Expander Pain

I am currently 21 days post BMX for left breast DCIS. Pain from tissue expanders is very real. My PS didn't do any fill at surgery. At 2 weeks post op I got my first fill; scheduled for the second one next week. My PS has a strange sense of humor very similar to my husbands so even though I don't think he's funny at least I understand it. So when I sat there ready for my first fill I asked my PS if this would cause me more pain...he said "from here on out everything I do to you will cause pain and/or bleeding". I thought it was another bad joke but the tight stretching sensation after the fill was painful. Mostly my pain is from muscle spasms. Luckily my regular doctor already had me on muscle relaxers for neck and back pain/spasms. The muscle relaxers combined with Tylenol 4 keeps me sane. The best info I can give you is what my PS told me before my surgery....over the next 4-6 months you will be on a roller coaster ride; after surgery and then after each fill you are at the bottom trying to look up. Just when your body has adjusted and you feel like you can handle the "discomfort" (i hate that word cause it minimizes the very real pain we feel).....you are then at the top of the roller coaster just cruising along. Next thing you know you get another fill and you have just plunged back to the bottom of the roller coaster feeling tightness and pain....trying to look up anticipating the time when pain is not what your life revolves around. This roller coaster analogy has proven true for me and I am trying to learn to just accept the situation and take each day as it comes. There are other factors that add to the pain -- like the somewhat rigid back of the TE and it poking sensitive areas, trying to get comfy sleeping on your side which can be a major production but CAN be done, along with the ever present feeling of some foreign object just under the skin driving you nuts. So my advice to you is first understand like it or not you are on a roller coaster ride and can't get off until it's over (TEs removed and replaced with implants) Second look over these boards and take every bit of advice about all the small things you can do or get that provide even a small amount of comfort. For me my best purchase was really soft undershirts/camis that feel good against my skin and the big puffy body pillow I bought with a soft furry cover that helps me side sleep. Focus on all the little things you can do and trust me they add up and some level of comfort can be achieved.

Hang in there! This is a marathon not a sprint and sometimes we just need to take one day at a time. Sending you cyber hugs....just another small comfort.

gardengypsy

I'm Going down v the same road you are. These boards and all the women on them have been a godsend to me. There is so much information here based on personal experience it boggles the mind. I know this place has saved my sanity over and over. Any time day or night there is someone somewhere right here waiting to listen and maybe send some comfort. There are so many other things I'm doing to deal with the pain of the TEs that there just wasn't room for, so if there is something specific you want to know just ask. I'd be happy to share any time you like. Good luck with OR....so far I'm not going that route because I do light stretches at home which appear to be working so far. My PS is extremely conservative about what I van and can't do.

Anyway good luck. It is nice to know we all have a place to come when we need to.

gardengypsy

Another thing we have in common is the time frame. I was diagnosed November 17 and had my double mastectomy on December 18. One month of tons of research and I'm really good at research since I'm retired from doing medical transcription for a local hospital. It still all moved so fast. I was often accused of researching too much but there were still things I was completely unprepared for. Some of this stuff I don't think a person can ever be truly prepared for. My first week home was pure hell....pain, no sleep and multiple panic attacks...my husband is a saint for handling all that without breaking even once. I ended up nauseated, vomiting and had diarrhea for a few days and I only had one working arm! That was a humiliating nightmare......my poor husband.

But my point is I made it through all that. Everyone told me each day I'd feel a little bit better and they were right. Sometimes I'd just sit here and cry repeating to myself "it will be better tomorrow" over and over. It really does get better....either that or we get stronger and just find our own way to get through it.

Again, good luck and God bless you!

gardengypsy.

Today I felt great! I have been texting, posting on Facebook and here on these boards because I figure if I'm going to complain here I should also show gratitude here. Everyone was so right....every day is better than the last. If I keep improving like I have been my greatest challenge will be to follow doctors orders and do nothing!

As for husbands....you are right about being lucky. I can't imagine going through all this without him. We celebrated our 35th anniversary 5 days before my surgery. He has been my rock. I remember thinking before surgery that I might not want him to see my scars after surgery...actually I called them Frankenboobs. Afterwards I didn't even think twice about it and now feel silly remembering how I thought I would feel. We really can't predict our feelings. In fact he took care of my drains exclusively....I never once did the stripping or emptying of those stupid drains. He removed my Marcaine pain pump too....can't imagine having to do that by myself. He takes notes at doctor appts and reminds me of questions I wanted to ask. I am only 54 but we joke that with all our forgetfulness between the two of us we have one whole brain.

