continued Tissue expander pain!!

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  • pastapesto
    pastapesto Member Posts: 42
    edited January 2010

    Nedeza - Thanks, it's good to hear that the TE might soften.  Mine feel like a stiff plastic corset under my skin, and ride up when I raise my arms.  I wish I had understood how uncomfortable this immediate reconstruciton would be, but also, I was afraid I'd never have insurance this good again.

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  • Nedeza
    Nedeza Member Posts: 666
    edited January 2010

    Pastapresto ~

    I'm glad my comment comforted you!  I know those TE's are dreadful but luckily they are only temporary!  They do soften just a bit over time...not completely...but less stress on the skin/muscle. 

    NAE

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  • Angel10
    Angel10 Member Posts: 682
    edited January 2010

    You know ladies....not everyone suffers as you and I have.  I have 1 sister who barely complained, another who complained miserably....

    I often said to myself, "I wish I knew beforehand!"  But really....pain is such an individual thing in terms of how it feels, where we feel it, how sensitive we are to it.....who could have told us exactly how we would feel?  No one could.

    The beauty of the site was that I began to realize I was not crazy....that this horrible pain was normal for so many others...even if I had felt ill prepared.  Truth be told...if I ever did realize....like if I had the pain for a one night trial period in preparation for what was to come....I might not have gone through with it!  But it is 5 months post exchange....and even though I am not totally comfortable with my foobs today...it is getting better, and I am glad I did it.

    So just know that you are not crazy, this is some of the toughest times SOME of us will ever physically and mentally experience...yet as so many before you got through this....so will you!

    God Bless!

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  • Kristinka
    Kristinka Member Posts: 520
    edited January 2010

    Thanks, Angel, for your sweet post.  I can't tell you how much it helps me to hear that ladies like you and NAE are feeling better all of the time after the exchange.  Yes, this site helped me to realize that I wasn't crazy, that the pain was real despite the fact no one had mentioned pain before my mx...

    For you shorter ladies suffering with the TEs, I am 5'7" and I am not having an easy ride with my TEs.  I was thinking that being thin makes the pain worse, but perhaps each of us has our own pain threshold, with mine being oh so low.

    I've got my exchange date - 2/26 - so I'm trying to figure out how to keep my sanity until then!!! I just want to be put out for 5 weeks and wake up with the new foobs...Time for a hot shower and my daily stretches.

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  • Nedeza
    Nedeza Member Posts: 666
    edited January 2010

    Kristen ~

    Just knowing that you have an exchange date brings some peace of mind..I know it did for me. 

    Angel10~

    You said it beautifully!!!  I remember when I asked if it was going to get better & you chimed in & said YES...there would be a light at this end of the tunnel!!!

    I am feeling human again...my MX side does not feel so foreign any more.  I even think it is settling (dropping) into a natural position.  I feel like I am in limbo now...hard to explain...all good!  These last 6 mos. have been overwhelming...constantly going, going, going!  Now...very much slowing down & I almost feel like saying "now what"?

    Have a good weekend!

    NAE

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  • Jenmont
    Jenmont Member Posts: 2
    edited January 2010

    Hello ladies -

    After a double mastecomy, my expanders were put in on November 12th  They too are placed high and out to the sides, but my PS said the final implants would be placed "normal" and not to worry.  I have received four injections to date and with each injection I am experiencing more pain.  After the last "fill" I began experiencing what I can only describe as muscle spasms in my back and chest.  It is so painful that I am very limited in my movement and cannot even take a deep breath.  Prescription pain meds take the edge off, but I am in constant pain.  My PS said it was normal to feel discomfort but this is more painful than the mastectomy itself was.  I have two injections left and then about a month of healing before the implants and I am just dreading the next few months. Has anyone else experienced this?  

