continued Tissue expander pain!!

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  • duneoaks
    duneoaks Member Posts: 96
    edited January 2009

    Just wondering if any/all of you are happy you went through the pain of expanders.  I had my unilateral mastectomy on Jan. 6, 2009 and an expander put in place the same day.  I am getting ready for my first fill and am beginning to wonder if the discomfort ever ends.

    Helen

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Most definitely!!!!  I certainly did not enjoy the process, but I am SO happy with the outcome.  I had my switch to permanents on 12/4.  I love my new foobs!  They are saline, soft, and I had no pain issues after the exchange.  I just started back to weightlifting and am feeling GREAT!!!!

    Hang in there ladies, it will be worth it in the end!

     xo,

    Sue

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  • sam1991
    sam1991 Member Posts: 331
    edited January 2009

    ON Eagles Wings.....I'm so happy you're back to weightlifting. I'm very athletic.....gym rat in the winter and outdoor rat in summer. So there is exercise light at the end of the tunnell. I keep my little mantra in my head that this will all be worth it. 

     Estepp...thanks for the encouragement. The fill initially helps....but then sneaks up on you that night. I'm whispering this....but I think the Neurontin is the answer for the burning pain. I'm not burning...just the usual pressure...fingers crossed for Tuesday because I plan to fly out to cali feb 16th to take my son to visit his first choice college that he got into!!!!!  MA to CA. Long trip but should be far enough out of the fill. He'll do the luggage and I'll do the opiods....LOL 

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited January 2009

    Lorraine - I have my fingers and toes crossed for you my dear. Best wishes! - Jean

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  • warrior
    warrior Member Posts: 86
    edited January 2009

    What do the muscle spams feel like?  Is it a stabbing pain?  I've had a pain around the "edge" of my expander right near my sternum.  I thought it was even having a heart attack because the pain is in the heart area.  I notice it even more when I lay down and especially when I start to sit up!  Will pains like this get worse after fills??  I'm feeling discouraged already and I haven't even had my first fill yet since the initial surgery!  Help?!

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  • fairy49
    fairy49 Member Posts: 1,245
    edited January 2009
    warrior, don't panic! I had the same thing, you have to remember that you have no breast tissue to "cushion" the expander from your ribs etc, so as they fill the pressure is going to push into these areas and be quite uncomfortable, or lets be honest down right painful at times! But it does get better once your tissue expands and your body gets used to having them in so hang in there! Just stay ahead of the pain, take meds before your fill and after and if your PS gives you muscle relaxers, take them! don't try and be brave at this point, if you need the meds please take them. Keep us posted!
    Lorraine ox
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  • Baxter
    Baxter Member Posts: 234
    edited January 2009

    Fairy49 - 

     My story is very similiar to your. I started getting some red on my expander 4 days before my exchange. It was hurting, but with expanders who can tell what's good pain and bad pain? It was over Christmas so I saw another dr. in the practice that Friday who sent me home on oral antibiotics. My regular PS called everyday and over the week end.

    I was taking tylenol for the pain which masked my fever too. When I went in for the surgery Monday I had too much infection and they had to remove the expander. SO ...back at square 0.

    I'm so glad they caught yours in time. Having this set back has really been a big hurdle to overcome.

    Sounds like they are right on top of things and all will go smoothly for your March exchange. I will keep cheering for you!

    Candi 

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  • fairy49
    fairy49 Member Posts: 1,245
    edited January 2009

    Thanks Candi! I am so sorry that happened to you! quite frankly I have been terrified this past week..........the IV antibiotics have been a trip too.........i am infusing myself at home and oh my goodness what a comedy!! I wished I would have video taped my husband and I attempting to do the first one by ourselves last night, it was a joke!! I don't have a medical degree! I have no business doing this myself LOL!!! oh well! the nurse came back out this morning and showed me AGAIN how to do it! so moving on!! the foob isn't red at all today so I am keeping everything crossed that this is all working! Your story is a good warning though, because I was super tempted to just ignore it as I had no pain or fever, but if I had I probably would have just taken a tylenol and not thought too much about it, just goes to show how helpful these boards are!!! big hugs to you!

