continued Tissue expander pain!!

Angel10,

Thanks for this Exchange City thread!  It is awesome to know there are others who feel the same and can offer support!

NAE

Mantra,

I am not aware of the Ativan sublingual....many others have taken the other two in combination, though.  I trust you have some experience with all 3 at the same time?  We don't want them picking you up off the bathroom floor, but probably not the office floor either! 

Good luck...and God Bless!

Rock Climbing - holy cow!!!  I can't imagine doing that.  I got someone to help me today with my luggage on the airplane.  I did my best damsel in distress act!  I took it out of the overhead compartment.  Probably not a good idea.  I'll get someone to help me on the way home!!! 

I just realized that my breasts will never change size (like when you have your period or gain/lose weight).  I don't know what made me think of this, but I better make sure I'm happy with my fill size.  I really like where I'm at, but will do one more fill, just in case! 

I want 2 foobs the same size too.  I have pectus excavatum, so my chest is sunken in.  One side is sunken more than the other.  When I had implants, the right side projected out about 1/2 inch or more than the left.  Now that I have expanders, it's not as much - ???  My hubby thinks my original PS might have done something wrong.  I really like my new PS.  I seem to trust him more and hope I have good results!!! 

Hi friends. I've been on and off the breastcancer.org boards for a while. I was originally diagnosed with cancer (both in the duct and invasive) in Oct. 2005 and went through a lumpectomy, chemo, radiation and 52 weeks of IV Herceptin. Just last month I was diagnosed with an in-breast recurrence of DCIS and atypical cells in the right breast.  I had a bilateral mastectomy on 11/24 with tissue expander reconstruction.  I'm finding it gets a little bit better every day.  The expanders are the worst part. I feel like I'm constantly aware of them and my foobs-in-the-making are hard an lumpy. Yucky, but I know it'll get better.  My PS filled each expander with 500 cc of saline during the original surgery. He's aggressive about big fills while a patient is under anesthesia and will be recovering with heavy meds. I'm finding that Valium is my friend. I was on a morphine pump while in the hospital and was then switched to Percocet and Valium.  The Perc doesn't seem to do the job on the kind of pain I'm having. My surgeons tell me that I'm feeling the muscle stretching and that with Valium being a muscle relaxant, it's the med that will do the trick.  It does help.  I've tried to cut down on the amount I'm taking (Rx is 5mg every 6 hours) so I'm less foggy during the day.  I'd take a pill first thing in the AM and try to go until bedtime without another.  My doctor said I'm trying to be a hero and to just take it.  I'm also at the point where I can take ibuprofen, so I'm hoping that will ease the discomfort.  Right now, I can't really call it pain - it's best described as serious discomfort. Sleeping has been tough.  I can only sleep on my back and whether I tried to lay on a low wedge of pillows with a pillow under my knees, or practically sitting up against a backrest and pillows, I've woken up in misery with stiffness and back pain.  The last 2 nights, I've slept in the corner of my L-shaped sofa and I've been much more comfortable.  I'm pretty much sitting up and I also pull my knees up, too.  I wake up only with chest soreness.  That's what I think I should expect rather than back pain, so that's a step in the right direction.  Today, my breast surgeon suggested a long body pillow to try to rest against while laying on my side.  I'm a little nervous, but I'll make the attempt.  I've also been put on a second round of antibiotics because of some pinkness on the skin of my previously radiated breast. From what the dr. told me, the radiated tissue has a higher risk of infection and what she called "implant failure."  Scary!  Any of you have any experience with infection with expanders?

 Wishing the best for all of you! - Kelley

Hi Angel-

Thanks for your reply. I'm no longer trying to go without the valium for too long.  It really helps and I've realized I just need to take it.  I had a visit with my medical oncologist today and although she gave me the great news that I'm now strictly a surgical patient and have no need of any further treatment from her, she did think my pinkness was spreading.  (My guy and I both thought it looked better!)  She called an infectious disease specialist to get a recommendation for a new antibiotic (had been on Keflex) and she ended up giving me Dicloxacillin. I'm keeping my fingers crossed that this will fix me and I won't end up on IV antibiotics or with the need to take out the expander.  I don't have a temp and the foob doesn't feel hot, so I'm hope hope hoping I'll be okay. Beyond that, I'm feeling good and just want to keep moving forward! Did the IV antibiotics fix you? You didn't need to remove your expander, did you?  Hope not!  Again, thanks for your reply.  All my best to you!

 Kelley

No Kelley,

The 6 days on IV antibiotics did the trick and was expander was saved!  I went on Vancomycin which is a broad spectrum antibiotic.  My PS was considering doing a "wash": removing the TE, cleaning out the infection and putting a new one in immediately, a process that he has been successful with in the past with other patients, but thankfully we did not need to try that.

I went home on Bactrim for several weeks after that, but then developed a reaction to that antibiotic and ended up back in the hospital again...but the TE was not harmed!