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  • Kristinka
    Kristinka Member Posts: 520
    edited January 2010

    Jen,

    yes, I had horrible spasms after the 1st two fills.  you can take a muscle relaxant like Flexeril.  It worked well for me, but eventually it gave me dry mouth, so I stopped taking it.  Valium is another great muscle relaxant.  Ask your doctor for a prescription because pain medication does not deal with the spasms.   Don't wait for an appt, just call and get a prescription!  Best wishes,

    Kristen

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  • Nedeza
    Nedeza Member Posts: 666
    edited January 2010

    Jen ~

    Yes...the pain is awful but as your skin stretches & your muscle begins to relax...it does get better.  After every fill it feels like someone is pushing against your chest w/ every breath...sound familiar?  The discomfort would radiate to the back of my shoulder blades.  What you are feeling is all normal...a normal process which comes with this process.  Taking pain meds & Valium for muscle spasms lessons these symptoms.  Just remember...this is only temporary...once you have your exchange it will be all better!!!  You will enjoy having soft foobs agains!

    Hugs,

    NAE

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  • binga
    binga Member Posts: 140
    edited January 2010

    I am having bilateral mastectomy with TE on the 27th and am wondering if you ladies who are having so much pain with the fills are working?  I hear some people talk about how they went back to work after 3 or 4 weeks and am wondering is this really a good idea or should I plan on being out until after the exchange with the PS said would be around 3 mths?  My job requires that I be on my feet for 12 hour shifts and although not a lot of lifting I do alot of moving motions with my arms.

    Thanks for any insight.

    Becky 

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  • Nedeza
    Nedeza Member Posts: 666
    edited January 2010

    Becky ~

    Everyone is different.  I went back to work after 9 wks. post MX.  I continued with expansions for the rest of the weeks leading up to the exchange with no problem.  My MX was on my right side & am right handed.  I sit to do my work..I am a dental hygienist...so I have to utilize my right side a lot to do what I need to do.  I have to say I only work 2 days a wk. & only 8 hrs. per day so I may not be the best person to give advice.....As I said...everyone is different.

    NAE

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  • Jenmont
    Jenmont Member Posts: 2
    edited January 2010

    Thanks for the advice.  I will definitely be asking my doctor to prescibe something for the spasms.  I consider myself a strong woman, but this is really wearing me down.  The lack of decent sleep coupled with the inability to do the things I did with ease just a few months ago is really starting to take it's toll.  Although I am not happy to know that anyone else is going through this, it's comforting to know that others understand what I am feeling.  I spent the last four months focused on making everyone in my life feel better and now that things have slowed down a bit, I find the reality of the situation really setting in.  I am so glad I found this site and the support I am so grateful for.

    Thank you!

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  • pastapesto
    pastapesto Member Posts: 42
    edited January 2010

    What kind of bra are you using?  I'm not wearing any yet, with the TE's, after 6 weeks and 1 fill.  I feel like I need something stiff to push 'em toward the center, they are drifting out to the sides...  Kit

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  • kclark
    kclark Member Posts: 12
    edited January 2010

    I had my right MX last March along with 18 nodes removed 3 positive.  I got a nasty infection one week later and had the site opened and packed.  Left MX and recon on both sides.  Am now completely filled up 500cc's and my right side looks very different than my left.  PS says it is because of the scar tissue.  Hopefully some of the differences can be remedied when I get the implants.  I have all the pain and tightness that so may of you describe on the right.  Almost none on the left.  Started jogging again yesterday and running with the TE's was a strange experience.  Hopefully will  be better with the implants.

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  • kclark
    kclark Member Posts: 12
    edited January 2010

    The cold weather has definitely had an impact on my TE's.  I live near Chicago and we had a record cold spell.  I was ready to pack it up and move to AZ!  Temp today was a balmy 38 and my chest wasn't nearly as tight.  Is this like the old football injury that aches when the weather changes? So crazy.

