continued Tissue expander pain!!

Options
1…1415171920…105

Comments

  • Birki
    Birki Member Posts: 80
    edited January 2008

    Hi Linda, Thanx for the info and quick response. When I met with my PS before my mastectomy both he and my surgeon told me that I couldn't have the expander put in until after radiation because the radiation would attack or somehow damage the expander.  I was very dissapointed that I couldn't get it all done during the mastecomy, but I was told I really didn't have a choice.  I was also aware that radiation may/will change my skin which scares me, but I'm focusing on getting through chemo (just 4 more to go) before I let myself get too nervous about that part of the process.  I will absolutely be meeting with both my radiologist and PS before I start my radiation.  I keep hoping for the best and taking one day at a time. Thank goodness for websites like this and all the women who are so willing to help mentor someone like me through this... Quick question - Do you or anyone else know whether a surgical drain(s) is necessary when they put in the expander when it's done separately from and months after the mastectomy?  I hate those darn things! 

    · Share on FacebookShare on Twitter
  • Teribear
    Teribear Member Posts: 60
    edited January 2008

    Birki,

    Hi and welcome.  I had my double mast.'s last July 5th.  I had my expanders put in Oct 18 and I did not have to have drains and cried when I woke up and found out I did not have them, I was so relieved.

    I think I heard someone say they didn't have them when they got the exchange also. 

    Denise am so glad to see you back and chatting!  How are you feeling?  How do they look in comparison?  I did read they were black and blue and ribs hurt?  Hopefully, they will get a little better daily.  I can't wait to hear your oppinion once they are settling down.  I want to hear if they look much different than the turtle shells.  Did you have to have drains??

    Teri.

    · Share on FacebookShare on Twitter
  • Sharon67
    Sharon67 Member Posts: 154
    edited January 2008

    Denise, well you were the first in our little exchange group to go first. I can honestly say that even though you have reminded us all of what we are in for "again", I still am counting the days until my final surgery. (If all goes well, Feb. 14th is my lucky day) I just have to make sure I can stay away from all the cold and flu people up here in the wonders of winter wonderland. (Michigan) I'm so sorry you have to wear the "bra from hell" I forgot all about that thing! Do you have any drains? Some people get them, some don't. Does anyone know why this is?

    Birki,

    Welcome to our little "gripe site" you will find the women here are wonderful with their stories and advice. As for my own little input, I had a double mast. back on Oct 16th. They did recon. at the same time. I had tissue expanders placed at this time. My total fill projection for my expanders is 400cc's and this will give me a very full B cup. If you read earlier posts, I was lucky to fill a A before BC. The expansion process has not been too bad for me. I do experience discomfort the day of filling as well as about 48 hours afterwards. I have found that daily stretching as well as coco-butter lotion on my chest helps with the skin stretching. I can't give you advice on Rad. because I did not need this treatment. I wish you well, and again welcome to the group.

    Sharon

    · Share on FacebookShare on Twitter
  • denise1956
    denise1956 Member Posts: 59
    edited January 2008

    Hanna,

    Thank you for the congrats!!! I love being  in the new club and cant wait for the rest to join.

    I knew you could do it once again..I needed not only your moral support but alas you never let me down with the humorous side of yourself. Okay lets see

    No drains

    Right boob looks great!

    Left boob is looking a little square and not as large (HUMMM!!!)small b's is all i was able to get 340cc's. I had 560cc with expanders. With my skin sparing surgery there was not alot of skin to spare.

    They are still swollen .

    My very handsome ps used saline, the ace bandage is used to put pressure on them to keep them from wanting to go up.(so I have been told).

    Took my first shower since surgery i cant lift my arms yet so my husband came in with me and cleansed the body and washed my hair. How erotic you all must be thinking (NOT !!!).

    I can have one  my daughters take a pic for me actually one of them wont even look at them. The other just is never really home. So I will try. I am a little bit of a prude. But without a head shot no one will know its me. You never know who is reading this site.

