continued Tissue expander pain!!

I just had my bilateral mastectomy with expanders Dec 17th. I can't imagine walking around with this uncomfortable pain for another 4 months. First it was the drains and now the expanders. It feels like a blood pressure cuff around my chest. And what is with those port things? Is anyone else's ribs sore?

Please tell me that the permanent impants don't feel like this. I can't imagine being this uncomfortable for the rest of my life. Have we not suffered enough???????

Hi Ladies,

You are dealing with the hardest part right now, the expansion process is very tough. I thought I was going to lose my mind, my expanders were sucking out my life.  Yep, it will be tight, but when you have the exchange it is instantly released.  You will feel great -   All of a sudden you can breathe again and your ribs will be like they used to be.  Hang in there, it really does get better.  For now, ice on your boobs, advil, something to help you sleep, and lots of pillows stacked under your arms.  

And... you will be able to sleep on your stomach again only a couple of weeks after the exchange.

Good luck,

Lilyj 

I'm reading your posts and freaking out.  I've yet to read anything similar to my experience.  I had bilateral mastectomy.   Then I had a bleed so they had to go in again - all in the same day.  That means they cut my chest twice in a day.  My left breast is puckered and tight as can be.  Its sore and I know it is the expander.  My right breast has lots of skin.  I believe, as does the PS, the the expander migrated from behind the muscle.  It is almost the same size as my real breast except there is a large incision running across it.  So I am asymmetric and almost flat on one side and floppy on the other.

Also, upon inserting the expanders he inflated the left breast by 600 cc and the right by 500 cc.  Does that seem like a lot?  I will say I am overweight but still?

ouch.. mine had 250cc in each when I awoke from surgery and I heard that THAT was a lot.. so I did wake up with something under the blankets but there was still quite a bit of skin that took weeks to fill in with fills..  Finally I was up to 650cc and then there was the almost 3 month wait to put in 627cc implants..  I am about average (high average) weight but I have a wide chest, I'm approx. 5'6" tall.. My breasts were only small 36B's  now they are 36D's...   I hope everything turns out OK - Best

Bless your heart.  I'm sorry you are having so much pain.  I was filled with 100cc at the time of my mastectomies and temporary expanders (back in September) and that REALLY hurt for about two weeks.  I emphasize REALLY hurt.  Difficult to get out of bed without my husband pushing me up and my keeping my upper body like a "plank."  Any movement of the chest muscles was excruciating.  So, it's hard for me to imagine being filled with 240cc at the time of your mastectomy.  OUCH!  Of course I don't know your frame, or anything, that just sounds like alot.  my PS had me wait 3 weeks after surgery for my first fill, which the doctor started small - just 50cc's....so, for the first month, I still only had 150cc in my expander.  I wonder if your doctor has just progressed way too rapidly.  I took muscle relaxers and pain pills for the first  month....things finally began to settle down.

I would suggest holding off on any fills until you accomodate to your current situation.  A second opinion sure wouldn't hurt.  I don't think that's right for your PS to cut you off on your pain pills if you are still having pain.   I don't understand that rationale at all. 

I want to encourage you -- I had my switch to permanents on Dec. 4th.  I feel GREAT.  The expanders were a royal pain.  The switch to permanents was like night and day.

If you are NOT rejecting the tissue expanders, make sure you go SLOW and conservative with the fills.  I wouldn't have ANY until that pain gets under control.  Then after that, I'd just go very conservative....maybe try 50cc and see how you do.  There is no rush.  I pray for you to get relief soon. 

God bless you,

Sue

Sue

I had bilaternal mastectomy on 12/9 with expanders.  I've had two fills and each time I've been hit by a truck.  Pain meds don't even work. I'm on the couch again a few days and popping drugs every 4th hour.  Nights are the worst - can't get comfortable because the pain is everywhere.

I work as a full time HR Manager and have no idea how I'm going to get back to work if these fills are this bad.  I can't hardly cough and take a deep breath, let alone drive on double doseage pain meds!  How did you do this?  Are you back to work yet?

Take care, Mickie

Mikie,

I feel your pain and I am so sorry that someone else is experiencing the same pain. I can't imagine going back to work. My doctor feels I should be able to go back to work by Feb.

