post expansion placement problems/discomfort

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Jennifer1961
Jennifer1961 Member Posts: 137
edited March 2014 in Breast Cancer #1
Hi. Had bi-lateral mastectomy on Nov. 10th. Had trouble sleeping, but usually slept about 4 hours at a time more or less. Then on Nov. 21st a blood vessel burst in my right breast, trip to er, then emergency surgery. They think this may have been caused by removal of tubes which was two days prior. During surgery they expanded right side more, to keep the pressure on the blood vessels. On Nov 26 had another expansion on both sides. Since then have been sleeping worse and worse. Percocet actually seems to be making me a little hyper. I'm seriously uncomfortable, feel like I have a very thick, hard elastic around my breasts and attached to my shoulder (especially the right side). Is this how it's going to be for the whole time I have the expanders in? I'm starting to get depressed. I've been going through the whole bc thing since May, first lumpectomy, then 6 rounds TAC, now this crap. Going to a shrink on Thursday so see if she can help with this, Any advice? I'm thinking of backing off on the expansions, maybe doing them every two weeks. Also, at what point did exercising start? I keep asking about it, but get nothing specific. Just told I can try to move my shoulders a little but still keep my arms down. Any advice is appreciated.

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  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #2
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    Oh Jennifer,
    So sorry for
    Oh Jennifer,
    So sorry for all that you're going through. I didn't have reconstruction so I can't help you in that area.
    I can say a prayer for you and let you know that you are never alone.
    Hugs,
    Wanda
  • Jennifer1961
    Jennifer1961 Member Posts: 137
    #3
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    Lighthouse_7 said:

    Oh Jennifer,
    So sorry for
    Oh Jennifer,
    So sorry for all that you're going through. I didn't have reconstruction so I can't help you in that area.
    I can say a prayer for you and let you know that you are never alone.
    Hugs,
    Wanda

    Thanks so much. It really
    Thanks so much. It really helps a lot. Sometimes I need to be reminded of my sisters out there.
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #4
    Options
    hang in there!
    Dear Jennifer,

    Please know that the expansion process IS NOT A RACE! I had my fills every two weeks and that's all I could handle. I took a break near the end for four weeks because they became so painful.

    Go as slow as you need to. If you need to back off on the amount of the fills, do that too. My largest fills were 60cc's, smallest was 20cc's. You're only about 3 weeks out from your surgery. Everything is going to feel tight right after. Did your doc give you some muscle relaxers? Flexeril really helped me with the feeling of tightness. It helped me more than the Percocet did and it helped me sleep. Some docs prescribe valium for the same reason ... to relax the muscles.

    I would totally back off from the expansions. Ask your doc too if he/she would refer you to a PT. They can really help loosen things up.

    m-star posted a thread about post-masectomy exercises ... I'll try to find it and bump it up for you. Also, the Livestrong website has some suggestions on post-masectomy exercises.

    Hang in there!
    http://www.livestrong.com/article/28314-post-mastectomy-exercises/
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #5
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    Hi Jennifer - I can tell you
    Hi Jennifer - I can tell you ALOT about those expanders. I just had my exchange surgery 2 weeks ago. I had a bi-lateral mastectomy in July & had expanders place at the same time & at that time my plastic surgeon did a 150cc fill. Every 2 weeks after that, I was getting 100cc fills. The fill that brought me up to 600ccs was so painful the next day that I could not stop crying. I called my plastic surgeon & he gave me a prescription for vicodin, and also told me to stop using the heating pad that I had been using & switch to ice packs, and to also take ibuprofen along with the vicodin. The ice packs & ibuprofen gave me immediate relief. After that, we moved my fills down to 50ccs every 2 weeks, which really made a difference - when we lowered the amount of my fills I didn't have any more bad pain from them. Unfortunately - the expanders themselves are so hard & just pretty uncomfortable the whole time. Hard to sleep.
    I never had any loss of range of motion in my arms - i was only told after both surgeries (mastectomy and implant exchange) to not lift anything over 5 lbs for about 10 days. I have the ok to exercise & do whatever physical activity i want now - but i just ended chemo 5 weeks ago & i STILL have zero energy to do any activity with!
    I would see if either slowing down on your expansions, or cutting back the amount they are putting in & that should give you some relief.
    *hugs*
    Heather
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #6
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    Lighthouse_7 said:

    Oh Jennifer,
    So sorry for
    Oh Jennifer,
    So sorry for all that you're going through. I didn't have reconstruction so I can't help you in that area.
    I can say a prayer for you and let you know that you are never alone.
    Hugs,
    Wanda

    I had a lumpectomy Jennifer,
    I had a lumpectomy Jennifer, so, I can't give you any information on how you are feeling.