    I do have a question? Has anyone had their their ovaries and uterus removed that has had dcis in its early stages ? Just wondering if I should have taken that route I am 51 . 

    Have a good night!!!

    Stay warm its cold in NJ

    Denise

    · Share on FacebookShare on Twitter
  • Sharon67
    Sharon67 Member Posts: 154
    edited January 2008

    Linda,

    I'm so sorry to hear that your having problems with you expander's. You're not the only one though, mine also feel like flat rocks stuck to my chest. As for as staying in your pj's, don't feel bad about that, Friday that was goal for the day!!!! I think we have to remember what our bodies have been going thru lately and take the Super Star S off our chests. We as women are soooo used to taking care of everyone else but ourselves that we just forget. So wine alittle. Let the others in our lives take care of us for a while. It took me along time to practice what I am preaching, but I let the husband and kids baby me when ever I can because "this too shall pass". So don't be so hard on your recovery, it will all be over when it's suppose to be.

    Have a good evening.

    Sharon

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Hannah

    I have been to Venice a number of times, Christmas, even for Cannivale, and I love it. It is my family's homeland. They is only so many gondiers. When an opening comes up there may be a hundred guys, and girls, applying for the job. (Yes there are some women!) I intend to make the trip in June without without someone else. Don't know if you know this but Venice is in the process of becoming an independent country! Their TV and newspapers are now being printed and broadcast in Venetian not Italian.



    Teribear, It was me that asked about your job, I will email you.



    Denise

    Now Iam really scared I have to have surgery on my arm at the same time I am having my exchange. (some fool broke my elbow during my mast/recon, and it was just discovered last week. I am hoping they don't put my arm in a cast, but I bet they will. Do you have drains? If my arm is in a cast, I have no idea how I will be able to empty them. I guess the "rules" are the same as with the mast, regarding the movement etc. WOnder if we have to start all over again with those darn exercises.

    · Share on FacebookShare on Twitter
  • jsims2
    jsims2 Member Posts: 27
    edited January 2008

    Denise,

    Had complete hysterectomy with ovaries removed and I will be 40 in March.  Actually had done same time expanders were put in.  Typing from my new "bed" recliner because of pressure pain.

    · Share on FacebookShare on Twitter
  • lewisfamily503
    lewisfamily503 Member Posts: 621
    edited January 2008

    Hey Girls--Boy is this the thread that never dies!! Don't you wish your surgeon would have told you this might hurt just a WEE bit? Anyway, I had to chuckle at Hanna B.'s comment "Are you boobs looking a bit square?" YEP!! I have very distintcive square edges. But everyone on here keeps telling me not to worry so I am trying not to freak out!!! I just wanted to chime in here about the pain, because I am now four weeks from my surgery and it is definitely getting better. At first it truly felt like bricks on my chest and there was a dull ache that never stopped, not to mention lots and lots of muscle twitches. Although I am definitely STILL not in complete comfort, I do notice I am able to do more things and not be constantly thinking about these stupid expanders. I got my third fill last Wednesday (50ccs) and it was only uncomfortable for that first night. The main thing I still notice is that my skin fills like I am sunburned, but the really bad aching is going away. So hang in there. It DOES get better! The comment above about just taking it easy and lying around in your pajamas is an absolute!!! Make your family wait on you and be a "princess" for awhile. You deserve it!!



    Anne

    · Share on FacebookShare on Twitter
  • prssnprss
    prssnprss Member Posts: 25
    edited January 2008

    Birki,

    I had bilateral tissue expander surgery two months after a bilateral mastectomy, and yes I did have drains. I hate them, too, but evidently they are necessary if you want to avoid seroma. As it was, I got an infection anyway a couple of days after the drains were removed. Treated with 3 rounds of strong antibiotics and seems to be getting better. The TE surgery was more painful than the mastectomies and it took me three weeks before I could get off RX pain meds and even think about doing stretches. Now I am doing much better and can't say enough about stretching and self-massage to help with the expander pain . . . or as some women have called them. . . "turtle shells" poking into your ribs and sternum. I am also doing this in between my chemo treatments, which I wouldn't recommend, and therefore may be having more pain than most people. Good luck to you!

