TE TROUBLE
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Ren - glad the scary sounding 'epidermal inclusion cyst' is nothing but a pimple…..lol…seriously, why don't they just use laymen's language so we don't freak out.
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ren - sounds like you got great info on a number of fronts - isn't it nice when our questions get answered? So kids don't get "teenage acne" they get "pubescent epidermal inclusion cysts"?
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Saw my PS today and he said I'm ok, this is all part of the healing. My TE reinsertion is scheduled for October 27th. He gave me a breakdown on the scar tissue and it's in line with what I researched last night. He said he will cut some of the scar tissue out during the next surgery so the skin will be able to stretch. Once it does the scar tissue will start to breakup. I also started massaging it last night!
In my reading I came across the use of castor oil for scar tissue. Apparently it has many more uses like for thinning hair and hair regrowth. I'm definitely going to be trying that! Has any one tried castor oil for any of those uses or heard of it for that?
Michelle0 -
mrochon - glad to hear all is ok. Had not heard about the castor oil, or its apparently many uses! I may need to put some on my head if it regrows hair!!!
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Here is a site I found. Everything on here I've confirmed on numerous other sites: http://www.calamba.ph/more-stories/185-health-watch-the-many-health-benefits-of-castor-oil
I went to Target tonight but they didn't have any. Will try Walgreens and Rite Aid tomorrow!
Michelle0 -
I read Olive Oil also helps with hair regrowth. Haven't tried smearing any on my head though.
Excited to hear my surgery may only be an hour tomorrow!! That might really help with the side effects.
Special K....my nerve damage was to my right (dominant) arm. I didn't realize how dominant it was.
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Chickadee: thinking of you today - hope the surgery goes well.
Renn: thanks for the helpful info on scar tissue and healing...it helps me understand why my skin failed so long after surgery. it was just stretched too thin and too compromised.
Special K: Soler was expanding me past the capacity - so he does do that. He also told me we would wait a month after last fill to exchange. Having said that, I wish I had told him to stop before we got to this point, I intuitively felt my breast had taken all it could take but let him do a few more fills after that point. I should have listened to my gut. Oh well - shoulda coulda woulda. I have told myself NO looking back - I'm just moving forward from this point on. I am feeling really good since having the TE removed Monday, altho I don't know how you did a Christmas dinner this soon after your surgery!
I am learning a lot from all of you. Massaging, PT (no ones ever mentioned that to me but I have a lot of trouble/pain with my right arm too), oils, prosthetics, etc. Yesterday I spent some time researching/looking at prosthetics at tlc and got totally overwhelmed. Little pieces of info at a time I guess. Today I need to take my first post surgery shower which means I will need to remove the bandages and see my chest minus TE for the first time. I keep putting it off because I'm scared. Deep breath......Thanks again for the support of this thread.
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jblcsw10 - just want to warn you about the first look without the TE - mine looked like a raisin. It may be even more pronounced for you because you were more expanded than I was. You will get used to seeing it faster than you think, it will be ok, don't worry. You all may think this is weird - I never let my husband see it. We are exceptionally close - he bathed me after the other surgeries, cleared my drains, etc. I knew the loss of the TE was going to be temporary and once he saw that side he couldn't "unsee" it, so I just didn't give him the option. He tried to tell me that it didn't matter, but it mattered to me. He understood but I think he didn't want me to be afraid to let him see it. The whole point of NSS BMX was to try to look as normal as possible - I didn't want to negate that. As I type this I sound shallow to myself, but I just felt strongly about it.
Also, I was aware of the overfilling. Pretty standard, most PS do it. I will stop at whatever point I think is enough, even if I don't reach max capacity of the TE. I am not willing to risk more problems. PT is the bomb diggety - I went yesterday. Gentle stretching and massage - I love it. It really does improve range of motion in the shoulders and I don't think I realized how tight mine were until I started to try to stretch them out.
