TE TROUBLE
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Thinking of you Michelle! hope you're resting comfortably today ~
I have been MIA for awhile here. I am one of the lucky ones, my BMX was the end of my treatment but my reconstruction process has been challenging.
On a positive note, I now have a compassionate PS that I respect and like. She's confident she can achieve symmetry. Time will tell. I had both TE replaced after improper placement by my initial PS - head PS at MSK, Dr. Cordeiro - aka DicDoc. Then my left TE collapsed for unknown reasons. My left side now requires one more fill (on the 11th) and then my exchange will be scheduled. Despite my revision surgery, my right side fell back to where it was (sitting on the lower lip of my ribcage). Initially, my PS was going to do nipples during the exchange, now she wants to wait until she does some additional lypo/fat grafting - which tells me, she has doubts I'll be symetrical after the initial exchange. Maybe I'm wrong. I don't know.
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First of all, I would say a round of applause for Lisa96! I too thought all the dr would do is chop off my boobs and i could go on my merry way with implants but then I found out she doesnt like the Harmony knife and as she said "I dont use an axe." She and the PS were excellent and put the incisions at the bottom almost like the cosmetic implant surgs. If I can get a little natural droop going,the incisions will be almost unseen. However, they never said one word about any possibility of anything going wrong. Oh nooo...I had to find out on my own and then you have to find your own bra size and research your own info on implants and then to my furiousness..the stupid hospital made me the patient drive all over town interviewing to find my own PS!!! I tried to switch to the indigent patient hospital at the last minute since they have a PS on staff but they wouldnt take me cause I have insurance.
Thx Rennaeus for adding my implant exchange date. I was fortunate I used Collodial Silver ointment and rubber gloves which I washed with peroxide and then soap&water,I was a fanatic on the sterilization and I had no problems with the TE other than pain.
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OMG, Tatiana, you are a San Diego chick...thats where my fiance wants to take me in Oct for my birthday and then its down to Baja to see some cousins of his. I have been to Cali b4 but left my heart in San Fran. Love that place and San Jose. Then we went to Delano to get MX food. He bought a campground from a church that needed the money and its in the mts by Paso Robles which is wine country now. We got a whole case of fabulous wine last time in Gilroy so hope to get some wine to ship back to FL. FL has muscadine grape wine and I dont like it...nope my tongue is high class..lol, champagne on a beer budget.
good luck everyone and have a safe & happy 4th.
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You will really like San Diego, Layla. So much to see........Coronado Island is a great place to stay and is a ferry boat ride (or drive over the bridge) into downtown San Diego. And then again, downtown San Diego is really nice to stay near Seaport Village.
You know, Layla and Lisa, you made me think about the women who do need to fend for themselves regarding bra finds and all the rest. At the hospital I went to, SCRIPPS Memorial Hospital La Jolla, the Polster Breast Care Center guided women pre and post surgery, teamed you up with breast buddies, helped with bras on where to go, and someone to talk to during the hard times. Although I did have my breast buddy early on (a lady who had been through a BMX and reconstruction) to tell you the truth, I sort of forgot the center was there to help along the way.
It makes me wonder how many breast centers are out there to help women.....
GM - so great to hear from you! Your pic always makes me smile and your creativity like, "DicDoc." For me, I had to wait a minimum of 3 months before I take my nips vacation to NOLA.
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Happy 4th! Quick question, I have a lump in my TE! LOL, I think its an air bubble, but I think that means I have a leak. I will have to see the PS soon. I was gonna call tomorrow to see about replacing my left TE. May he will have to replace them both. Oh well. I'll know more tomorrow. Much love to you all.
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Moonflwr - I have have a small lump in the front of my TE. The first time I saw it (it's very visible) I freaked out. Then I pushed on it, and it was like one of those weak places in a tire that's about to blow....like a blister.
But the PS said it was completely normal, that it was like a ripple, that the shell of the TE was not completely smooth under the skin, and that there was nothing I needed to do. In fact, he said I probably had more of them but just hadn't noticed them yet.
SO hoping you get good news at the PS appt tomorrow!
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Well don't have an appt yet, but ill call and see about it. I have labs and a nurse tomorrow anyway so ill be out and about.
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I have been MIA for a week or so and just spent the last half hour getting caught up! Man - loads of newcomers...
sorry you all had to join us.I wanted to comment on a post on the last page - I have a friend that was diagnosed a month after me. She had a BMX with TE and 6 rounds of chemo. SHe has already had her exchange and has been able to move on with her life. It really does happen like that for some people, and I am green with envy!
I am going in for my second fill in new TE tmorrow morning. I have been massaging lotion every day and hope my skin will stretch.
I wish my scars would have been placed below or under... mine go straight across the front and I wonder if the scar will ever fade once I am done.
