again, but today it's OK. So actually kind-of looking forward to the next and getting it over with. I'm not taking any meds now and try to just keep off them. It's a crazy thing to say (reading the DIEP threads) but I want to get on with it and start next year all new.

alsgal:

Absolutely not crass to ask about pain meds. And you shouldn't have to ask. I had my expander placed at the same time as my mastectomy so I had a breast surgeon and a plastic surgeon in the OR. The breast surgeon differred to the PS for all pain management. She gave me meds in the hospital and sent me home with percocet (I think) and adivan and maybe even vidocen. She explained that percocet was for pain from the surgery and that adivan and vicoden were muscle relaxers that would help during the expansion process. This was back in Feb and it's all kind of a blur, but I'm sure I was on pain meds (at least at night) for a week or two. And I used the muscle relaxers for the fills esp the 3rd, 4th and 5th one. 

It's also normal to be nervous, but you'll get through it. I am scheduled to have my exchange surgery on Wednesday and, even though I can't wait, I'm extremely nervous and not looking forward to the recovery. That said, I feel really good now and know that it's only a matter of time before the surgeries and treatment are behind me and I can get back to 'normal.'  It will be the same for you.

I'll be thinking of you.

thanks guys, this makes me feel much better. I am excited about getting this process started so that I can get my exchange surgery behind me. I feel like I've been on a six year bad trip. I got bitten by a brown recluse spider on the breast six years ago and the debridement found ductal carcinoma (i had a lumpectomy and radiation) but i spent the last six years in and out of the hospital due to huge sores on my breast that the dr always called shingles. I finally sought another opinion after spending 8 months in the hospital and they removed my breast the next week, turns out i had inflammatory breast disease. I left my job two years ago and the night before my mastectomy my son told me he couldn't handle the illness anymore and walked away. I just want some sort of normalcy again so I guess it seems sort of trivial to worry about the pain but my general surgeon really let me suffer with pain because he said one healed better with meds. Ya'll have helped alot.

codavis good luck next wednesday!

Hi Kate~I also had pain for a loooong time.  I think the expander was sitting on a nerve.  I had my expanders put in in 1998 and now, will go for the DIEP procedure in South Carolina.  Implants just were not right for me.  I was never the same size on each side and had to wear those horrible prosthetic bras.  I can't wait to get these things out.  Some people love their implants and have no pain, but my body just didn't like them I guess.  Some people just breeze through mastectomy, but I had terrible pain for about 2 or 3 weeks.  I wish you the best.  Let me know how it turns out.

Just posted this in another forum, but I am now pain free, and no meds since about 4 weeks. I did go off the muscle relaxers after about 2-3 weeks, but went back on them again, just 1/2 pill at night.

Hi all, I am now 8 weeks post BMX and fell 100% better. I have had 2 fills and now sit at 450cc's, and PS wants another fill on Dec1st, and then I'm clear to go for my DIEP surgery, which I guess will be asap in the new year now. No chemo (11 on oncotype DX) so clear to move on! What a relief. I am now very mobile with no pain, and try to do some exercises every day to stretch things out, that helps. I just want to move on now with the next steps, can't wait! So for those just starting on this journey, it really does get better. Good luck all.

Hi alsgal, sorry you're in so much pain.  I had my TEs placed at the time of my mastectomy, so I couldn't distinguish which was causing all the pain, but people told me that the TEs were causing most of the pain.  And I have to say they continued to cause pain/discomfort until I had my exchange surgery a couple weeks ago.  Some people don't have that much pain with the TEs (or only on their fill days), but most find them uncomfortable.  Your doctor should definitely give you more pain meds if you're in that much pain - pain is not your friend.  I took pain pills for longer than four days - luckily I didn't need to take them as often after the first few days - but I still needed them.

You should go back to your doctor and have him check the knot under your arm - and prescribe you more pain meds (even if it's a lower dose or you take it less often).  Your TE could have shifted.  One of mine did (I had BMX) due to all the scar tissue from my multiple lumpectomies, and I've read of others whose have shifted.  If the spot's getting bigger, it sounds like you might have fluid build-up and/or swelling and you should make sure you don't have an infection (I had a lot of swelling and redness and it turned out to be a staph infection - but yours might just be the TE shifting).  Hope you feel better soon!  Keep us posted.