Also, on the prosthetic front - Nordstrom lingerie department has trained fitters. They sell prosthetics and will set up the insurance billing for you. They will sew a prosthetic pocket in any bra they sell for free, also possibly in bathing suits (I just found a cheapie one-piece bathing suit at Marshall's that had the removable pads in the cup). I also have a link to a demo for how to sew a bra pocket with a piece of t-shirt fabric if you have your own sewing machine. Let me know if anyone wants it.
jblcsw10 - there is also a store in Largo that has mastectomy bras and prosthetics that is very good. Someone I know from here in Tampa that is temporarily without an implant on one side went there and said it was great.
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SpecialK - To me you seem anything but shallow.....
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Thinking of you chickadee! Goodluck!
jblcsw10 - You'll be ok. It was disappointing when I had my TE removed and I was apprehensive about looking at it. When it comes down to it, it wasn't anything compared to looking at what was underneath the bandages after my double mastectomy. No new scars, in fact my PS was able to make it smaller.
I don't know if I mentioned on this thread that I have no problem flashing anyone who wants to see. For me it takes the stigma away and I'm able to look at it as any other inatimate object. In fact I just came from my bosses office, she's been out on maternity leave. Closed the blinds and door and lifted my dress!
Also, do you have a project manager associated with your insurance group? I had one. I wasn't aware they had them. She called me. She got me set up with the prosthetic suppliers in my area. I made an appointment and the supplier took care of everything for the insurance. I went through Hanger. They will measure you and fit you for bras and prosthetic. I also was fitted for compression sleeves to use when I work out. But I don't like them so I don't wear them. They seem to cause the problem I'm trying to prevent!
I'm still on my castor oil search. I tweeted Dr Oz about it and am hoping I get a response!
Michelle
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chickadee - Awww, so sweet of you to say that. At the time I felt like I was shutting him out, I think his feelings might have been hurt, but I was really trying to protect him. I think he figured it out after we spoke about it a couple of times. I am glad it is behind us though.
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So Renn- sounds like you are still a candidate for TE then implant? Any timeline?
All - I saw the new PS today who confirmed that I am no longer a TE then implant candidate. I took my friend who was diagnosed 3 weeks before me with me and we both like this PS a LOT. Very straight forward and forth coming... loved loved loved his PA. And he is a year older than I am (I am 51) -- the current PS was born in 1975 -- nothing wrong with that but he is still a bit of a baby. and the new PS has a young partner who assists with the surgical team during the operation.
I have another appt with another new PS on the 20th that I will keep - and then compare. I think I am ready to move on from my current PS (breaking up is so hard to do - tra la la!)
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justv - so glad you had a good experience with the first of 2nd opinions! I am also glad it is helping solidify your feelings about your original doc. Sometimes it all comes down to style points!
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Justv- good for you for seeking out a second opinion/new PS. I know its important we take charge but I am not always so good at being assertive with doctors.
Special K - I agree you are NOT shallow. I have been feeling like I don't want anyone to see what this looks like right now. I am afraid to look myself! Just got back from buying some bandages/tape so now I am ready to do it - maybe in a few days...I did take that shower today but managed to cover the bandages and keep them dry so I didn't have to remove them. Big chicken.
To top off this bad week, my almost 12 y.o. wheaten terrier died last night. Ugh. I have been crying on and off all day and I suspect I had a lot of pent up feelings from losing the TE as well that finally came out, all tumbled up with my grief over Scooter. He was a good dog. He died quietly and peacefully in his bed at home last night.
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Chickadee - hope all went well with your surgery.
Michelle - your post about flashing anyone who wants to see them made me laugh. I'm kinda the same now. After almost 2 years of showing medical folks my chest, it no longer bothers me in the least. Last week after my fill, I came home and lifted my top to my daughter and husband….my daughter was not impressed, said she felt uncomfortable. I said well they're not even boobs exactly, just some skin stretched over expanders….expect more flashing honey. Re oil….haven't heard of castor oil. My PS suggested Bio-oil which I've been using everyday. Castor oil, if it works, is probably much cheaper. Congrats on getting your surgery date!
Jane - Post surgery sucks. I was glad the TE was removed because I didn't have any more pain, but looking at my chest was a definite reminder that this was a set-back. Keep telling yourself that this is a temporary and you will prevail!! Eventually this will be a distant memory. So sorry to hear about your dog. On top of the TE problems, you didn't need this. Can understand the tears. Take care.