Have been working with my PT every week for frozen shoulder and LE - very happy with the results. Also today while doing my walk with dog I ran/jog a little bit. Wow, I really did that! BCAvenger would be proud!
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Thanks Renn... YOU are awesome. You check in with everyone and make us all feel welcome here. You rock!
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Going to get my last fill (I hope) later today. Maybe I'll get a surgery date as well. That would be nice.
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DM13, your scars will fade in time. I have a big jagged scar from armpit to armpit from my BMX & then I have lat flap scars on top of that. I don't let it dictate what I can wear, though. (Scars were unavoidable due to the size & location of the lump.) Good luck with your fill!
Great progress, dunesleeper! Congrats on being almost done.
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My plastic surgeon has been completely honest with me on expectations, etc. but, I did a lot of reading and research in advance and had lots of questions, all of which he answered thoroughly.
Yes, I ended up with an antibiotic resistant infection, probably frm bmx surgery, and yes, my expanders had to be removed, but the infection I had is a risk in any surgery. Through it all, my PS was very attentive.
The second try ran perfectly. He followed my wishes to be smaller, and is doing everything to make them look as natural as possible.
He was the first to tell me his tatooing skills were not his forte, but I used in anyway. They look pretty good. They will need some touch up, which I haven't decided if I will have him do, or hold out for Vinnie.
I would never wish to have my leg removed over a bmx. I was able to hide and disguise any
problems. That is much harder with legs or arms.
DM, it has been 16 months since my bmx, and subsequent surgeries where the PS used the outer scar to reopen and remove and insert implants and expanders. The area that hasn't been touched is really starting to fade and I think will not be very noticeable in another year.
I hacked myself with a knife across the top of my hand. Took 19 stitches to close it, and while it has healed well and the scar looks good, it is still visible all the time. I hate it worse than my bmx scars, as I thought I had pretty hands before that.0 -
Thanks for that post Fluffqueen. It's encouraging to hear that things went smoothly the 2nd time around! . . . I'm waiting for a call back from my ps as I type. I'd say my infection is pretty antibiotic resistant too after 7 weeks of meds and no progress. I think I need to move on at this point.
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binc - have they cultured the infection for you to know that they are using an appropriate antibiotic?
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Yes- they cultured it during my 1st hospitalization and nothing grew. They started me on zyvox for the 1st 10 days and then it got worse. So when I went back in the hospital, they put a picc line in and I've been on vancomycin ever since. It hasn't gotten worse on vanco but really isn't much better either. Those are 2 of the most potent antibiotics out there, so I'm not sure what's left to try.
I just spoke with my ps's office. The next available surgery date isn't until the 17th, so I've got 12 more days of this - unless things get worse, then they'll bump it up. At that point it will be a full 2 months of having the infection. That can't be healthy!0 -
Special k r u a nurse?You sure know a lot
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Binc, my culture did not grow anything either. At that point, I was on Keflex for 3 days so they assumed it worked. I feel like maybe I didn't have an infection to begin with?
I took Keflex for 2 weeks and stopped a day ago. The swelling and redness is mostly gone, but I'm still draining. Not sure I even needed it since the draining solved the other problems as soon as it happened. My PS is reluctant to do IV antibiotics because he said they rarely do anything for TE infections.
I'm seeing him Wednesday to see what to do next.
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orange - I am not a nurse, but did work in Transfusion Services for a number of years in the hospital where I had BMX/TE put-back/exchange surgeries, thus lots of experience with traumas, surgery, cardiac surgery, patients who have required transfusion for myriad reasons, etc. Also, FIL and BIL are physicians, MIL and 2 SILs are nurses, other BIL is a veterinarian. My personality leads me to gather a lot of info - I am a "knowledge is power" person, lol! You can see by my signature line that my direct experience with having BC has been complicated, from a TE/surgical perspective, so I have asked a lot of questions along the way.
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Thats great to have a source. I am an attroney so I look to u . Thank u so much for your insight
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orange - you are most welcome!
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Thank u uuuu but no law questions lol. We are all strong women..... Cancer will not beat us we will beat the disease... Stay strong through everything.
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Roadwarrior, IV antibiotics cleared my infection. It's the orals that made me very sick. I refuse to take them after my exchange surgery.
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Moonflwr,hope you got a hold of the PS today. Its probably nothing but as soon as the PS gets a look I am sure you will feel better when the dr knows if any need for worry. If I call my PS they have me come right over to see if it all ok.
Tatiana, thx for the info,hope we get to see some of it as "he" wants to wisk me off to Old MX in Baja. Good grief. MX seems pretty in some areas but we only get out in Cancun,we dont do too much in Baja cause "he" doesnt feel its safe.