Hi TifJ, hope you are feeling better. I really experienced pain with the surgery and first fill but now almost three weeks after TE placement and i'm at 425cc's the pain is finally bearable. I have found that when all else fails i put a heating pad on the lowest setting with a cover over it on my back and for some reason that helps. I'm having the exchange surgery on Dec 28th but after seeing that you are waiting til feb i'm wondering if my doc is rushing it. I also am tired of the iron boob but like you at 46 i didn't want to be lopsided forever. Hang in there and believe me it does get better.

I am so glad I'm not the only one. I keep feeling a burning sensation. I'm 5 weeks post PBM and the first time I went for  a fill, they said I was too green, so to come back in 10 days. Went on Monday and my skin was splitting in one spot, but the PS said that the alloderm was holding so to put 25 ccs in each one (50ccs was put in each one during surgery). And yesterday I was in so  much pain it was ridiculous. I was back to not being able to reach or pull anything, and that was only 25ccs. Now I'm worried that if they try to fill more than that, it's going to be even worse. The corners are sticking out, so I can't sleep on my side, and they just hurt. All the time. As the PA was wiping off the iodine from where she stuck me with the needle, I said it hurt. And she said, "really?" like no one has ever said that before (right over the port-ish thing where they fill it). I said the whole thing hurts. I can't even have covers laying on me. I have pillows stacked up so that the covers are over me but not touching me, because it hurts. Finally after I got done driving the kids around (short errands) I got home and took a Vicodin and slept all night for the first time since going off the pain meds on Thanksgiving. I talked to some people beforehand and I thought I was going to bounce back more quickly and thought since I had chronic (back) pain that I'd have a higher tolerance for pain, but apparently that's not the case, it's just pain added to pain. I can't wait to get through this process and be done with it. I'm pretending it's a baby and all the discomfort of that (nausea, trouble sleeping, pain, irritability, weird feelings), and at the end of I'll have new boobs. And hopefully it won't take 9 months, only 3 more.

If this was directed to me, yes the PS saw me. The PA said she didn't think there would be any fills on Monday, so she went and got the PS to confirm. But he said to give me 25ccs in each side because the Alloderm would hold, and he didn't want to lose the elasticity of the skin, since we'd already put off the fills once because of my nauseous reaction to the narcotics (apparently it was the Vicodin). It only was one day after because yesterday seemed okay. Though when I step outside in this cold, if I start shivering, the muscles start spasming. Does that happen to anyone else? I guess they're just contracting in the cold but man, it hurts.

I finished my fills on Wednesday and this time I had no pain to speak of, just the soreness around my ribs. My exchange surgery is scheduled for December 28th and I am so happy to have this behind me. The cold makes me shake like crazy and while my PS who I am convinced is on something, says it is in my head but after reading what so many people say I'm convinced that it's definately the cold weather.

grammajan thanks....and i'll rejoice when you are at this stage with you.

Hi Tif. I was dx 8/27/10, just 3 days before you. I just wanted to reply because I am scheduled for my exchange surgery on 2/28th and can't wait. I am at 420 cc's, I had a uni (left). I am so looking forward to it...although I've read a couple of posts from other sisters here who didn't find relief after the exchange I am praying I will be "relieved" after the surgery.

I'm not sure how far apart the fills normally are. I had one last Monday but it was only 25ccs because of the hole/seam coming apart thing. And I go back on Tuesday (they said a week but couldn't schedule me for Monday, so close enough) but I don't know if that's just because they didn't fill me much. But the seam is still open - like I could stick 3 peas in there. That's how wide it is. And it doesn't seem any better than it was last Monday. So I don't know if they're going to keep filling and it's going to get worse and worse or if he's going to have to suture it again, or what. It's still freaking me out though. That's the side that the lumpectomy was in and I don't know if that has anything to do with it or not. The other side healed just fine. And yes, mine get cold when I drink cold things. And the corners are still burning. Gotta get through it though.

oh joane, i am so happy for you. the exchange should be behind you now and i'm anxious to hear how it was. I am scheduled for the 28th with a left side mastopexy and mammoplasty so i'm a big eager to hear what to expect. I'm at 600 cc now with the expander and when i thought i was through he stuck 75 more in yesterday for wiggle room. i think there is a special place for plastic surgeons who love to inflict pain while building us again. lol one day i will look back on this time and think fondly of him....maybe