TE TROUBLE
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I wish all those with complications the best.
With all that has happened I am grateful the infection was localized and that my PS did not want to take any chances with keeping the TE and Alloderm. I am healing well, and am building myself up for future reconstruction. My PS assures me he will make it right for me, he just does not want to gamble with me anymore, he wants to be careful and make sure I am healed before doing anything else. I have bought a couple mastectomy bras, so I can insert soft forms, so I don't look so deformed for the duration.
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raven - glad to hear you are in the home stretch - hoping for a complication free exchange for you! I am doing ok, happy to have had my final recon surgery last Nov., have spent this year catching up on routine health stuff and exploring lymphedema surgery - lymphatic bypass. Not sold on it yet though. I just had a surgery this morning to remove an infiltrating basal cell cancer form my shoulder, good clean margins, but a 4" scar - I look like a road map at this point, lol!
bravenurse - hoping the time until you can proceed goes by quickly, I know this is difficult.
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SpecialK, I have never heard of surgery for lymphedema! I just started OT for LE a couple of weeks ago. Had a demo today on a pump; that was interesting. Sorry about your basal cell surgery, but glad they caught it! Good heavens, girl, you need a break!
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https://community.breastcancer.org/forum/64/topics/818062?page=12#post_4924062
Raven - there are a couple of types of sujrgery - lymph node transfer - which is fairly self-explanatory , and bypass, which connects the lymphatic channels to the vascular system to help move the fluid out of the appendage. Here is a thread devoted to this, and it supposedly works best when you are early in the LE situation, linked above because I'm typing on my phone and I can't get the link to go where I want, lol!
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Thanks SpecialK for insights on what it could be. My PS doesn't seem to be concerned with what I felt so I guess it is OK.
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I am so struggling with my tissue expander. I have on both sides, however, the one on the right I think will kill me. I would almost swear i have a broken rib... hurts to breathe deeply, move in almost any direction. The muscle relaxers don't help much.... it's "stuck" on that side (presumably due to radiation I had) and I still have a long way to go. Every fill makes my right arm ache like nobody's business for about 48 hours.... again, meds aren't helping. Anyone have this happen to them? This is not good at all....
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I do not even believe this. I went in for my LAST fill yesterday - and they punctured the TE. All of the saline is now leaking out of it. I soaked through a feminine napkin last night and at this rate I estimate I'll be completely flat again by tomorrow, that's how fast it's leaking.
Un - freaking - believable.
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Oh no... that sounds like a nightmare!!!! I'm so sorry. This has been such an aweful experience I feel your pain!
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raven - I have no words... When is your exchange scheduled for?
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Oh, Raven, hoping the PS has some solution to offer. Thinking of you!
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SpecialK, yesterday was supposed to be the last fill then we were going to wait 3 weeks and schedule exchange. So I'm really close to the end, anyhow.
Thanks EastcoastTS and Jennyann!
My initial panic has subsided - the external leaking has now stopped and while the breast is noticeably smaller I don't think it's going to go completely flat now. After sending a couple of pissy e-mails to the PS's office this morning and then putting in a call the PS called back said as long as there's no external leak he would prefer to try to refill me with a smaller gauge needle to see what happens. If it starts to leak again then we'll move forward with the exchange since I'm already completely filled. He said even if the TE is still leaking the breast is still filled with fluid, it's just under the skin instead of in the TE. Made appointment to go back on Thursday for the smaller gauge refill. Looks like exchange will be sooner than I expected and I'm perfectly fine with that.
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raven - sounds like a solid plan, hang in there.
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Hi ladies:
Raven ... I am so sorry for all the trouble you have had. I sure hope the leak will not jeopardize anything for you.
I have a question. I had TE put in my right side 4 weeks ago. So now I have a TE on my left side from March mastectomy/TE placement and a TE on my right side from mastectomy from 13 years ago. The right side has been radiated. Anyways, two weeks after surgery (so two weeks ago) I had my followup with my surgeon and 30 cc put in my left side TE and 60 cc put in my right side TE. I had no issues. No pain, no tightness. I am getting my next fill August 8th. (They are going slow to accomodate the irradiated side) Anyways, for the last couple of days, I have noticed that my left side has started to feel tight and it is aching under the armpit. If I feel under my armpit, there is a sore, tender lump right next to the edge of the TE and if I press on it I can feel the fluid in the TE move there. My whole armpit is aching, but I think the pain is originating from this lumpy spot.