    Lorraine ox

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  • sam1991
    sam1991 Member Posts: 331
    edited January 2009

    Fairy49.....I just noticed the Huntington Beach CA. That's about where I'm bringing my son to look at Chapman University. It's in OC. He'll likely play football for them. He wants to go to medical school and believe me....after taking care of me....he's my only child.....I believe he will make a fine compassionate MD. Took me to my BM then took care of me post op....including polishing my toes in after a omg meltdown...LOL. Good luck to you. I'm a hospice nurse so I'm in homes showing people how to do things they never thought they could....hope the nurse was good to you. Sounds like your hubby is!!!!

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  • Baxter
    Baxter Member Posts: 234
    edited January 2009

    Warrior,

    Will it make you feel better or worse if I tell you that I think what you are feeling is normal. I felt and thought the same things you are experiencing. And you are right, it feels tighter as you sit up or lie down. When I experineced my expander for the first few days I gained a new respect for how many muscles the upper body has and how they are connected. I think I felt every one !

    I say ditto to what others have said. Don't be a "warrior" about not taking pain meds. It doesn't do you any good to tough it out. In fact, I found that if I didn't take meds when I was in pain, it just wore me down more emotionally as well. Then you are no good to others or yourself.

    It seemed to me that I felt the pressure in a different area after each fill. When you think about it, the TE is unfolding over time so you will feel the pressure differently. Most people say doing the dr. recommended stretching exerices help to loosen things up, they helped me. And try to keep in mind, this won't be forever...there is something great to look forward to for all your pain!

    Hang in there!

    Candi 

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    Just a quick note...

    Sam... awwwwwwwww your son is a doll! What a sweetheart! I only had sons and when I hear stories like yours I just have to say.ahhhhhhhhhhhhh.. gotta love our sons!

    Laura

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  • warrior
    warrior Member Posts: 86
    edited January 2009

    Thank you everyone for your encouraging words.  It is very comforting to know that I have you wonderful people to relate to while going through all of this.  And yes, I will take my pain meds with pride!! :-)

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  • sam1991
    sam1991 Member Posts: 331
    edited January 2009

    Jackie300.....I had the genetic testing done due to my familial history. It took about 3 1/2 weeks to come back and when it did...I found out I was BRCA 1 positive. The choice for me was simple and I have never looked back, not even through this horrible TE pain. I had my ovaries and tubes out 11/20/08 then a prophylactic BM with TE 12/10/08. I opted to keep my uterus because there is really no correlation between the gene and uterine ca.

    My genetic testing was covered by insurance. Some insurances don't cover it or do only up to a certain amount. I believe the test is around $3,500. It's only sent to one lab that does all the testing at this point. I truly believe getting the testing done has saved my life. I'm looking ahead at my years...not back at them.

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  • fairy49
    fairy49 Member Posts: 1,245
    edited January 2009

    sam1991! Your son sounds like mine!! (just have one also!) are they not the sweetest! Your son will LOVE Chapman its very highly thought of and a great campus, many of my friends kids go/have gone there! I had a wonderful nurse come by, actually had two but the other one scared me, poked me 5 times trying to change my IV ouch! So I requested the other lovely one come back and she did, so I am feeling better about the whole self infusion thing at this point. God Bless you for doing what you do!!

    Lorraine ox

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  • sam1991
    sam1991 Member Posts: 331
    edited January 2009

    Hi Lorraine

    My son is definitely awesome. When my friends said...oh you're gonna wish you had a daughter when you go through this....no way. My tape came off the scars for the first time last night and he was right there checking for signs of infection. Offered to take me to PS for fill tomorrow...hmmmm maybe he just wants to cut class...lol.