I don't plan on getting these expanders filled until I have some pain relief. The doctor said we can even try taking more fluid out of them, but that is upsetting to me. I feel that I am going backwards. She also mentioned that the expander and Allograft tissue could be close to a nerve. I just don't understand....It upsets me that the doctor keeps telling me that she has never had a patient that has had so much pain. I just find that hard to believe after reading all these sites.

Kmccraw423,

I hope the best for you. I hope you sister can get the doctor to listen.

The only thing that gets me through the day is that I am cancer free and pray that diagnosis never changes.

I agree with Tina.  Some PS might fear re: their patients getting "addicted" to pain med.  If you have a phsiologic pain problem, you will not get addicted.  As long as you are taking the meds within the prescribed range while you are having pain issues, when the pain goes away, your need for pain pills will go away, and you should not have an issue.  Your PS needs to help you manage your pain until you get your final exchange.  Then your need for pain pills will go away.

It is inhumane to not prescribe pain meds if you are suffering.  This PS needs some compassion vs. threatening to cut off your pain meds.

I did eventually find that the motrin/flexeril combination worked about as good as the Vicodin/flexeril... so you can expirement with that.

God bless you.

Yes, my PS was concerned about my developing an addiction to the pain meds, as for some this can become a serious issue.  

From my personal experience, taking narcotics consistently for several weeks (as prescribed) to control real pain can result in an increased tolerance/addiction to the meds, even if you're not aware of it.  This is why my PS and I discussed and he said I would need to ween off the meds.  It is no joke and why drs. take this seriously.  It took me about 10 days to slowly ween myself off the drugs.  There was what I would call an actual withdrawal -- crying, meltdowns, etc., but decreasing slowly minimized the symptoms.  

I was definitely in pain and used pain meds knowing that there was potential for developing a tolerance.  I doubt very much whether I could have made it through the process without them.  I was committed to eliminating the pain meds as soon as I no longer needed them.  

That being said, I think if you require pain meds to get relief during this process and you are fully aware of everything, you deserve to have them.  Just don't want to gloss over the downside.

I just found this thread and can certainly relate. I am 3 1/2 weeks out from my BM w/ TE and I do not like the TE's. I am fining it almost impossible to get comfortable at night. Lack of sleep has resulted in a nasty cold, which doesn't help matters. I am sleeping on five pillows and the PS did prescribe ambien for those nights when nothing else works. The good news is that I have my surgery date for the implants - April 9. From all that is written here, life should be good after the implants. Thanks everyone! - Jean

Yes, ladies.  It WILL get better.  I had to sleep on the couch for about 6 weeks after placement of the TE's because sleeping flat in the bed hurt so much, and I could prop myself up at a 45 degree angle on the arm of the couch, and then use pillows to support my arms.  The TE process is definitely an unpleasant and downright painful process.  Hang in there ladies.  I have to tell you that it's worth it.  I love my new permanent saline implants.  They look great.  I am pain free.  It literally is night and day.  I have pics posted on the picture forum under "saline implants - 5 weeks out; a couple questions"

Hang in there, you can do it.  You will feel great once you get to the permanents!

God bless you all,

Sue

I agree with Lorraine.  The 2nd to last fill was painful.  I went ahead and skipped a week to give myself a break.  That helped a lot.  I also cut down on the amount.  Just listen to your body.  Don't be afraid to be assertive with your PS and tell him the amount you feel you can tolerate.

You are the only one who knows how it feels in your body - the PS is just guessing....and don't let anyone second guess your experience.  What  you feel is real, and you do not have to "convince" your PS or anyone else that it is bad.  We all know how you feel.  We know the pain is real.  You are not alone.  Hang in there.  You WILL feel better when the expansion process is over!!!!

XO

Sue

Cutting back from 60cc to 45cc per fill made an enormous difference for me.  After the first 3 60cc fills, I felt like I was having a heart attack for about 24 hours despite muscle relaxers and pain meds.  When I finally had the nerve to tell  my PS and she slowed down, I didn't even need pain meds with the smaller fills.  There is no shame in  having fluid removed from your TE to make you comfortable.  This whole process is about letting your muscles stretch.  I doesn't have to be a race.  Take your time and go for the size you want.  This is temporary.  Your implants will be with you a long time.

Carol(AZ)

Or.. you can be like me and have no choice. If Rads are in 5 weeks.. I have to get fully expanded in 6-8 weeks. I have had 1 fill and am two weeks out of surgery. My second and larger fill is this Tuesday. I have not had pain yet... but I think Tuesday is 60-100cc... pray for me... ugggggg