Since my surgery, I have been sleeping in a recliner because I was advised not to sleep on my side or front and to sleep semi sitting up. I do tend to roll to my left side and sleep on my side still in the chair. I am wondering if this has aggravated the TE on my left side. I don't have any pain when I sleep on my side. I just wake up in that position.
Of course, I am also tending to think bad thoughts like recurrance already. Is the lump a lymph node?
Anyone else experience this aching and lumpiness with a TE and if so, what happened?
wallan
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wallan, sorry I can't help with that because I haven't experienced but someone on another board was concerned about a new lump in the same area and someone else mentioned possible fat necrosis. Not sure that would cause pain, though. When is your next appointment with PS? Might be worth a phone call in just to ask if you're not going back for a while.
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Hi Raven:
Thanks. I did go to my PS. I called and she asked me to come right in. Turns out the lump is part of the TE and she thinks the TE has broken thru the thin layer of muscle under my arm. She said that there is no pectoral muscle under the arm and during surgery she put another muscle over the TE that was not very thick. That is why she can feel the TE edge so well and why I can too. She did put in 30 cc and the lump has disappeared. It is still sore though. She said it is not a big issue and as I get more filled it will resolve.
Thanks again and I hope she is right.
wallan
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I'm glad you went in right away and got an answer, wallan. Good luck with the rest of your fills!
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SpecialK - I have read many of your posts and am so thankful you are still on the boards to help us newbies with your vast experience. I had a BMX on June 23rd with TE placement (under the mussel) where like you I developed skin necrosis more on the cancer side than the prophylactic side. I also developed a staph infection that they believe was caused by the skin necrosis. The infection cleared up with IV antibiotics and the PS wanted to cut out the necrosis so that was done on July 25th. At that time she took out some of the saline that was placed in the TE at original surgery. On Aug 7th the wound split open and she restitched in the office. On the 15th it again had split open she drained all of the saline out restitched and gave me a 50% chance that the TE would have to come out. Said if it split open again she would remove it. Will yesterday it started opening again, so tomorrow I will be having the TE removed. The decision I now have to make is if she removes both TE's and I start all over in 3-6 months or go ahead and leave the one in. She says that we would go ahead and fill until I thought it was filled enough (how can you tell with only one side) then wait for the other to heal, replace, & fill before the exchange. But that either decision was acceptable. Any thoughts (pro/con) you have on this? I am fortunate that I will not be having chemo or radiation so neither is a factor in the decision.
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CB - sounds very familiar, and I am sorry you are having this experience. I would personally not expand the remaining TE any more than it is already. My rationale for that is that the more imbalance that is created will pull on your recent surgery side, and you will have to compensate with an ever larger prosthetic to make yourself even if your one TE keeps getting larger while the other side is flat. I would leave the whole thing alone as it is until you are able to get the new TE implanted. I would wait until you are sufficiently healed and then add saline only to the new TE until you are even with your other side, then expand bi-laterally until the desired size is reached. Filling now increases the total number of doctor visits, and I think it also provides an avenue for infection every time you are filled - more prudent to wait.
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SpecialK thanks for the quick response! I think the PS is worried about scar tissue forming on the TE that would be left in. That is why she says TE's need to be filled a minimum of once a month. Once you are at the size you want to be then the scar tissue is no longer an issue. Did I understand that correctly?
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This was never mentioned to me and my initial TE was out for 7 months, remaining TE stayed in without anything other than the surgical fill for that duration. What size (total fill volume) is your TE, and what volume do you currently have
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The size of my TE's are 550cc's They were filled to 300cc's at surgery and I had one fill on the left side of 50cc's.
I thought the skin necrosis was due to no blood flow after the breast tissue was removed but have read where you have mentioned it could be caused due to the tissue expanders. I have decided to leave the left one alone and not remove both and start over. I would hate hate hate hate to develop necrosis on the left side next time around. What can I expect when the TE is removed? Drian's again? What was your recovery time with just a TE removal?