    I'm glad you are more comfortable with the infusion process but sorry you're having to go through it. Always advocate for yourself. If you see something that's not right or just doesn't "feel" right...call that nurse....use everyone and everything you can to get through this.

    Showed my son the shout out you gave for Chapman. He smiled. It's a little overwhelming to him to think about going across the country for college. I'm excited for him. Sad for my empty nest, but glad I've raised a child that will ultimately contribute positively to the world.

    I hope you are feeling better. Fill for me tomorrow....hopefully talk about exchage!!!!

    xxoo.....gentle ones as usual!!!! 

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  • Jan1
    Jan1 Member Posts: 326
    edited January 2009

    Thanks,  I postponed my fill until next week.  I am very small busted anyway and I had 200cc at the time of surgery and 100 cc added 2 weeks later.  The scar is generating stretch marks and I am just now having nights where I can sleep through.  I should be fine for next Tuesday.  The fills go great, but the muscle spasms that are more annoying than painful as the muscle stretches.  I see the oncologist Friday to find out what the exact diagnosis was.  There was some speculation as if it was only DCIS with microinvasion.  Now we have to determine if I go on to take Tamoxifan or other medication as I do know that I was ER and PR +    Jan

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  • sam1991
    sam1991 Member Posts: 331
    edited January 2009

    Hi all

    Just had my 2nd fill. My PS put in 100cc again. I'm now up to 560cc. My expander is 600cc and we will expand in 4 more weeks to 660cc. That will be my last fill. Then 4-6 weeks later I'll get my exchange surgery....yee haw. So....my tips for comfort....

    Jan1...you are so right, The airplane u shaped neck pillow is amazing. Very comfortable.

    I have been on Neurontin for the nerve pain since last Thursday. It has been like a miracle. I still have Horton on my chest but he's not wielding a burning knife anymore. The burning pain is gone. Please....if you have this type of pain, talk to your PS....no amount of narcotics will help that type of pain. You need the right med for the right pain. Valium or any other muscle relaxer should help the spasms as does hot showers/baths if your scars are healed. Don't be afraid to take the medicine.....it doesn't mean your weak.

    Olive oil has been good for the stretching and scars. Stays on your skin longer than any type of commercial cream or oil. My PS laughed as he couldn't get the bandaids to stick to my skin after my fill because of the oil....and I had even showered before my appt!!!!

    Most of all read back through all these posts.....everyone has experienced what we are going through....the common thread....we will get through it. We are here to help ourselves and each other. We are strong and we will live long healthy lives.

    Peace to all 

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  • Jan1
    Jan1 Member Posts: 326
    edited January 2009

    Sam1991,  I sure am glad that the pillow worked for you.  I have the hardest time lying down and trying to get comfortable with the "rock" on my chest.  I am having a great day, the first with no spasms and I have had 2 nights of sleep.  The common thread and tips are what keeps me going.  It is very scary when you get differing opinions about treatment and choices in care, and you dread making a wrong choice.  Now I have to see if the oncologist is going to put me on hormone inhibiters of some sort.  I see her tomorrow, so that is another Dr. appointment to get out of the way.  She did tell me in November that if I had the mastectomy that she would be "less inclined" to use post mastectomy medications.  My goal is to dance at my grandsons wedding, and since they are only 18 months and 3, I figure that this is a good goal.  Having a purpose and a goal makes each day a little easier.  I do have to go back to work on Monday and that is a little intimidating for me, but I am taking one day at a time and I can only do what my body and spirit will allow, so I just have to pace myself.  Jan

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  • traceyz
    traceyz Member Posts: 745
    edited January 2009

    Sam, Thanks for sharing i had my last fill on Tues. I ended at 575 YAYYYY anyhow you right we will all live long and healthy lives.



    Tracey

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    Congrats Tracey! What size are you at 575? I will be at 320 tomorrow and should be done.. that should make me  a 34 C... I almost fill it out now...

    and Tracey, if I may add.. you have the MOST UPBEAT attitude about all this. Are you just being nice to all of us...( smile) or do you never get down about the BC! Your attitude is simply awesome!

