continued Tissue expander pain!!

Mykidsmom, you're right, I had the BM back in May.  I wish I could of had the expanders put in at the same time but no luck.  My expanders are not that big apparantly.  I am striving for a C cup in the end.  I'm not sure right now how much they will be filled at each appointment but I expect it to be very little, I'm pretty tight already!

mom of  2, I will try the neck pillow.  I find getting up out of bed is the hardest also.  I have most of the pain/pressure near the top of my expanders and in the middle towards my sternum. Like you said, hopefully the pressure will get better as the fills progress. Good luck Thursday.

Thank you both for responding!!

This is my first forum and I'm so glad I found it. I am BRCA 1 + with no cancer. I had a BSO on 11/20/08 and my prophylactic mastectomy on 12/10/08 with immediate reconstruction, My PS injected 360cc at the time of surgery. He waited a month before my first fill and was able to inject 100cc. Last fill will be next week....then I guess another "overfill". I am in constant "pain". I am allergic/sensitive to many narcotics and the over the counters don't do much. Glass of wine with girly friends works wonders! I am just glad I'm not alone. It's been tough....Lots of tears. I'm a hospice nurse of 13 years so I've seen it all. I have my moments....but am so grateful that I am changing bras/binders 8 times a day for comfort and not wigs. A heating pad has been comfortable for the back pain....just be sure it has an automatic shut off!! My support and admiration goes out to all of us....women and men who prove we can survive...no matter what. Looking forward to my exchange surgery....nips are over rated....they are for looks only at this point!! I'm done after the exchange....I have beautiful patients and their families waiting for me to come back to work.

Jackie

I'm scheduled to go back sometime in Feb.....either the week of the 16th or the 23rd. Whenever it is,I will just be starting partime. My back hurts if I sit too long and I can't concentrate once the pain sets in later in the day. My employer has been fabulous. I used my FMLA. You're entitled to 12 weeks. I'll be managing the office at first,,,,,then I'll get back out to my patients, Trouble is....I'll probably be out again end of March for exchange surgery....for a couple of weeks anyway, My PS won;t let us drive if we're still on narcotics,,,,didn't know if you still were.....that would be a reason to stay out a little longer....it should be your choice anyway......not PS

I had expanders from October of 2007 until my exchange in June of 2008. Every fill hurt... and every fill required me to take a muscle relaxer and some kind of pain meds for at least three days. I went slowly with the fills and usually didn't get more than 60cc per fill on each side.

I remember some nights just sitting up holding a pillow and crying from the pain until I fell asleep. My final volume on each side was 770cc before my exchange.

I waited three months after the last fill until surgery when I got 700cc silicone implants.

I can sleep on my tummy or sides now, and I am in no pain. I can say that it was worth all the suffering through the fills because I have exactly the same size breasts as I did before my bilateral mastectomy, only they don't droop. I can even wear my old bras if I wanted to!

Anyway, get the least amount of saline per fill that you can tolerate and go less often. There is no race to get filled. It's all at your own pace.

Just think, I had 770cc on each size (expanded to 10% more than my final fill size) so that is like three typical water bottles I was carrying around on my chest! No wonder it hurt.

The good news is that it's a process and usually doesn't hurt after they muscles stretch and you have the exchange.

Hang in there.

Hugs!

Jani

If you are still here.....thank you thank you thank you.......I tried lying on my stomach like you described.....oh my god......it was the first time since my BM with TE that I can say I have had zero pain....I think I'll stay on my stomach till my exchange!!! I couldn't believe it was comfortable. Opened the tear gates I cried. Thank you...eternally grateful.

