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TE TROUBLE

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Comments

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited January 2012

    I mentioned, I believe earlier that at my uni mx I had botox in the pec muscles which allowed the surgeon to put in 300ccs at the time of the mx. I was surprised to wake up from surgery with a breast. The ps has me wearing a tight compression wrap that goes around my chest 24/7. I am a little allergetic to it so I wear it over a mx bra that I purchased at Norstrom. One week after the surgery, (maybe 2?) I had 60 more ccs put in the T.E. I'm done...no more fills :) The added fill did help the nerve pain.

    I learned that the nerve pain was not just caused by the TE but by the drain tube that wraps around the TE breast area. The first few weeks it polked a nerve so bad that it hurt to turn. It is still pretty sore, and it seems in the evening I have spasms...which I'm not suppose to have due to botox. My sternum still aches or hurts. Hopefully next week when the drain is removed it will fill better.

    My ps is leaving the drain in until it is under 20 ccs a day. I'm about 26 today ... which is good...and it's beginning to be light pink. He said he prefers to wait until later due to the fluid building up around the breast area causing more problems. He said the breast binder I wear all the time keeps the fluid from staying in the breast area. He seems to know what he is doing. The bruising is beginning to go away.

    He asked all of his patients to take several supplements for healing. In eight weeks, if all goes well I will have the second surgery to remove the TE and put in the implant. After about a month he does fg. The person who recommended me to my ps who is in the middle of a study or trial using botox showed me her breast...awesome! She didn't have as much pain or problems as I did. It will be interesting to see how the rest of this goes.

    Have anyone else there been under the botox trial study for TE?

  • ginger48
    ginger48 Member Posts: 1,437
    edited January 2012

    Fluff- I have an aching elbow and was told that it was due to lymph fluid pooling in the upper arm. You might want to get it checked out by a LE specialist.



  • fluffqueen01
    fluffqueen01 Member Posts: 1,801
    edited January 2012

    Thnks Ginger. I am going to do that.

  • chickadee521
    chickadee521 Member Posts: 423
    edited January 2012

    Fluff if you are 5'9 how tall is your daughter?  My sister and I are both 5'10 and my brother is 6'8.  I have an older nephew on my husband's side that is 6'4.  2 of my nephews were size 14 as does my brother.  My 9 yr old son is already an 8.  My daughter on the other hand is petite for her class.

    My mom was reading some of the stuff we were talking about over my shoulder...I think she got a good laugh!

  • specialk
    specialk Member Posts: 9,258
    edited January 2012

    I am the shortest one in my family.  I am 5'3", DD is 5'6", DH is 6' and DS is 6'4".  He turned 24 yesterday and when I look at him I can't believe that I ever carried him around on the inside of me!  He was 6' when he was in 8th grade!  I am adopted so I may have been a shrimp in a family of tall people, as DS is the tallest man in my husband's whole family.

  • theBCavenger
    theBCavenger Member Posts: 172
    edited January 2012

    You guys have been so awesome... and I need to call the Calvary in! The entire length of my incision on the cancer side is dying! I am seeing the PS on Tues and he has already set up the OR. At this point I am hoping he will be able to save the TE, as it seems to be getting worse and worse. I don't want to have this be something I have to keep going through! I would almost rather them pull both out, and go without then have to keep dealing with this.

    Every time I change the gauze, I get week in the knees and feel physically sick! It looks so bad... :( and my husband can't look at it, and I'm too proud to put my teenage daughter through it...

    Need to stop worrying and crying...  

  • MTnester
    MTnester Member Posts: 147
    edited January 2012

    Oh DM I am so sorry. I wish I lived near you, I would be there to help. Please know you're in my prayers. Hugs to you.

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801
    edited January 2012

    DM-I am sorry to hear of your problems.I am sending you all the mental support I can, But like you, I am not good with the yucky stuff!



