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Complications from Reconstruction and immune system issues

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Posted 6/14/2010 12:55 AM (GMT 0)
Hello. I posted here quite a long time ago. I was diagnosed with DCIS, but ended up with a mastectomy after they determined it wasn't the normal DCIS, but aggressive and angry. In the end, the DCIS comprised over 50% of the breast and they also found IDC; the size of the tumor was difficult to tell because the original surgery was done at a hospital out of state. After 3 tries, my onco testing came back as a good score, so that helps a lot.

Anyway, I have an exceptional PS, but my body isn't acting properly; I've developed capsular contracture twice; I had my 3rd surgery on May 19th; I still have my drains; fighting the adhesion's are a daily issue and I have a blood clot. I'm in PT 3x a week and see my PS weekly to help ward of the CC a third time; if this one fails, I'm out of options.

They would like me to take arimidex, but my IgG levels are low and they're not sure why, but the arimidex makes it drop even lower.

Anyway, not sure what I want..maybe to feel less alone. I don't know of anyone who has had capsular contracture once, much less twice and counting.

Thinking of all of you fighting this battle every day.
Janice
Posted 6/15/2010 12:09 AM (GMT 0)
Hi, Janice. Sorry to hear you've been having so many problems. I had a TRAM flap done, so no experience with implants. However, since cap contractures are an immune response to a foreign body, somehow it makes sense to me that your body would react the same way a second time. If this one fails, can they do a TRAM or LatDorsi flap instead? At least you'd be dealing with your own flesh, and not something foreign. I can't imagine going through all that over and over! What a mess, girl!
I guess that's not very positive, but it just doesn't sound like a very positive experience! I'm sorry!

Anyway, feel free to come here to vent. What are you doing with PT? I'll tell you, I asked about physical therapy after my TRAM, and they told me I wouldn't need it. Man, I wish I had known enough to insist on it. So I'm glad to hear you're doing that.

Take care, and I'll have my fingers crossed that this one goes better.

Hugs...
BEV
Posted 6/15/2010 1:59 PM (GMT 0)
A suggestion, find out what kind of sutures were used on your original surguries. Contaminated sutures were put out several years ago causing problems much like yours. If you were healthy before all this, something has caused the problems. I had terrible problems. I would be happy to talk with you if you find it is sutures. Most doctors and nurses do not know about the sutures because it was so hushed by the company. Hugs MK
Posted 6/17/2010 1:08 AM (GMT 0)
Bev, GMA, thank you for your notes. My PS actually talked about the sutures at one time, telling me the same thing and he takes some extra steps?....
I saw my Dr.'s again yesterday. I'm 4 weeks out from the last surgery and on PT days or Dr. visit days, I'm still measuring 100+ cc's in a 24 hour period; this drain isn't coming out anytime soon! I told them how last Friday, they found a blood clot behind my knee; I didn't go to PT that day and the swelling and pain were no fun..no fun! I showed my Husband what they did at PT and he tried..it worked enough to break some of the backlog of fluid.
I need the PT to help avoid the CC, the PT causes excessive fluid and drainage; the excessive fluid means the drain stays in ..on and on. There's one area that is already developed a bunch of scar tissue; my Dr.'s are hypothesizing that my body is reacting to the extra fluid by developing scar tissue..It's a catch-22 situation..

Thank you for being a shoulder for me to lean on, especially when so many are facing a much more difficult road.

Bigmen, thank you for your prayers :)
Janice
Posted 6/17/2010 2:37 PM (GMT 0)
After my surgery I had excessive drainage, too. I don't know what the extra precautions are but I will tell you that the contaminate is extra strong I wore IV antibiotics for almost a year before the surgeons finally removed all my abdominal muscles. I now look like I am pregnant with twins at term and I am almost 72. I ride in a wheelchair most of the time because the down pull is making all my internal organs fall. Removal was done Jan 2000. Have you had a culture of that fluid done? I did not run a fever with the infection, nor did I ever feel ill. Keep trying to find an answer. Bless you, MK
Posted 7/7/2010 2:15 AM (GMT 0)
Hello again. I had my 6th weekly check last Friday; news was not good, I've already developed my 3rd case of capsular contracture; all of the efforts, precautions and extras failed. He removed my drain, which is always a good thing!, but the road ahead for me is to either have the implant removed and have no reconstruction or to have a flap..either tram or lat..he's leaning toward a tram I think. I can't do anything until I retire (hopefully) in February of next year; the surgery...as you are all probably aware requires a lot of time off from work, and I don't have time left...using FMLA or LTD pushes my retirement date back., so we're going to keep working on this thing to keep it from progressing and keep me going until February.
Janice
Posted 7/7/2010 6:06 PM (GMT 0)
LdyJane, I just want to send prayers your way for a great success with the Tram of Lat and a quick healing so you can get on with your life!

Hugs,

Gail

Posted 7/8/2010 12:17 AM (GMT 0)
Sorry to hear you're continuing to have problems. I'm not sure there is a really "good" way to go. Just a mastectomy, and then you have the prosthesis hunt, and frozen shoulder issues, etc. Implants, well, you know about those! But TRAM's have their issues, too. Since you have a good PT you're working with, explain the TRAM procedure to her. I really think PT following a TRAM is a necessity, but rarely recommended by plastic surgeons. A good PT can really make the whole recovery process much easier! And with a LAT, they often use small implants in conjunction to get a better result, so I would think they would go with the TRAM.

Hope things hold together for you until February. In the meantime, keep us posted on how you're doing, Janice. Hang in there!

Hugs...
BEV
Posted 7/9/2010 12:09 AM (GMT 0)
I'm loving you all..thanks for your shoulders and kind words. My PS is now sold on the value of PT, and when my Husband can't go with me, my PT does! So everyone is learning and we're developing a plan for core strengthening and something else that she mentioned...I have my concerns, but today is already better than yesterday :)
Janice
Posted 7/10/2010 5:07 PM (GMT 0)
Glad to hear there is one PS out there who has been sold on the value of PT! You've done all of his patients a huge favor!

Glad you're feeling better about the whole mess. And it is a mess, Janice, but this, too, shall pass. Keep your chin up!

Hugs...
BEV
Posted 8/5/2010 12:53 AM (GMT 0)
To the good women of healing well!
We go back tomorrow to see my PS, the PT has been very helpful; the complete rigid nature has eased; the fluid retention is all but gone, but the basic capsular contracture remains. I don't think my PS is going to change his mind; my family doctor (who knows and cares so much!) does not want me to have the flap...he's concerned about my inability to heal well; he's worried that there may be an auto-immune problem as an underlying condition...He tried to talked to me about having a prosthetic. I don't want to be a whiner here, but honestly, I have a crap body!, there's more wrong than right. It is hard to maintain a semblance of optimism and I'm struggling to come to terms with the possibility of no reconstruction.

We need to have a heart to heart with my PS tomorrow (who also cares). I go back to Cleveland later this month to deal with other health things, and we're looking at meeting with an auto-immune Dr to delve into this some more.

Reconstruction or not; what are your opinions?
Janice
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