I'm so glad you have that same kind of support. Sometimes I just want to put in writing how grateful I am for my husbands support, but if I'm talking to someone who is alone in this battle I feel guilty or just weird....like I'm hitting a sore spot on someone. It is so nice being able to talk to you. We seem to have a lot in common, besides joining the BC club we didn't want to join.

Well it is almost 220 am and I'm finally getting sleepy. So time for bed. I'm sure well be talking soon.

Just an update here. Not feeling quite as good as I was with my last post. Had a fill of only 50 ccs on Wednesday last week and the tightness, spasms, pain and weird feelings of the fluid moving around inside the TEs brought me back several steps. I guess this is another valley on the rollercoaster ride that is reconstruction. My PS told me it would be like this but I was feeling so good I couldn't imagine or didn't want to believe that I would get pushed back like this. The stretches that had become so easy were once again difficult. The things I could automatically reach for became too far away again.

I've read other's stories where women got 100 cc fills and felt like they were starting all over in their recovery, but with only 50 cc I thought I'd be okay. I think the reason these fills hit me so hard is because of my pre-existing chronic neck and back spasms and pain. Either that or I'm a whimp and can't take as much pain as I originally thought. Either way I now see into my future, or at least the next several months.......and I don't like what I see.

I am still very unsure if choosing reconstruction was the right choice for me. Really wishing I had at least done a delayed reconstruction. Too late now, but if the need for revision ever comes up I will definitely be exploring ALL my options including over the muscle implant or no reconstruction at all.

Hope everyone else is doing well.

To answer the question regarding surgery during chemo - you can't due to depressed white count and possibility of infection with a compromised immune system.  Some plastic surgeons will fill during chemo - but only if your white count is stable.  Others will wait until chemo is finished to begin fills, and most will wait at least 6 weeks past the final chemo to do exchange - if your blood counts will allow.  Also, many plastic surgeons want to leave fully filled expanders in place for 2-3 months prior to exchange. If you require radiation all of this can also change.

Regarding 50cc fills versus 100cc fills - remember that this is a relative number.  In other words, a 50cc fill for someone with a smaller expander - say 400cc max volume or smaller and smaller frame, would be equivalent to a 100cc fill for someone with a larger frame and a 800cc max fill volume expander.  The fill spreads out inside the expander so a larger expander has more room.  Make sense?  That said, everyone is different - some have tighter pectoral muscles, some have higher pain tolerance, etc.  This is an individual experience so don't compare yourself to others - some need pain meds for longer and some don't, some can tolerate larger fills - this is never a contest, so don't worry!

I had my second fill yesterday and it was miserable. I couldn't figure out why exactly because my first fill (I had none in surgery) was 100 cc each side and the second was the same so it's not like they were huge. Yes, I understand that more volume will stretch the skin more but I didn't get how some women had much more volume, even if they weren't going for a larger cup size. I'm shooting for my original big B/small C. I only have one more fill to go, 50 cc each. But this thread made me understand what my PS has been telling me--my expanders are small because I'm thin with a narrow chest. At my first consult he explained all about how mine would be about as small as they have because duh, it's a horizontal measurement.

Anyway, I start chemo this week and will be done in 2 1/2 months (4 rounds) and after that can exchange, yay! I hate these &$!;#%** things--hard, weird, uncomfortable. I know I should be happy for the technology but still. Ow.

I hope someone out there has answers to this pain management question. The expander has been painful since day one. I had a first fill 2 days ago.. It hurt a lot about 48 hrs after the fill, but seems to have calmed today. Hope it lasts. I am looking for solutions to pain. My PS won't give me meds. He says, "You shouldn't be having this much pain. Maybe you're one of the people who really can't handle the expander and we should remove it and leave it at that". An excellent surgeon by reputation, but obviously a jerk.

Anyone out there getting any relief that doesn't involve kidney/liver destroying ibuprofen/acetaminophen

Little shoe

Hey guys. Just joining this thread and I don't see anything similar to my issue. I had a double masectomy 10/20/15. Recovered fine and started chemo on 12/1. This week, it looks like my implant is infected. Very red, fever, sore on one side. DR gave me oral antibiotics on Tuesday. Wednesday, they gave me IV antibiotics just to make sure. Today - still not feeling great. Going to see DR again tomorrow. She said that they might admit me to the hospital for more antibiotics if it is not cleared up in the morning. Ug! I thought I was past all of this 3 months later. Hang in there! It does get better! Hugs!