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  • pastapesto
    pastapesto Member Posts: 42
    edited January 2010
    Kclark:  my colleague told me that with TE, she frequently feels "cold on the inside".  Don't know if that changes after the exchange, good to ask the PS.    Sometimes I have pain "inside" the TE, I suppose it's phanton..  Be well, Kit
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  • Kristinka
    Kristinka Member Posts: 520
    edited January 2010

    Binga, I agree with NAE - everyone's experience with the mastectomy, tissue expansion process and exchange is unique.  Due to the pain I had with the expansion process, I decided to go on medical disability until after the exchange.  I teach and with the pain and lack of sleep, I knew I'd have a difficult time.  Driving has even been a challenge and I think I am ten weeks out from the mastectomy.  Sleeping is hard for a lot of TE ladies, so 12 hour shifts might be quite difficult for you.  Best wishes to you,

    Kristen

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  • pastapesto
    pastapesto Member Posts: 42
    edited January 2010

    Kristinka:

    I didn't realize that TE was impacting my sleep..  so many other things are too.  Trying to get used to my new CPAP machine is probably the most disruptive.. it's supposed to be good in the longer term, but it isn't solving my problems yet...

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  • Angel10
    Angel10 Member Posts: 682
    edited January 2010

    Regarding bras...I wore the surgical vest throughout a lot of my process, or sport bras that zip up the front.  Pulled me toward the center....

    I was laid off just prior to my dx...and just went back to work this month, 2 months after my exchange. I would have had a hard time concentrating and working through the fill process....but many other women work all through it.  My hat's off to them!

    And be forewarned.....after the exchange...the foobs hold the cold longer than boobs!  Pretty weird!  Ha!

    God Bless!

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  • binga
    binga Member Posts: 140
    edited January 2010

    Kristinka and Nae

    Thanks for the info.  I am just glad to hear some people aren't superwoman and that if I need a little more than a couple of weeks it is alright and I am not just being a bad patient.  I will already be on short term disability and I plan on staying on it until I can work without being in pain.

    Thanks for the encouragement,

    Becky 

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  • Kristinka
    Kristinka Member Posts: 520
    edited January 2010

    Good for you, Becky!  I was so relieved after I decided to go on disability.  Now when I have a terrible night or painful day, at least I don't have to be productive as well.  

     Papapesto, my heart goes out to you.  I can't imagine having to get used to a CPAP machine and TEs at the same time.  And I don't think any TE pain you feel is phantom - I think it's all too real!  Your TEs are stretching your pectoral muscles, and your pectoral muscles are in pain because of this.

    OK, time to do some stretching...

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  • Erika09
    Erika09 Member Posts: 145
    edited January 2010

    Did anyone here used to eat flax meal but stopped because of Tamoxifen? I am getting so many contradicting opinions and reports on this! (I posted the same ? on EC thread)

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  • Angel10
    Angel10 Member Posts: 682
    edited January 2010

    I too read to avoid flax....so it is out of my diet!

    God Bless!

    PS I don't eat tofu anymore either...I miss that!!

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  • Nedeza
    Nedeza Member Posts: 666
    edited January 2010

    First it was something about flax seeds...now tofu???  Your talking to a Japanese who loves to eat tofu...pretty regularly.  Is this something I need to avoid?  I missed the comments on tofu so what's up with the tofu if I may ask???Surprised

    NAE

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  • Angel10
    Angel10 Member Posts: 682
    edited January 2010

    Nedeza,

    If you started to eat soy or tofu since early childhood, there is probably a benefit....but it gets dicey from there...

    For the rest of us it looks like supplements are worse than real soy for BC....but if you are on Tamoxifen, you should stay away from soy all together....and that would be me!

      Otherwise...it is great! :)  Read below...and God Bless!

    Reasons to be Shy About Soy
    While soy may help relieve your hot flashes, researchers caution postmenopausal women against having too high a dose of soy, particularly in the form of supplements that contain high amounts of soy isoflavones. And if you've had estrogen-sensitive breast cancer1, and are taking a selective estrogen receptor modulator2, such as tamoxifen3, or an aromatase inhibitor4, such as Aromasin5, it's a good idea to refrain from soy. The soy isoflavone genistein6 may counteract estrogen suppressors - and that would make your post-treatment medication less effective. After you've completed a full course of estrogen suppressors (usually 5 years) you can start including soy in your diet again, in modest amounts. If you still want the benefits of isoflavones, try dining on legumes, whole grains, and nuts. On the other hand, a good reason to avoid soy altogether is if you know that you're allergic to it. You should also skip soy if you have a thyroid disorder or goiter.