Thank you for the muscle spasm confirmation.  I am 3 weeks post op, right sided mastectomy with tissue expander.  The spasms are most irritating, but now that I know that they are a normal part of the tissue expansion, I can deal with it, I thought something was wrong.  The PS did tell me about the hardness and discomfort, but not the muscle spasms.  Thank goodness for you women that have walked this journey and offer encouragement to those that are at the beginning of the walk.  I am small breasted, B cup normally, they put in 200cc at the time of surgery.  The PS put in another 100cc on the 14th of January, and I am to go back on the 28th for what he thinks will be the last fill.  I don't want large breasts, just small C's.  I am debating weather to leave another week for the the next fill as I am having so many spasms, or just endure it and get it over with.  Any thoughts?  Jan1

I had my first fill on 1-14.  It was pretty uneventful.  I have a mentor tissue expander in place, filled with 200cc at the time of the mastectomy.  The fill process went like this for me.  I am in a wrap around gown, in a reclining chair.  The PS uses a magnetic locater to find the port area on the breast, which he marks with a purple pen.  He then filled a syringe with 100cc of sterile saline fluid that is attached to tubing with vents to aid in the filling of the tissue expander.  He did tell me that I would feel a little prick as he put the needle in,  I really would say since my breast has numbness I really didn't feel the needle much.  I did feel the fluid pressure as the fluid went in, not painful but pressure.  The process took about 5 minutes, he removed the needle and put a dot size band aid on the area.  It was no biggie at the time.  I was concerned about pain since I had fluid buildup from having the drain taken out the Friday before.  I had my drain in for 12 days, and was still draining 60cc per day, so that was another issue.  The feeling of pressure and muscle spasms are the biggest annoyance.  The worst time for me with the fill and my tissue expander is in lying down and trying to get comfortable.  If I didn't have my U shaped micro bead neck pillow,  I would be very cranky, it is the one device that helps me get comfortable.  My husband bought it for my a year ago at the airport as a gift,  I thought I don't want to lug this around when he bought it for me, but I didn't tell him that.   I had no idea what this gift would mean to me a year down the road.  Jan

Hi Linda,

I am doing pretty good, thank you. My nipples and areaolas, and eyelids are all healed up. My husband says that my face looks younger but I really don't notice a big differency until I go to put on eyeshadow and there isn't as much skin.

The areolas are still dark pinkish/purplish so we are waiting a few months for them to settle down and then I will get tattoos.

I'm satisfied with what I have for now so there are no plans for any further surgeries, so that makes me smile.

I hope your nipple/areola surgery will go well. It really does give a nice finishing touch.

Hugs!

I have a question, what were the symptoms of an infection?  I am having what seems to be the typical pressure and pain associated with the tissue expander.  It would be helpful to know what to look for as S/S of infection.  This was not something that the surgeon or the PS mentioned as something to monitor for.  Thanks.  Jan

Thanks Amy, when you are going through the process, there were a ton of forms to sign and I have put them in a notebook.  I looked back and there was written information about risks such as infection.  Your specific information was helpful and in more detail.  I bought a 3 ring binder and put dividers in it.  I keep all surgical records, mammogram, MRI reports under one tab,  Lab, pathology under another.  Dr information under another,  disability, insurance information under another tab.  I have often found that I have my own medical information that physicians don't have, so it is helpful to carry it to MD appointments expecially the ones you don't see very often that may not have all of the updates.  Jan

Lorraine,

I am sad to hear about your infection. Did it come from a fill?? I hope it is getting better it sounds like you are on some kick ass drugs, so hopefully it will be gone before you know it. We can both get our last fills, our exchange, and get past the recon process! When are you gonna do your exchange? My PS is saying end of March or early April. It sounds like a lifetime away but it really is just around the corner. Well feel better and know that this was just a minor bump in the road. Chin up kiddo cus this to shall pass!

Tracey

Wow, Thank you for the information.  I had a weird indentation on my "foob", great term by the way.  I will watch it closer now. I think it is because my old bra's don't fit the wider foob as well as with my natural breast.  I have another question, how far apart did your PS schedule your fills?  I had my fist one at 17 days post op, and am scheduled for the second and hopefully last fill next Wednesday.  He does the fills 2 weeks apart.  The pain from the first fill is just now settling down today, but the muscle spasms are still there.  Thanks for sharing, all of you are making this journey a lot easier for me.  BTW, I grew up in HB.  Jan

I suppose I should add.. PS tells me I could go as slow as I need. He has ladies that can only handle 50cc every two weeks and others like me. I think it just depends on our chest muscles.

New Becca,

Just wanted to say that you gave some very good tips!

Tracey

Sam, hang in their girl!! I think it is awful for ladies to have that much pain. I pray this fill will NOT cause you pain.. or anyone else going through this expansion process... !!!