    Melinda 

    · Share on FacebookShare on Twitter
  • jsims2
    jsims2 Member Posts: 27
    edited January 2008

    Glad I am not the only one still awake...  Anyone else still out there?  DH is in bed and it gets lonely down here alone...

    · Share on FacebookShare on Twitter
  • denise1956
    denise1956 Member Posts: 59
    edited January 2008

    Jean

    Please I hope that I haven't scared anyone (not my intention). I just don't know how they need to position your arm. I was told to keep my arms pretty close to my body at least for the first week. I go back this wed for a second appt. No I did not have drains. I would most definitely discuss this with both doctors asap. You must be in alot of pain if your arm is broken? 

    Good Luck

    Denise

    · Share on FacebookShare on Twitter
  • denise1956
    denise1956 Member Posts: 59
    edited January 2008

    Janet,

    If you don't mind me asking what type of cancer did u have? I was getting a little paranoid lately? I do get pap smears every year as well as mamos and look where that got me !!!!

    Oh I am so jealous of your bed I could not sleep one bit last night being on back. My butt is sooo red.....(sorry tooo much info).

    Well another day and the sun is out . Let it be a great day for all.

    DeniseCool

    · Share on FacebookShare on Twitter
  • denise1956
    denise1956 Member Posts: 59
    edited January 2008

    Teri

    Just wanted to say hi and hope that u are doing well today.. I cant remember and I am too lazy to read what I wrote yesterday, but no they don't look like turtle shells . The right one is really pretty, but I am very upset this morning the left one looks and feels considerably smaller. I am so upset. I cant go through more surgery again. I am trying not to think about it until my next appt this wed. My husband says that I should call the ps, but i don't want to be a pain. After all I will be seeing him Wed.The pain is gone its just the bra that digs into my rib cage that is very uncomfortable right now.The ribs are very tender. Talk to u later!

    Denise

    · Share on FacebookShare on Twitter
  • denise1956
    denise1956 Member Posts: 59
    edited January 2008

    P.S.

    Does anyone one else have saline implants after their exchange? It seems like everyone is getting silicone. HMMMMM!!!!

    Denise

    · Share on FacebookShare on Twitter
  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited January 2008

    Denise, I have saline implants now. I was exchanged Nov 2 and I am happy with them. My PS uses saline for the breast recon and the silicone for the augmentation. He said that the silicone are round and do not fill the upper part of the chest that was removed during the mastectomy. The exchange did relieve the discomfort that I had during my expansion process. I got my nipples done Dec 20 and am scheduled for my tattoos on Jan 29.

    Sheila

    · Share on FacebookShare on Twitter
  • denise1956
    denise1956 Member Posts: 59
    edited January 2008

    Sheila,

    Thanks for reassuring me that I made the right decision. That was the same response that my ps said to me. I am just 4 days out of my expanders. Right now the right looks smaller than the left . I hope maybe that the right one is swollen. Did you have to wear a sports type bra with a ace bandage on top to hold the breasts down.The sports bra is very tight on my ribs and giving me pain other than that its really not to bad. Good luck to you !!!!

    Denise

    · Share on FacebookShare on Twitter
  • Jani
    Jani Member Posts: 80
    edited January 2008

    I am going to have plain silicone (not the gel) for the permanent implants. I have not heard that saline hang differently than silicone (maybe they do hang differently than the cohesive silicone gel?). The only difference that I have heard of between saline and silicone is that silicone is much softer, and then of course the controversy over the possible health hazards of silicone leaks. For me, I have studied the results of current studies on this and am convinced that they are safe, so am going with this as the permanent implant.

     

    By the way, someone was asking about the type of expander each of us has. Mine is an Inamed Style 133V Breast Tissue Expander Matrix, with the Magna-site port. It sounds to me like the detached port is much safer in terms of preventing accidental puncture of the expander with the needle. If I were to do this all over I think I would ask for that style.