    The Bottom Line on Soy and Breast Cancer
    You may get the most benefits from consuming soy isoflavones such as genistein, if the isoflavones come from food - not from nutritional supplements. The American Cancer Society says that concentrated extracts of soy isoflavones may encourage tumor growth, and should be avoided. Women in the Japanese study who had the lowest rates of breast cancer had consumed soy from childhood, or at least from pre-puberty. Post-menopausal women should not overdo soy products, because the powerful isoflavones mimic natural estrogen, which fuels 80% of all cases of breast cancer. Adults who start a diet7 that includes 25 grams of soy foods daily will experience some benefit from soy isoflavones (lower cholesterol, better heart health) but will not gain the same protection from cancer as people who have eaten soy regularly over a lifetime.

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  • Nedeza
    Nedeza Member Posts: 666
    edited January 2010

    Thanks Angel for the FYI!   Who knew?!

    Hugs,

    NAE

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  • pastapesto
    pastapesto Member Posts: 42
    edited January 2010

    Thanks, Kristinka.  Now that I've decided to take disability for the entire chemo course, my life has a shape to it.  My boss is being very supportive.  

    The CPAP was a nuisance, but when the tech told me I could heat up the humidifier temp it helped a lot..  spraying cold water on my nose was not very sleep-inducing!

    And, I went to REI and got a Moving Comfort Grace zipfront athletic bra.  It looks like armor, but it does keep the TE's from flopping to the side when I'm lying down.  Maybe I'll stitch little daisies on it...  NOT!

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  • Kristinka
    Kristinka Member Posts: 520
    edited February 2010

    Papapesto, I'm glad you are taking it easy during chemo and TEs.  I love your profile picture.  What are you cooking?  Here's a great recipe I found on allrecipes.com for asparagus and goat cheese quesadillas.  (I used scallion instead of cilantro):

    Ingredients:
    2 tablespoons extra virgin olive oil,
    divided
    1/2 pound fresh asparagus, cut into 1 1/2
    inch pieces
    salt and pepper to taste
    2 (10 inch) flour tortillas
    4 ounces herbed goat cheese
    1/4 cup chopped fresh cilantro
    fresh cilantro sprigs, for garnish
    Directions:
    1. Heat 1 tablespoon olive oil in a skillet over medium-low heat, and cook the asparagus, stirring occasionally, until tender and lightly browned. Season with salt and pepper, and remove from heat.
    2. Spread one side of each tortilla with 1/2 the goat cheese. Place 1/2 the asparagus and 1/2 the cilantro on each tortilla, and fold tortillas in half over contents to form quesadillas. Brush the outsides of the quesadillas with remaining oil.
    3. Place the quesadillas in a skillet over medium-low heat, and cook 3 minutes on each side, or until lightly browned. Cut in half and garnish with cilantro to serve.
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  • Kristinka
    Kristinka Member Posts: 520
    edited February 2010

    Oh well, formatting didn't work out, but the recipe is great...

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  • Denali
    Denali Member Posts: 347
    edited February 2010

    Hi everyone, I've been lurking on this board ever since I had my explanders placed in October.  Like many of you, I just thought I was being a wimp about the pain after surgery.  I was on pain pills for 3 wks and was beginning to imagine my family having to do an 'Intervention' for me to get off. 

    I'm now up to 700 cc's and was supposed to have my last fill a week ago, but told the PS I'd explode if one more drop was added.  That's when she told me the good and the bad news:  She wouldn't give me another fill, but I'd have to go into the OR and have them 'adjusted.'  It seems they've moved and are not positioned where they should be.  I should have never named the 'girls' Thelma and Louise!  Too mischievous.

    So has anyone else on the board had to go in for 'extra' surgery to have foobs moved?

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  • Angel10
    Angel10 Member Posts: 682
    edited February 2010

    Denali

    I was adjusted AFTER the exchange, not before...we did the adjustment at the time that I had the fipples done....

    God Bless!

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