Mich
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jane - so sorry about your pooch.. i do not even think about it with mine because i simply cannot. they are totally part of the family and such wonderful friends. my heart to you, girl..
mich - i know - it's like doctors take the place of our parents or something... may be the fact that we are so often in compromising positions with them. this PS had me in two small black triangles of material with straps that was supposed to be 'photo' underware and my shoes, for pre-op pictures. oh. my. gosh. then he said he knows it is uncomfortable to be half naked, to which i replied - 'half naked - this is like 90% naked - maybe if i were a kardashian i'd be half naked'. hard to get the upperhand after that.....LOL
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oh - and this new PS - all he does is reconstruction on breasts - his whole damn practice. his office is in the hospital building.. gotta say, that was nice to hear that he is so into making us whole. he even talked with me about whether to MX the other breast, then gave me a card for a geneticist to get tested for BRAC gene - told me i needed to do it since my mom had BC and for four reasons - my ovaries, my daughter, my other breast, and my three sisters. Gotta say, my current PS is very tactiturn; this one is free with information - love it.
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justv - nice!!! This PS sounds fab! I have to say I did get a mental picture of the underwear and shoes deal - I started laughing - not at you but with you! I read something funny on the "you know you're a BC patient when..." and it stuck with me. You know you're a BC patient when you go to the dentist and get in the chair and unbutton your shirt. I did have BRCA testing on the day I was diagnosed, thankfully I was negative. I am adopted so they wanted know because I have no access to family history.
jblcsw10 - look under those bandages when you are ready. I am so sorry about your doggy. I had a 17 year-old cat that we had to put down 18 months ago - loved that cat like another child. Awful to lose him - I know exactly how you are feeling.
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jblcsw10 - I'm so sorry about Scooter.
I have been through some awful stuff with my pup the past few months too. It's the absolute worst next to your own offspring being in dire straits. I've experienced both. I hope it offers some comfort that he was able to pass in his own bed at home where he was obviously loved. Let those tears out. Big big hugs to you.Michelle
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Oh I know how hard it is to look! I went through that in July. It took me several days. When I was cleared to finally take a shower, I jumped in without looking in the morrir. I finally got a gander once I was all clean and more relaxed. Since I had TEs filled to 350ccs after BMX, I'd never had to deal with seeing myself flat. So I was scared. Was it easy to look? No. Does it get better? Definitely. I remember saying to myself, Well, this is how I used to look when I was 12! That made it easier.
Did I show my DH right away? No. He was scared also. I kept myself discreetly covered. Like SpecialK, I didn't want him to have that image in his heqad. But ya know what? A couple weeks after my TE was removed, one day he asked how the incision was healing and asked to look at it. And so I showed it to him and he was fine. (That's not to say I flaunt it; I still wear my robe more than I am used to.) But I'm not longer worried about his (or my) reaction.
It is something many of us have to deal with at some point. But like everything else on this journey, it does get better!
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OK, I just went to lunch with my sweet neighbor, got my mail out of the mailbox, saw a letter from UCH Breast Health so I opened it. I am still trying to calm down. The letter referenced an MRI I had last year on Spet. 30. It said I needed to schedule a follow up mammogram, early detection requires self-exam, mammography, yearly breast exams, blah, blah, blah - for crying out loud - I had a double mastectomy in this hospital!!! And yes, you bet I called them! I told them the deal and said I didn't want any other woman who has already been diagnosed and had a mastectomy to get one of these letters - whatever is broken in your communication and documentation system you need to fix it right now!!! I am trying to breathe deeply and not drive down there and rip somebody a new one!
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Oh my Specialk _ That is really horrible. I did get a letter from the place I had my MRI, same kind of form letter, but I didn't have my surgery there so I don't expect them to know what happened...yet I still found that letter upsetting. So I can appreciate how you're feeling now.
thank you all for the support regarding my dog. I feel better today but sad, of course. Trying to keep busy. Thanks also for acknowledging the difficulty of "the unbandaging". I'm not sure anyone else can understand. Tomorrow I plan on rebandaging after my shower, I can do this!
Have a nice weekend everyone.