    Chick and Special K-Daughter is 5'11. Son, 26, is just shy of 6'5. Husand is 6'3ish. I have a brother that is 6'8". I agree, it is hard to think about carying him. Anytime I pick up a ten pound bowling ball, I think that is what was in there!

  • specialk
    specialk Member Posts: 9,258
    edited January 2012

    dm - is your incision area that you are concerned about black or the normal skin color?  If the skin is in fact dying it will turn black and scab.  If your skin is just not holding together, that is another problem.  When I had the excisions done after they removed the black scab part they were on regular looking skin that just would not stay closed.  Sometimes your body will "reject" the TE as a foreign substance and refuse to heal.  I was amazed at how fast it healed once the TE was out.  When I had it replaced 7 months later I had no problems at all with my skin.  You do always have the option of taking them out and letting your skin heal and giving this another try later, I know that probably doesn't sound that appealing at the moment.  I am so sorry you are having this experience - we all sympathize with you.

  • Annicemd
    Annicemd Member Posts: 292
    edited January 2012

    DM I am really feeling for you. I don't post much but read these boards a lot. You and I have same stats and similar ish story. I was told they were 99% sure I didn't have cancer then they found one, then they found 2. We thought the worst then after surg I was back to stage 1. I had unilateral mx in july but expander not placed until 11th jan. PS was supposed to use alloderm but when he opened up on Wednesday he said it was 'a mess' with what looked like old blood clot and dead muscle. Theyhave sent a biopsy but say they don't think it's cancer related. I am home and drains out but now I have a rash over my original mx scar (PS used new incision- submammary) and I am ichy and red and worried skin is breaking down around my old scar but the new scar is fine. I feel ok in myself so have not contacted PS yet as I am still on antibiotics so maybe it will settle (lol, like anything else has gone to plan).

    Maybe I should call PS now. Any pearls of wisdom welcome!?

    Thank you

    Annice

  • theBCavenger
    theBCavenger Member Posts: 172
    edited January 2012

    Annice,

    Yes, you and I have had a similar road. I even had a massive hemoglobin from original biopsy of cyst! Apparently, that was hard to get out then the cancer! Lol.

    Advice...? man I wish I had the answers to navigate through this nightmare. I guess, if there was anything I wish I would have done differently, it would be to be more proactive. I was healing fine, it has been over a month since surgery, so I feel so odd to be going through this now! I kept thinking I was heeling and did not call the doctor enough!

    So If you feel something is not right about your situation, call now! If it turns out to be nothing, good! Please don't assume you will bounce back!

    Please keep me posted, and take care. 

    SpecialK and all other well wishers... I have to change my gauze soon. Will try to take a deep breathe and get through! So much anxiety still, over surgery tomorrow! I so need it, but hate being put to sleep. Pray hard gals... I must somehow be okay and not freak out!!! 

  • rubalou
    rubalou Member Posts: 89
    edited January 2012

    Hi DM:

    My PS told me to move my arms as little as possible until I got my drains out. His reason was that the more we move the more fluid we produce and he wanted those drains out asap. I got mine out at 10 days. What a relief that was. Then I could move a little more but NOT above my shoulders until about 4 weeks. It also seemed to me to be more restrictive than some others had but it seems to be different for women with TE's than for Women who dont have them. I was blessed to have no problems healing though.

    My PS was hoping to get 150cc in at surgery but could only get 50cc in. I got 50cc every 2 weeks starting at about 3 weeks after surgery. 350 seems like alot! You could ask your PS to take some out. I had one fill that was 40cc and just that measly little 10cc difference hurt alot less. If you are not having to push for time (because of insurance or pending layoff, etc.) Then you can choose to get smaller fills which might not hurt as much.

    Best wishes for your healing....Even with only 50cc's in I was in alot of pain post-op. It was not as bad as I had imagined though.

  • theBCavenger
    theBCavenger Member Posts: 172
    edited January 2012

    Rubalou - 

    If I keep my expanders, will not go larger than 350cc's. They already took 50cc's out of cancer side to try to promote healing. I never thought to ask them to do that earlier, I wish I would have, maybe then I would have healed better!