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I also had 550cc expanders at the time of BMX, with 200ccs of surgical fill. My necrosis started pretty quickly, so I did not have any fills. After the expander was removed it wasfairly easy to camouflage the flat side and match it to the partially filled side since it wasn't that large. There are a number of reasons for skin necrosis, but one is too much pressure on the skin inhibiting the formation of a new blood supply between pectoral muscle and skin after the removal of the breast tissue. One thing I would encourage is to wait for a period of healing after the expander is replaced, and to fill very slowly to be gentle to the skin. I have not had drains after the loss of either a TE or an implant, it was an easy surgery for me, and a fairly quick recovery. I did start chemo shortly after the expander was removed so my experience would likely be different from yours to some extent.
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Hello:) I had my expanders placed just over 6 weeks ago and then started Radiation 3 weeks later. I have been feeling great and the expanders were as comfortable as they could be. As of this past Sunday I started having pain again as well as fever, couldn't see any redness because I was very discolored from 3 weeks of radiation. My RO stopped treatment Monday until this resolved, suspecting it's an infection. I saw my PS the next day, I'll just say he's not the most sympathetic person I've ever met, and he just kept shrugging his shoulders and saying "well we knew this could happen" which I did of course. I am more interested in the "what now". He put me on a strong antibiotic and wants to see me back today, but as soon as I got home from that appt the hospital called to preregister me for removal surgery tomorrow! So maybe he knew it was a lost cause, maybe he scheduled it as a precaution and to just get me on the schedule in case it got worse, but mostly I'm thinking that since he only has to days a month of privilege at the he hospital he really doesn't have a choice. So basically I have to hope 2 days on an antibiotic has made a difference. I asked him if going in the hospital for IV antibiotics was an option and he said no and he he didn't say why. I don't know what to do, I know I don't want to die of an infection but I also want to try everything possible to keep the expander. My PS is very hard to communicate with, he's very defensive. Also, if it does have to come out should I remove both??
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I can only relate my experience -- but I had a post-op infection and was given THREE antibiotics (had to drop the normal one given after surgery in lieu of three, this given at MD Anderson). I was horrified because I'm a big taker of probiotics and eating probiotic food but what could I do? And guess what? They worked. The next step IF they did not work was indeed hospital IV. All this before any discussion of removing the TE, atlhough that was mentioned. I'm not sure if it would have meant removing both since I only had issues on the cancer side.
So -- perhaps you should look into another PS. Or tell your PS flat out you want hospital IV antibiotics. Although I know that is really stressful. I've talked to quite a few people who did the hospital IV with success.
HUGS. My thoughts are with you.
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twills - you have an interesting timeline, and I suspect that starting whole breast rads so close to your expander install may have caused this issue, which is a total bummer. I am concerned that your PS is not giving the antibiotics enough time to work, and could be scheduling your removal prematurely based on OR access, as you said. Do you know if he works out of any ambulatory centers locally that might have more availability than the hospital? That might give you more time for the antibiotics to work if so. I am worried that removing the expander and continuing with rads further jeopardizes your ability to reconstruct with expander to implant afterward. I never had an infection, my expander and implant losses were due to skin healing issues, but the majority of ladies on this thread just had one expander out if the infection was one-sided.
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Thank you for responding guys, this truly stinks, I want nothing more than to trust my Dr's and am finding that sometimes that isn't possible. Not sure about ambulatory centers but he does his face surgeries and such at his two clinics. I feel like if I pushed him he would just walk out of the room. I guess I'll have to see how it goes today, although he's fitting me in between surgeries so I'm sure he's going to only have one foot in the door. Would another plastic surgeon see me at this point. I'm newer to my area and don't know anyone. I'm actually close to you SpecialK, I'm in Palm Harbor just across the bay. Thanks again guys:)
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twills - I thought you were nearby! I switched plastic surgeons, and should have done it sooner, but I found that I had to divorce the first one before the second one would see me mid-problem. It is a professional courtesy and malpractice concern for the acquiring surgeon, which is different thing from seeking second opinions before deciding on a course of treatment. I am not familiar with plastic surgeons in your area, but pretty familiar with those in the Tampa area that do breast recon. I can PM you my phone number if you would like to chat. If I were in your shoes I would ask about delaying any removal and giving the antibiotics a chance to work.
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That sounds good SpecialK, my appt is in an hour so I'll see how it goes. The whole radiation thing really complicates everything. Thanks!!
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Good luck and keep us posted! Hang in there!
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In the waiting room and I think I'll make him tell me before he examines me what he would want to see or hear from me that would delay making the decision. My fever has stabilized and I feel tons better however my boob is swollen and slightly lower than before. Almost looks like a real boob. Lol
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