    Just want to say that I am sending you prayers and hugs today!
  • PinkPearl
    PinkPearl Member Posts: 280
    #7
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    I know what you mean!
    On Nov. 9th I had a double mastectomy also with expanders placed on both sides. It has been slower going than I expected. I thought I would be up and going strong by now and I am not. I was having those muscle spasms you were describing so much so that they were wakeing me up at night but at first I didn't know what I was feeling. Anyway after a very restless, uncomforatable weekend and wondering if I had made a mistake with getting the expanders, I called my plastic surgeon's office and the nurse told me to take Ibuprofen and called in Flexidil for nights-well that is when I decided to take it. I had my first decent night of sleep last night since the surgery!!! That has made me feel so much better! I wanted to get off of the Hydrocodone for the time being if I could so I stopped that and I think the Ibuprofen and Flexidil at night is really going to help. Be sure to use Ibuprofen and not someother otc because it is good for smooth muscle injuries. I still have in two drains (had 4 originally) so that is not very comfortable either but better to have them than to have fluid butld up.
    Hope my experience helps a little!
  • SamuraiMom
    SamuraiMom Member Posts: 295
    #8
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    Been there...doing that...
    Hi Jennifer1961,

    My double was on 9-9-09 and I am currently going through the nipple reconstruction process.

    I still have tightness to this day. I think it takes a very, very long time for those pectoral muscles to adjust.

    Be patient.

    If you want to compare notes you can visit my website at mymastectomyonline.com.

    xxoo,
    SamuraiMom
  • Kylez
    Kylez Member Posts: 3,761 Member
    #9
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    Dawne.Hope said:

    hang in there!
    Dear Jennifer,

    Please know that the expansion process IS NOT A RACE! I had my fills every two weeks and that's all I could handle. I took a break near the end for four weeks because they became so painful.

    Go as slow as you need to. If you need to back off on the amount of the fills, do that too. My largest fills were 60cc's, smallest was 20cc's. You're only about 3 weeks out from your surgery. Everything is going to feel tight right after. Did your doc give you some muscle relaxers? Flexeril really helped me with the feeling of tightness. It helped me more than the Percocet did and it helped me sleep. Some docs prescribe valium for the same reason ... to relax the muscles.

    I would totally back off from the expansions. Ask your doc too if he/she would refer you to a PT. They can really help loosen things up.

    m-star posted a thread about post-masectomy exercises ... I'll try to find it and bump it up for you. Also, the Livestrong website has some suggestions on post-masectomy exercises.

    Hang in there!
    http://www.livestrong.com/article/28314-post-mastectomy-exercises/

    Yes, we are here for you
    Yes, we are here for you Jennifer!


    Hugs, Kylez
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #10
    Options
    SamuraiMom said:

    Been there...doing that...
    Hi Jennifer1961,

    My double was on 9-9-09 and I am currently going through the nipple reconstruction process.

    I still have tightness to this day. I think it takes a very, very long time for those pectoral muscles to adjust.

    Be patient.

    If you want to compare notes you can visit my website at mymastectomyonline.com.

    xxoo,
    SamuraiMom

    I love your site Jo Jo!
    I love your site Jo Jo! Very nice and very helpful!
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #11
    Options
    SamuraiMom said:

    Been there...doing that...
    Hi Jennifer1961,

    My double was on 9-9-09 and I am currently going through the nipple reconstruction process.

    I still have tightness to this day. I think it takes a very, very long time for those pectoral muscles to adjust.

    Be patient.

    If you want to compare notes you can visit my website at mymastectomyonline.com.

    xxoo,
    SamuraiMom

    thanks, samurai!
    I'm with DianeBC ... I'm pretty nervous about my upcoming nips and checking out your website answered some of my questions. We're about the same age too! I know lefty had some problems and you're going to have another go at it ... good luck. Thanks again for sharing your story. It has helped me and answered some of my questions. Thank you!

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