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Well girls, I too got a letter asking me to set up a mammogram (at the hospital where my PS is not where I had the BMX). They offered me a free lunch at St. Louis Bread Co (Panera to anyone not from STL). I guess all these mailings are due to it being Breast Cancer Awareness Month in Oct? I want my free lunch
Jane- So sorry to hear about your dog. They are hard to lose.
My surgery went well today. Only slight nausea right after wards. Waiting a few more hours to pop a sleeping pill. My mom was here to get the kids to school and home (1/2 day) and I think they did OK. SpecialK you were right, short surgery. I am pretty bruised up, but no drain so I am happy. I hated those drains. He got me to about 240cc so almost 1/2 the size of the other one. It better cool of here pretty quick so I can start wearing baggy shirts or sweatshirts again.
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chickadee - I had the spectacularly bad luck to be diagnosed 3 days before pinktober. My letter was because I had the last MRI on Sept 30th, 2010. It was interesting because they were referencing me specifically in this letter. They had my last MRI date in it - indicated I needed a mammogram done on my left breast - as if they were aware of the cancer on the right (they did the US guided biopsy and received my diagnosis) which I found presumptious, like they assumed I had a lumpectomy. On the phone they claimed it was the BS office bad - they never got back to them to say I had a BMX. I def humbled the person on the phone - I hate doing that but I fear for the next person who gets one of these letters who is very emotional about it - that is not right! YAY on the surgery - glad it was quick and they got a decent surgical fill. No drain is a bonus! And go get a free lunch - I think we have been diligent enough on the screening diagnostics!
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SpecialK-do you remember being pretty bruised afterwards?
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chickadee - only some slight bruising with this last replacement. I was pleasantly surprised by the lack of bruising and/or trauma to the area, even on the incision line. I do have a little on the corner parts of the new TE because I am so underfilled. Of course, I was quite bruised after the BMX so by comparison this was cake.
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Chickadee- glad the surgery went well and you're back on track to putting all this behind you. Also I can really relate to the clothing issue, yesterday I tried on a bunch of shirts and nothing really hides the difference between my two sides - my lt breast is fully expanded at about 650cc. I made it this far using ruffles and baggy shirts but now i'm going to break down and get some inserts/prosthetics.
I finally took the bandage off today, ugh. The gauze stuck and when I pulled on it the incision started bledding so maybe I took the bandage off too soon. Anyways, I rebandaged it and will recheck tomorrow to make sure it isn't continuing to bleed. today I am really feeling down, like I have taken a huge step backwards. It's been 14 months since my original BMX! And now I have a big hole on my rt side. I am glad I had read through this thread and "talked" to all of you 'cause it helped prepare me for what to expect.
Also, thanks to all of you I'm trying to eat more protein. Its tough to get in 100g! I am drinking 2 protein drinks per day which adds about 30-40g. I've cut back on carbs because of the extra calories I'm taking in. Wierd thing - I've lost my appetite. I really have to force myself to eat now. Maybe there is something to those low carb/high protein diets.
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jblcsw10 - Hi! Glad you got past the looking part - I know that was hard. I think especially so because of your fully expanded other side. The disguising will be hard and I do think you will need go the prosthetic route. I will go with you anywhere you want to go shopping for those items if you would like me to. Just say the word - I will come pick you up, or meet you anywhere.
There are some bars that I got at Sam's, GNC has them, and I think Publix has them - called Detour Protein bars. They taste pretty good for a protein bar - kind of like a Snicker's bar. They come in 30g and 15g. I always lost my taste for carbs and experienced decreased appetite when I did the South Beach Diet.
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Jane - I know you feel like you've been going through this forever, but you'll get through this. I started my journey in Nov 2009. Feels like forever-ago, but I know it won't last forever…not easy though. Good luck with your healing and the clothing issue…I know it's a pain in the ass.
Mich
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I am happy to say, no foreign objects left in my body! I didn't have much time to dwell on what to do...made a last minute decision to have both TEs removed. Came home today and is sooo sore, but those Percosets are pretty awesome...Hoping to heal physically and emotionally this time, maybe 3rd time's a charm. Does anyone have a Facebook? I live on there...add me! Maria Petersson Santarone
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