     

    Denise, I am so sorry that you are not happy after your exchange. Is the left breast getting progressively smaller, or did it not get as much saline as the other? I would not hesitate to call the PS. If I were a PS and you were my patient I would want to know right away if you are unhappy, worried or distressed. Trust that he/she will work it out.

    I know it is disheartening when you anticipated that you would feel so happy at this point. Try to be patient. There is all the swelling, muscle relaxation, and settling that has to happen post surgery and this takes time. You have come such a long way. You are almost done. Hang in there.

    I really feel for you. I know I will be at this same point in a few weeks.

    Jani

    · Share on FacebookShare on Twitter
  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited January 2008

    Denise, I wore a bra only for a couple of weeks after my bilat mast then I if I wore any undergarments I wore the camisoles with the shelf bra. Since I had my nipples done, I have not worn anything because of compressing the nipple. Each PS has his own way of doing things. I was worried that one side was higher than the other but he said that the expander was just expanding the muscle/skin and the perm implant would look more natural and even with each other and he was right. It does take time for the perm implants to fluff and drop, I see changes in the way that they are sitting almost weekly and I am happy with the results.

    Sheila

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Denise -

    It's not my arm that is broken but the bones in my elbow. That's why it has been so swollen and painful since my mast/reconst.

    I am having the same problem with my bras. I first started with a sports bra, but it became too tight very quickly. I am wearing an old bra that has stretchy cups. It's a "D", but I was unable to wear it prior to my surgery because "my cup run it over". I think it's really about a "C", which is what I am shooting for. One side looks great but the other appears to be losing ground each day. I hope I don't have a leak like Teribear. I will be having my next to the last fill on Thursday. I hope my PS says we can stop with that fill and for go the last one. Some women on this site have had their implants placed without any expanders, so I am wondering just how important that "over fill" really is on our finished foobsBy the way I will be having saline, as I have a pacemaker and cannot have an MRIs to check for leaks..

    · Share on FacebookShare on Twitter
  • Hanna60978
    Hanna60978 Member Posts: 815
    edited January 2013

      

       

        

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Hanna

    Yes the pasta is the "thing" the sauce is only a dressing like on a salad. I eat the same way here in the US. A small amount of pasta, then a very tiny piece of meat or fish, or none at all, then salad at the end. How did you like the lack of dolci (sweets) True Italians eat a little cheese and sweet wine for dessert.

    · Share on FacebookShare on Twitter
  • Hanna60978
    Hanna60978 Member Posts: 815
    edited January 2012

    .

    · Share on FacebookShare on Twitter
  • Hanna60978
    Hanna60978 Member Posts: 815
    edited January 2012

    . 

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Hanna

    No I don't think I would like octopus, never ate my grandma's. I do love calamari and black pasta, made with squide ink is great. (So is Andrea Bocelli!)

    As for my elbow, yes it could have been repair and healed if my PCP actually check ed, but she was double booked and couldn't see me in almost 6 months. NOw it will require surgery. I guess the broken bones have healed in the wrong way and will have to be removed.

    No I cannot wait for the expnaders to be removed, I fear they are interferring with my PM. As long as I OUT for that surgery I would perfer they fix my arm so I can get all this c--p over with ASAP. I will have had 7 surgeries in less than a year. DId I mention all the BC was removed in my Lumpectomy and the MAst/rect was done in ERROR? (which has caused me to have 3 surgeries so far and 3 more to go)

    · Share on FacebookShare on Twitter
  • Computergirl
    Computergirl Member Posts: 1
    edited January 2008

    I was diagnosed with breast cancer June 2006 I had bi-lateral mastectomy in august,2006 with breast reconstruction at John Hopkins.. One flap failed so they put an expander in. It hurt so so bad for weeks. Never had fluid put in but it grew very large. Sept 6, 2006 it was removed badly infected.   I've had pain every since....