    I am so glad to hear that you are healing well!  

  • DLL66
    DLL66 Member Posts: 448
    edited January 2012

    Sending healing thoughts to Annicemd & DM13. Keep us posted on how things go.

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited January 2012

    They say not to sleep on your side or back. This last week, I'm not as in much pain and the last few nights I woke up sleeping on my tummy. My breast TE are sore, but nothing horrible. I hope I haven't done anything that could cause a problem. I am sleeping on both sides lately. It is so much easier to sleep and again I hope I'm doing nothing to cause problems with the TE. I am excited because tomorrow hopefully I'll have the drain out. Yesterday it went down to about 21...lowest yet. Hopefully today it will be lower.

  • Lifeafter
    Lifeafter Member Posts: 298
    edited January 2012

    DM - thinking of you. I too am sending you healthy healing vibes.



    Eve - You were told not to sleep on your back or sides with TEs? I must have missed something else to this. What procedure did you have?



    SpecialK - Stretched in the shower again. I stayed in there for a good half hour. Oh it felt so good!



    Going to my LE therapist this afternoon. :-)



    Michelle

  • Annicemd
    Annicemd Member Posts: 292
    edited January 2012

    DM I am sending loads of positive thoughts for a really good outcome from surgery tomorrow and a much faster and easier recovery than you will be expecting!

    Thanks to all for thoughts, I will post with my progress

    Annice

  • Annicemd
    Annicemd Member Posts: 292
    edited January 2012

    BTW my first fill at surgery was 100 mls but I am v petite!

    A

  • specialk
    specialk Member Posts: 9,258
    edited January 2012

    eve - there is no way on God's green earth that I could sleep on anything but my back! I think I speak for 99% of people who had a BMX with TE.  Who told you it was not a good idea to sleep on back/sides?

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited January 2012

    Sorry...I was told to sleep on my back only. I meant to say I was told not to sleep on my side or tummy. I figured due to pain. But, lately, I have been doing a lot of sleeping on my sides even the TE side. I'm not sure why you can't? I was in such a dead sleep that I didn't realize I had rolled over on to my stomach. I woke up sleeping on my tummy. Yes, the TE felt very sore as a result but after about 30 minutes the soreness went away. Is there a reason other than soreness that we are told not to sleep on our stomach?

  • specialk
    specialk Member Posts: 9,258
    edited January 2012

    eve -The TE is placed into a man-made space, not a natural one.  The pocket needs time to heal around the TE so that when your implant is placed it sits neatly in that pocket.  That is why after you have reached desired fills your PS will make you wait for a period between the last fill and exchange surgery.  Too much pressure on the TE in any direction from side/tummy sleeping can push it around too much and make the pocket larger than it needs to be.  This results in more "pocket work" for the PS to make that pocket the right shape.  Having to do these extra steps results in more discomfort after exchange surgery.

  • jbennett38
    jbennett38 Member Posts: 72
    edited January 2012

    Eve - the same thing happened to me after my hysterectomy.  I had about an 8 inch incision and woke up on my belly.  I don't know how I got that way and it took me a while and a lot of pain to flip myself back over.  I never did it with the TEs though.  Towards the end, I would find myself on my side but it wasn't very comfortable when I did wake up that way.  

    DM - I'm sending all my positive thoughts to you.  Praying hard your surgery goes well and you will heal better this time.

  • Kyta
    Kyta Member Posts: 273
    edited January 2012

    DM and Annice - sending you both loads of well wishes….I hope everything works out. Keep us posted.

    Eve - I sleep on my back a bit but mostly my sides….when I awake from sleeping on my side I have a bit of stiffness/soreness on my chest but within minutes I'm fine and it hasn't affected the TE placement at all. 