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  • traceyz
    traceyz Member Posts: 745
    edited January 2009

    Laura,

    You are so sweet. Yes of course I get down about BC sometimes. I get scared and I even sometimes feel hopeless. But cha know what. After I throw a pitty party for myself I stand up, dust off my knees, and lift my head back up. What gets me through is that I believe that this happened for a reason. Yes I had my plan but God has his plan, and guess who won. And thats fine, because as long as I can help someone get through this HUGE bump in the road, then I am doing exactly what God intended. I heard Patrick Swayze say that life is not about surviving the storm but learning to dance in the rain. I believe that. I reach out to my BC sisters because I feel we can all learn to dance in the rain together. You are so precious.

    Tracey

    BTW I was a D cup at 550, now at 575 I am not sure. And congrats on your last fill!!!!!

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited January 2009

    Estepp - After your next fill we will be matching. Do you know when your exchange is? Will it be in March? What I find interesting is how uncomfortable the TE's stay, even w/o new fills. I am looking forward to the exchange! Take care everyone! - Jean

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    Hi Jean,

    I am not sure when surgery is. I was thinking you and I will be about the same time... you might be a little ahead of me unless I can get him to do it in Feb...LOL... I bet it will be the end of March.

    I will let you know!

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  • ngcm05
    ngcm05 Member Posts: 134
    edited January 2009

    Woohoo!  Up to 550...I think next week is my last fill!  Then three weeks so the exchange is in March.  My girlfriend calls my boobs "kickstands" when I sleep at night I am propped up!  Don't think my DH agrees, though. Wink

    GG

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  • sam1991
    sam1991 Member Posts: 331
    edited January 2009

    This is so exciting! Most of us here are getting our exchanges about the same time. Another class of graduates!!!!! It's so interesting to me all the different sizes.I know for me, I am 5' 6" and weigh about 135#. My expanders are at 560cc now and they finally fit into my old 36C bras..minus the little bit up top that my PS will take from my tummy to finish the shape. He said that my ribcage's little shelf is the reason I need more cc's to get to where I was....plus a little more for my troubles...hee hee. Not a day goes by that I don't feel my coconut bra under my muscle but I'm nearing the end and I can see and feel that warm, soft light at the end of the tunnel. 

    So I thank you all my pen pal friends that have been poked, prodded, radiated, infused and drawn on for your strength and willingness to share your experiences and feelings with all of us. You all are honestly the reason I feel I am not crazy.....or alone.

    Smile 

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    We need to start a " Feb-Mar-Apr" exchange thread...

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited January 2009

    Sam - My sentiments exactly! What a great group of courageous and strong ladies. You all make me proud!!!!!!!!!!!

    Laura - Sounds great. Exchange city here we come!!!

    Take care. - Jean

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  • ngcm05
    ngcm05 Member Posts: 134
    edited January 2009

    I agree!!  We are the Dec. graduates...on to exchanges.  woohoo!

    \GG

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  • Estepp
    Estepp Member Posts: 6,416
    edited January 2009

    I LOVE the name Exchange City Jean!!! Good one! You should start the new thread! Call it your Exchange City... that way... anyone and everyone doing exchange can join in.. or, those who have done exchange can add to.... to encourage us... or maybe they need touch ups !

    Smart Cookie Jean! :) I vote for Jean to be the leader of the pack! :)

    PS... I  am at 320 now. I am a good C cup.  So PS will do on more "top off" next Tuesday and I will set up the exchange..WAHOOOOOO. I am going to shoot for the end of March...

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  • fairy49
    fairy49 Member Posts: 1,245
    edited January 2009

    I am in for the March exchange, March 3rd yiphee! am at 540cc but PS is putting in 700 implants, ummmmm, don't know how that all works! I guess I will just wait and see, just want these expanders out! :)

    Lorraine ox

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