Diep wound going from bad to WORSE

Tracyne

Hi,

For the folks on here who have been through years of cancer treatments my hat is off to you. I have just begun this odyssey.

Jan. 2 right breast removed and diep flap created. Lived through the drains and pain of the incisions. Then two weeks ago a small opening left behind by the plastic surgeon turned into a 2 inch crater. Doctor and nurse say everything's fine this is just the way healing happens sometimes. A week later a new 1 inch crater with total suture separation in both spots. And tonight blood pouring out of the sutures which are actually holding.

I requested a swab of the original problem area for infection.. They declined and said we all have bacteria on our skin.

Why won't the plastic surgeon operate and clean out the infection if there is one? Why won't he sew me back together? So he won't sew me back up what happens now the whole darn “nipple" area goes where?

I am told to pack the wound and wet to dry dressings and a year from now I won't remember any of this. What is this 1801? Seriously pack the wound? Why do patients agree to do this? Why doesn't anyone tell you this regularly happens so make sure you want to play nurse if you go the diep route.

I don’t see any end in sight because I have no plan and every week gets worse. My insurance does not cover any other docs in my area

Sending all of you good vibes. Thanks for listening so I don't have to cry all alone again tonight.

Tracy in NE

Tracyne

additional info:

I am highly suspicious this is a blood flow issue. I mean started as a blood flow problem and probably also has bacteria in the mix here. Things started going south for me when compression garments were added. I was wearing the surgery bra. The nurse balked and I switched to my full figure Bali covered by spanx. The docs office thought that was great. Even though I said it's almoat like my breast Is being squashed.

The surgeon said there he had trouble getting a reading on the blood flow machine which is why the surgery was long and an opening was left. Did I mention I have surgical glue coming out the wazoo?

Can't sleep rib cage aches and I guess they make the chemo pitch this week.

Thanks for listening

Tracy

NancyHB

Hi Tracy. So sorry you're having such difficulty with your DIEP results. There are several threads here for others who have had, or are having DIEP, where you can read their experiences. It seems many of us (myself included) experience some form of wound dihescence (opening) along the way.

I never had a problem with my abdominal incision but did have to pack my nipple incision for several weeks after finding I had a superbug infection. Two hospitalizations and several weeks of IV antibiotics (and much wet-to-dry packing) later, my wound closed very nicely. It does feel a little backwards - why not just surgically clean it out and close it? My surgeon explained this was a better healing method, didn't trap bacteria inside the wound. You may not have an infection; lots of us had wound opening without infection. Sometimes healing is a challenge.

Buthere it is, 18 months later, and I really can look back on that horrible time and be okay now. It does get better, it just takes time. I hope you start feeling better soon.

Tracyne

Dear Nancy,

How are you feeling? It looks like you have more going on now with your diagnosis. You are very brave.

I don’t like anything your doctor said, lol. That’s the way my doctor talks to me. I don the want to whine on because I’ve barely suffered at all compared to so many people .

Thank you for responding

Trac

NancyHB

Tracy - you're not whining at all! Tissue transfer surgeries are long, difficult, and recovery can feel like it goes on forever. The day before my surgery I ran 3 miles; 3 days after it took me 20 minutes to walk down the hall. Looking back I don't think I had fully prepared myself for what the recovery would be like, or truly understood the possibility of infection. We're here to listen and hopefully help, so feel free to vent away!

Tracyne

Thank you Nancy.

I want to cry all day long because I start off thinking this is it I know I’ll turn the corner today. Things stay the same or another bad issue surfaces. I have to call the doctors office and they just say “yeah that’s diep recovery when there are complications , hang in there bye.”

I wonder if maybe healing doesn’t go well because I’m not really cancer free after all at the moment. Maybe cancer gums up the works.