    · Share on FacebookShare on Twitter
  • Hanna60978
    Hanna60978 Member Posts: 815
    edited January 2008

    Oh hey computergirl, I'm so sorry - and even shocked to hear this. Johns Hopkins Hospital was/is supposed to be a great place - wasn't it? 

    Right here on these boards there were posts about that ice skater, Dorothy Hamill, who was just treated for breast cancer there - only a couple weeks ago.  Who was the plastic surgeon who did your flap?  I read somewhere they only had a couple who did those microsurgeries at Hopkins and only a few in the whole US who are known for doing a lot of them so they do them well.  I think the one in Louisiana, Robert Allen (?) somebody correct me if this is wrong - is known for being really excellent at that type of surgery. 

    I hope you have a good doctor now - are you in the area of Johns Hopkins?  If your problems began with your surgeries at Hopkins, then they really owe you a better life in my opinion.  Are you afraid to contact them?   Don't be.  Maybe there are other doctors now there than the ones who worked on you in 2006.  Oh, please don't suffer in pain without calling them. 

    There is an RN name Lillie Shockney who is right here affiliated with BC.org and she is an outreach nurse and breast cancer specialist with Johns Hopkins and you should contact her by email immediately.  I'll come back and post her email and phone number after I look it up.  She could be the one to help you through the system there if that's where you live.  I'll be back in a few minutes.  Hanna 

    OK, I'm back.  Contact at Johns Hopkins Hospital is:

    Lillie Shockney, RN. B.S M.A.S.  

    email her at:    shockli@jhmi.edu

    Lillie's phone numbers are:  410-614-2853 

    To make an appt. call: 443-287-2778

    Email and call Lillie and tell her what's going on because she and Johns Hopkins are strongly affiliated with bc.org here. 

    There maybe more numbers to reach her by searching the medical members and sponsors list on the welcome page here when you logon.  Please get going on this and get back to us here.

    Please do it tomorrow and write us back.  You should be helped through this trial in your life.

    Take care ~   

    · Share on FacebookShare on Twitter
  • katesf
    katesf Member Posts: 139
    edited January 2008

    Sharon & Teri.....all I can say is "wow! You are both truly amazingly strong, tough women. I know you've both been an inspiration to me. I wish you both well and send you gentle hugs. God bless.

    Katie

    P.S. Hey Sharon, that story about flashing the ex-wife was great. You GO GIRL!!! She will never forget that experience, which is a good thing.   

    · Share on FacebookShare on Twitter
  • Sharon67
    Sharon67 Member Posts: 154
    edited January 2008