Be vigilant....one thing many of us learn through this is that we really do know our bodies and need to go with our gut feelings on this things.

Best of Luck and God Bless!

Have you considered having less of a fill each time?  I had such excruciating pain 3 hours (to the minute it seemed) after each fill which lasted at least a day and half, just got to feeling okay again and then needed my next fill.  My plastic surgeon suggested I get half the fill each time and that helped a great deal, didn't get rid of the problem but it did help.  Now, 2 years later after having the implants, thankfully no pain, but I do remember vividly the discomfort. 

Thanks Nedeza!!! 

Kristinka ~

I went on disability for 5 weeks after my MX.   Did you not start your disbility at time of surgery???  My PS sent the forms in during my pre-op prior to MX surgery.  This is Calif. State disability...maybe it is different where you are??  Your doctor should have started the process upon your request.  I hope you are able to receive it.  Check with your doctor's office.  I have Kaiser Permanente & they automatically process the paperwork.

Kittycat ~

How are you doing???  God bless you!

NAE

Ladies, I am glad I found the tissue expander site. I joined the Stage 1 girls who are terrific and wonderful sisters, but I am going through hell with the tissue expanders. At night is the toughest, hard to sleep, very uncomfortable.

I had a masectomy (right breast) Oct. 30, my first fill was 11-24, and I could not move for a day and a half. I had saved some of my painkillers from surgery. I had an appointment for Dec. 15 - but PS would not do the 2nd procedure because of a scab and redness around incision mark.

Please forgive me, am I the only one losing my mind with this thing in me.I am 60 years old, had always been very active athletically and my whole life has changed. I did not need chemo or radiation but this te is making me crazy, PS won't promise me any length of time from start to finish with this procedure.

  If you can get the disability from the State of California or this, get it.;.

In the great state of NJ I was denied after I applied. I lost my job in July 08 and their rules are very sticky.re: state disability because of earnings re: federal stimular (extensions). I guess on unemployment I did not earn enough after working 40 years. . There ought to be a law for Breast Cancer Patients who have to be careful with these tissue expanders or for that matter any breast cancer survivor. Everyone I spoke to re: disability was sympathetic but the rules are rules. I was lucky enough to get a handicapped sticker from the town which has helped me with my local errands.

Ladies, it has been a pleasure to meet you.

Ronna,

so sorry you are having so much difficulty with the TE. I thought the whole process was horrid....but you do get through it. But I took sleping pills, pain pills and valium as a muscle relaxant during the expansion process....could not have done it without them...and I never took ANY of that stuff before hand and I stopped as soon as I exchanged!  Please ask for meds if you are suffering this much....as I have said before and will continue to say...if these drugs weren't developed for us in this condition then for when??

 I hope that redness goes away...I had an infection at one time and had to be re-admitted to the hospital for a week, so do call the PS if it gets worse.

Take care and God Bless!

Ronna,

You are not crazy...this is a very complex, problematic, painful ( yet can be exhilerating) time in our lives. Exhilerating you ask?  YES!  We finally begin to understand the priorities of life...it can be exhilerating and freeing!  My only wish is that there would be another way to understand these issues....HA!! but here we are!!  These times stink...but are valuable...believe me!

I had my bmx with TE's placed in April, was exchanged in August. My PS felt it was important to fill within 10 weeks due to the elasticity of the breast tissue being better immediately after surgery.  I felt going through it all that it would have been better to slow the process down, but I left it up to the expert.  I was in alot of pain, but "sucked it up" knowing that I was a neophyte and ultimately wanted a good outcome.  Not sure if slowing it down would have given me more relief, because at the same time...I wanted it over and done with. I think knowing what I know now...I would have slowed it up...but I put my faith in the PS....he is a good man, a good doctor  ...and he let me know he did not want me to suffer!! He was fine with helping me with meds.

ASK FOR MEDS! INSIST UPON MEDS! Ask your PS.."I am suffering here?  Why?  Can you give me relief?" You better like the answer....otherwise get someone else to help you or get meds from your primary doc!

Also, and this is important, I found tremendous support and knowledge on the "Exchange City" thread under "Breast Reconstruction".  I think if you read through that thread you will better understand that you are not alone and there are many women who understand  what you are going through and can support you!  Check it out!

I pray for your relief, your patience and your PS's compassion and expertise.

God bless!

Thanks everyone for the well wishes!  I am doing great.  No complications - knock on wood!  I've been resting this week and will go back to work next week.  It's actually been nice to take a break from work.  I drove for the 1st time today since surgery on Tuesday.  I did well, but I realized the little things is what hurts, like fastening my seat belt.  And now that it's colder out, my muscles constrict and it bothers me (no more breast tissue or fat to insulate my foobs). 

To all where there is "SNOW" I pray things lighten up for you!!!!  I cannot say much being in CA.  I only  SEE snow on my local mountains.  Will be looking for you Ronqt1 at the EC!!!

NAE