Tracy

Lula73

Tracy I'm so sorry you're experiencing wound issues. It is true that sometimes they open up. Has the dr seen it firsthand either in person or via photo/video via email? If not, that may be a good idea. Once it opens up, it will heal from the inside out. If it's too large an opening the doc should stitch it closed again. Make sure you're not pulling at the glue/trying to remove it. Don't rub it with the washcloth or towel in the shower either-pat it gently to clean and dry it. If you have dangling bits of glue you can trim it close with a pair of scissors (I'd alcohol the blades first) Being careful not to pull any additional glue loose. Also make sure you’re not lifting arms above shoulder height, not lifting more than 5lbs and not doing things like vacuuming, sweeping, etc. All those things can increase risk of incisions opening

Additionally every doc has a different protocol on what to wear after surgery. The docs in NOLA say no compression at all so that blood flow is not inadvertently constricted. Stage 1 Flap surgeries are all about transferring tissue and establishing blood supply after all. You do need support but it's a front close bra with super light support they give you at NOLA and you wear it for minimum 4-6 weeks. Absolutely no underwires til at least 4 week's post stage 2. The bra they gave me is Similar to a front close genie bra that's a size too big so as not to compress.

If you have fluid flowing out of the incisions, it sounds like you may have/had a Seroma. If the fluid looks like what collected in your drains you're likely ok (red-pink-yellow colored and somewhat translucent). If it turns dark red and opaque with or without clots get to the ER immediately. They can call your PS after you get there. I hope this resolves for you soon.

Tracyne

Hi Lula,

It’s actively bleeding now. I see the doc tomorrow morning. I don’t want to see him. He’s watched this develop into a crisis.

I should never have done this.

Thank you for the advice.

Tracy

Lula73

Tracy- im so sorry he’s being so difficult. I would definitely let him know that moving forward you want to be seen and proactive measures taken if you contact his office. Some docs brush things off because they feel patients are just being whiny. Let him know you’re not a whiny patient and that if you call it’s serious. Sometimes they just need a wake up call.

Tracyne

hey Lula,

Thank you for the encouragement Lula. I feel so sick.

I hope,you are well tonight 😉

Tracy

Lula73

Good luck today, Tracy!

Tracyne

Hi Lula,

I was exhausted after the doc visit.

He was thrilled with the fresh blood seeping out. He didn’t say that but I could tell by the way he was talking to me. So they said I should be good to have new sutures put in very soon. Maybe even next week. I am steeling myself for the possibility that more sutures might open in the next 24-48 hours but hoping by 2 weeks from today This will be a memory.

They seemed to understand I’m wearing down a bit. And were a lot more sensitive to the fact this is a very big deal to me even if they do this all day long. The doc was very, very nice and caring so I wasn’t able to say pay attention when I call. I will sleep tonight because I’m not worrying.

Thanks for listening

Tracy

Tracyne

Howdie folks,

The doctor removed the sutures and replaced all them and cultured the main problem area. Then he wrapped me up. Of course “the wrap” supporting the breast stretched out.

I am thrilled to be sewn up.

fingers crossed these new sutures will hold. I am so bored sitting still

Tracy

Lula73

that’s great news, Tracy! Hoping the culture comes back negative too. Let the healing begin!!!

StarlitMomMom

Tracy, I had my DMX with immediate DIEP in November. Oh, I wasn't prepared either for "normal" complications. I had separation of my suture at the left site, what I now know was melted necrotic fat was dripping out in the PS office he had a semi-horrified look on his face and I ended up back in for debridement surgery a week later. I was supposed to have skin grafting the next week after I had a wound vac on both diep mounds. I went back with a mild fever just at 100 degrees, couldn't get skin grafting until the fever was diagnosed, and I had c-diff. I couldn't get skin grafting for three weeks, until the gut infection healed. For those weeks I cried for an hour twice a day as I carefully washed (in my shower) and dressed and packed my numerous and some large surgical wounds. I worked while I was packing my wounds, the c-diff was gone after a week, but as it was over the holidays, I couldn't get back on the surgical calendar until Jan 3rd.

It was the hardest part of this journey. When I was getting dressed one morning, part of my gauze caught on the dryer door, ripped off, and so much blood gushed out I called 911. There I went, naked and crying, to the ER. The bleeding did stop, I learned how to deal with the next time it happened (my little pugs didn't, they still hover near me when I am getting dressed, it was traumatic for all of us.)