    Goodevening Ladies,

    Well I have had the day from H***!!!!!! I need to vent....again. It starts out that the car won't start from sub-zero temp's in Michigan. Turns out it's not the battery, that would be too simple!!! Then the lovely teenage step-son (who is 15 going on 25) and I get into the BIG One. You see I am the evil stepmother, you know the kind, the one that searches her kids room just looking for drugs. Yep, that's me! I'm the Mom who means no is no, and still grounds children. Well the little darling was in daddy's office today and was very upset that I once again searched his room and found empty baggies, a pipe and of course rolling papers. How dare I go through his things. Who do I think I am? I proceed to explain that I am the evil step mom, and will continue to search and seize until it stops. I try not to create a "moment" in his dad's dr. office, but you know us step moms, it's always are fault. The ex-wife is there, she realizes the problem but her and the father (my DH) seem to think that just because the child is an all A student, how bad can it be! So for about the last 4 weeks I take everything I find and set the items on the Ex-wife's desk, and say you deal with it....I'm just the step-mom. Mind you I too have a 16 year old daughter that lives with us full time and I am always searching her room, car, etc and if I even for one minute think she's smoking pot, she get's drug tested and if positive (which was only once 6 months ago) her life get's completely taken away as she once knew it was. Well today I was just not in the mood...not for this child, I just keep walking away, not in the mood to argue. I finally made it back to his fathers office and of course he followed, calling me every name he could think of and I just had IT! I looked at this child (who is now 5'10" and a big hockey and football player) said "fine, be a pothead...I just don't give a S*** anymore, but not at our house...stay with your Mother!!!! And tried to walk out of the office and this child was so irate and out of control (I think he was high, again..) that he pushed and pinned me into the doorframe as I was walking past him. Now there is one thing that I will never tolerate from anyone....and that is any form of physical violence. And my many years of Akido took hold, and I grabbed this child by the neck and very quitely told him I would flatten him before he knew what ever hit him if he EVER, I MEAN EVER, tried to lay a hand on me, EVER again. I think this really shook him up because he never seen dear old stepmom get so angry and loose her cool. I never yell, I am usually very calm, (it's the ex-wife that is the yeller) but I just feel awful that I let my emotions get the best of me. I lost my edge, and that is so not like me. To make matters worse, the boy freaks, leaves the office, but takes my car keys out of my truck, so I get stuck at the office for over an hour while his mother goes out and finds her missing son. It turns out he got a ride back to our house and what does he do....He hides my brief case, takes my other set of car keys (to the car that has to be towed tomorrow) and hides my laptop!!!! It's been a great evening, I have found everything except the laptop. He's at his mother's tonight, DH is very upset, this all just has to be my fault!!! Of course it is, let's not admit that just MAYBE the honor student really does have a drug problem, that's why I find soooo many empty baggies that smell like pot! That's why he pinned the mean old step-mom against the wall and bruised the S*** out of the top of my expander! And to think DH didn't want me to go back to work until after the exchange because he was worried about me getting hit in the chest from one of my students!!!!! I'm sorry, I'm having a moment again, crying again, which is so NOT me. I'm usually the strong one right...the one that gives advice, but today was just a suckie day!!! My chest is killing me, I feel awful that I lost control with a 15 year old,  it was just all too much. I was called the most horrible, awful, things from that boy, and I have been in his life since he was 7! Now according to him and his older brother, I am just a money hungry B****, that does nothing all day except live off of the Doctor who just happens to be daddy. According to the kids, I could have been back to work ALONG time ago, I'm just milking it. (it's only been alittle over 3 months since my first surgery) I guess I'm just hurt, and tired. I'm sorry everyone, I just needed to vent. Sorry this is so long. Sharon

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Sharon, No problem vent when you need to - it might help.



    I have been going thru a similar problem with the MIL form Hell. She never wanted my dh, even made him take a city bus (alone) to school when he was FIVE years old. Today, she'd loose custody. He moved to LA about 20 years ago and heard form her maybe 10 times thru the years. When her husband died, (not dh's dad) she called and demanded my dh fly to NY to bury him. Well when he arrived, he discovered there was no burial. (Winter issues I guess?) As she was all alone, I talked her into moving out West. (mistake). Well she wasn't in my home 2 weeks when I was physically attacked by her. I threw her out of the house and would not allow her to return, do to her violence. I told her she could stay on my boat until she located an apartment. That was 4 years ago last October. She will not get off my boat and I want it back! (it costs me a fortune and she's ruining it.)

    Well, I have tried and tried to "bond" with her and after a year or so, allowed her to visit us, once in a while for dinner. I invited her over to make Christmas cookies last month and out of nowhere, she attached me again. I not only have expanders but a pacemaker. Yep, she hit me right in the area of the PM and the top of my expanders. My DH was not home and believes his mother when she said she claims she never touched me. Guess you can tell - I am looking for a good divorce attorney.

    You've really got a bad situation, your DH and his X work together....OMG.

    · Share on FacebookShare on Twitter
  • jsims2
    jsims2 Member Posts: 27
    edited January 2008

    Denise,

    I have BRCA1 gene positive for bilateral Breast Cancer.  I had 1 tumor in the right breast and 3 tumors in the left and on node out of 21 positive.  Working on a year now of being cancer free.  I just felt that since I was triple negative that it was the best choose for me to have my ovaries removed.  I have a 5 year old and 2 year old daughters and I plan on being here for a long long time...

    · Share on FacebookShare on Twitter

Categories