  • Tatina123
    Tatina123 Member Posts: 312
    edited January 2012

    Dear Annice and DM13,

    I am so sorry to know what both of you are going through.  I wish we all lived closer to one another!

    Please keep us posted on how you are doing, okay?  Sending good thoughts your way.

    As for sleeping, I just started sleeping on my side a couple of weeks ago. I fall asleep on my back (still propped up) and towards the early morning, lean on my side.

    T 

  • theBCavenger
    theBCavenger Member Posts: 172
    edited January 2012

    All this sleeping/back talk is a nice distraction from my anxiety over surgery tomorrow!

    I LONG for the day when I can sleep FLAT and on SIDE! I am so tired of sleeping on my back and propped up! Every morning I have a sore back because of it.

    I was actually thinking that my sleeping instructions were some misguided instructions from my PS! Thank you SpecialK for once again making sense of something I did not understand :)

    I can't wait to make it through surgery tomorrow and post to you all! Thank you for ALL your wonderful thoughts and prayers :) 

  • Lifeafter
    Lifeafter Member Posts: 298
    edited January 2012

    Eve - That makes so much more sense!  I was worried your doctor had graduated from Sally Struther's Schhol of Plastic Surgery, lol!

    I went to my LE appt today.  Another hour of being worked over.  Nice.  She said my right side scar is actually looking better.  I told her how I could feel where she worked where there is a hard bit of scar tissue it's softer.  I'm feeling even now and it is softer from earlier. Yah!  She measured my range of motion.  And wow have I come a long way in a few days.  My right side was around 90 degrees on Thursday.  It's now 160.  My left side is just shy of 180.  I was a little over a 100 on that side.  She gave me a nice little strap the goes into your door jam.  She cut me some rubber straps and I'm to loop them in it to do resistance arm exercises.  I'm used to doing those with my trainer, standing arm rows and bicep curls. She says those really help for lymphedema. She explained it but I couldn't relay it correctly.

    Hope you all are feeling well.

    Michelle

  • chickadee521
    chickadee521 Member Posts: 423
    edited January 2012

    I've been up since 3 thanks to tornado sirens.  All this talk about sleep makes me wish I could have gone back to bed!

  • jblcsw10
    jblcsw10 Member Posts: 60
    edited January 2012

    Dear Ladies,

    I have been absent from TE Troubles (the board, not the reality...) but thought I would catch up and update you on my decision. To recap, I had BMX w/TE 6/2010...months of dealing w/necrosis only to eventualy lose rt TE 8/2011. Since then been in healing mode and 2nd opinion. I had scheduled surgery for Tram flap in May but over the holidays had a change of heart. Instead, on 1/27 I'm having the 2nd TE removed and going "flat". I can always change my mind but the thought of going through all that surgery is more than I can handle right now. I'm feeling great and just want to get on with my life. I'm older than a lot of you (57) too. I feel really good about my decision, even though it took me awhile to get here. My 1st PS wanted to try putting another TE in, with some reinforcing material at the weak spot, but the thought of going through all of that again is too much. It's great to see all the progress and comraderie here - you  all were such a help to me when I first lost my TE. Hope 2012 turns out to be a good and healing year for all. 

  • Tatina123
    Tatina123 Member Posts: 312
    edited January 2012

    Dear JBLCSW10,



    It's good to hear from you and thanks for your update. I understand your decision.....I really do. I remember days before getting my new TE back in and thinking, "Do I really want to go through all this again?"



    It sounds like you are feeling great and settled into your decision. And like you said, you can always change your mind down the road.



    Wishing you the very best on the 27th. Please let us know how you are doing.



    Hugs,

    T

  • Kyta
    Kyta Member Posts: 273
    edited January 2012

    Tornado sirens….Yikes, that sounds scary! 

    DM - all the best tomorrow. Let us know how it goes.

    Hi Jane….nice to hear from you. I'm glad you're at peace with your decision. All the best for 2012 and hope all goes on the 27th. Take care.

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