Blessings,you are so right,did you get to see the TE in the office b4 you got them? The ones I gots are not smooth, at least the one they showed me was not smooth but had little nubs all over it about a quarter of an inch high,like some sort of hair brush that went wrong. There are different kinds of TE however that I have heard about. Mine has a little bump or puckering in one spot on the scar so hope they get rid of that in the exchange,we'll see.
Hope the infection clears for ya..
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Binc, on first culture nothing grew either, but I had a big red spot, no pain, a very low grade fever for a couple hours every few days that I chalked up to chemo se's. He was frustrated, so he had them do some kind of special culture, or at least something outside the norm. That showed pseudomonas. Moderate on one side, mild on other. He freaked as they have to report that to the infectious disease person for the hospital. It is usually contracted in surgery, but can also be through raw fruits and veggies, and a couple other way. All I could think of is the raw veggie/juice smoothies I was drinking everyday. Wondered if I gave it to myself.
We tried iv antibiotics, but as soon as I would go off of them, it would start back. This was over a 6 week or so time period. Finally, I was fully expanded, so I went into surgery either to get the implants, or if the infection looked too bad to remove the expanders, the latter of which we expected to happen. He said he thought he would see a mess with alloderm floating around, etc, but the alloderm looked perfect. He took about five minutes to wrestle with his thought on the infection and finally decided to err on the side of safety. Out they came.
Both he and my onc said I should have been way sicker and they couldn't believe I wasn't spiking a fever and in pain, with good blood counts. After they were out for a few days, I did feel waaaay better, so I think some of what I thought was chemo related might have been the infection.
While it took a lot longer than I intended, and I am not a patient person, liking to be in control, it was probably the first time I ever took a year just to myself.
I do think I couldn't fight it off due to the chemo's effects on my immune system, even though my counts were normal. I had been done with chemo for two months when we started again, and with the exception of some weird horrendously itch rash for a few days, there were no problems.0 -
DM - my scars are across the front with the BXM and the implants are at the "breast crease" underneath. My scars are very faint. The nips will make them even more so.....
Let us know how your fill goes!0 -
Hi girls , this is the thread I follow that posts the most , I have a question . the PS did my last fill on June 26th . he filled me so much that I was crying in pain and needed to call him back and he had to call me in pain meds again . I am still so uncomfortable waiting or my exchange . does anyone have TE's that are under there arms . Mine feel like tennis balls under my arms , I cannot put my arms close to my body . I feel tight and cannot lay on my sides . I dont know if it is because I am 5 foot and 98 lbs that the TE is under my arms ..I dont know if this is normal . anyway thanks for listening . I also have flexaril but it does not seem to help at all . during the day when I work I seem to do alright once i loosen up but I hate bedtime and hate waking stiff every morning . I am hoping the exchange will bring me some relief .
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Lisa, sorry, can't help you. I just made an appointment with my PS to get a replacement TE, as my left one has been out for six months while I went through chemo. I am still on Herceptin but I think they can do it. I will see him next Thursday
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lisamarie - I wonder if your PS used TE that were too wide. Mine were quite large prior to exchange and did feel like they were under my arm somewhat. Not so with the implants - they are where they belong and much softer - you will feel the difference immediately.
moon - I had my TE put back in while on Herceptin only, about six weeks after finishing chemo. It shouldn't be a problem for you. I scheduled it so I had just gotten the H, that way I didn't have to go back for the next one for 3 weeks. My PS is very restrictive on driving after surgery.
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Thanks again Fluffqueen - sorry to hear your TE infection lasted as long as mine. I have no idea what caused it. I was fine and feeling great for the 1st 3 weeks after surgery. I have to wonder if I was overfilled after the initial surgical fill. I received 120cc's on the right side and only 60ccs on the left ( to balance it out). I was really uncomfortable on the right side from the minute i was filled - one week later it was infected. I also took a kickboxing class 2 days before the infection started - lots of heavy bag punching which felt awesome! Then I was sick as a dog. I've been wondering if that contributed too. I hope not - I'd really like to get back to that once all this surgery is behind me. I guess I'll never know for sure what caused all of this. I'm sure they'll do another culture once the TE is out to see what exactly it was/is.
Lisamarie- after that 120cc fill I mentioned above, I felt like my TE was a bit in my armpit too. Maybe you were filled a little too much for your small frame?
Roadwarrior- I see my ps Wednesday too, although I'm already tentatively scheduled for surgery on the 17th. Maybe your drainage will subside by then. It has to be better for all that stuff to come out rather than being trapped inside like mine is!0 -
Well I couldn't stand the pain do went to see my PS today and he said lets get it out. And at this point I'm ready to cut it out myself... Sitting here waiting for surgery
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