It did resolve, though. Skin grafts took well, I am quite scarred in many areas of my foob, I still have many large and small spots of fat necrosis, but it is absorbing and I feel good--physically and almost there mentally. I appreciate my doctor and his proactive approach to the chance of infection--but, oh the holidays were so difficult. Couldn't have visitors until the c-diff cleared, couldn't see my kids or my grands until I could disinfect the house....couldn't sleep with my husband or even use the same bathroom.

I am now able to put myself together and look better than I ever did, Tracy. Just six weeks after that nightmare I am working full time plus some overtime, taking my grandbaby (4 yrs. cerebral palsy, the light of my life) to my chiropractor and carrying her 35 lb self from the car to treatment three nights a week after work.

I have some stiffness from scars and from fat necrosis....but, seriously, just this short time and I am feeling so much better. I agree, I was not at all prepared to care for those wounds...but, now, each scar that was skin grafted is known so well to me....I think the experience helped me love me more, with the scars I didn't expect. Stay brave, we are strong, it will be okay. one day, one hour, one minute at a time....

Denise-G

I am glad they were able to re-suture you. My sister had DIEP and many wounds and wound care. Finally they did a skin graft

on the wound on her breast which sounded a lot like your description, but they could no re-suture. It took a long time and much patience, but it eventually did heal. She had major holes in her stomach wounds, but with her wound care, they all healed.

I was so proud of her with all that wound care. She spent ALOT of time in the La-Z-Boy!

Sending all my best wishes to you.

macb04

Hi, I just wanted to chime in about Vitamin C immeasurably helping with my wound care. I had 15 reconstruction procedures, an extra 5 procedures due to infections and severe rads damage impairing wound healing. All the problems finally stopped when I got proactive and took the large amounts of Vitamin C my Naturopath recommended either orally or by IV Vitamin C (when I could afford it) . Thrre hsve also been studies showing this does not increase the ridks of kidney stones either. Really safe, really effective

Good Luck

Here is the protocol I followed and some supporting research about the role of Vitamin C in fighting infections and in Wound Healing

VITAMIN C HELPS WITH HEALING FROM SURGERY/and can kill bacteria such as Pseudomonas with high dose IV Vitamin C. If you can't get Intravenous Vitamin C, Liposomal Vitamin C can be a big help if you can't afford or find IV Vitamin C.

Having extra Vitamin C, 1,000mg to 3,000mg per day for at least a week before surgery and for at least 2 weeks afterwards. That is what Dr Andrew Weil says. I tend to think it is possible to have even higher amounts of Vitamin C safely. I did that on a number of occasions, what is called "Titrating to bowel tolerance " Basically it means to take a Vitamin C tablet, (chewable type are some of the easiest) once an hour throughout the day. When your body is finally starting to have more Vitamin C than you need, then you will begin to experience loose stools. Then you stop taking Vitamin C, count up how many tablets you have had over the course of the day, and the next day take one or two less tablets of Vitamin C for that day. Repeat that for several days, but as you heal and your health improves you will get to the point of loose stools sooner and sooner (needing less and less pills every day in a gradual taper downward) It is quite safe to do it this way, if you have normal kidney and bowel function. The worst that happens is that you can get diarrhea. It is a great way to tell exactly how much Vitamin C your body needs. Sufficient Vitamin C is crucial to wound healing, helps with making strong collagen. When you hear stories of surgical wounds that dehise it is a high probability that there is a Vitamin C deficiency leading to inadequate collagen production.

Nutritional Support for Wound Healing - Alternative Medicine Reviewhttps://www.ncbi.nlm.nih.gov/pubmed/14653765

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4915787/

Tracyne

StarlitMomMom - wow. You did very well with all the trouble you had. I think I had melting fat leaking out as well. The worst was the blood through then sutures. I almost passed out,

Denise g you are a good sister, I'm glad your sister is on the mend.

Macb04 I have some bit C Andy haven't been taking it. Thanks for reminding me.

Sorry it took me so long to respond I am in the middle of considering chemo that I thought I wouldn't need so I've been crying a-lot.

Thank you all for the encouragement.

Trac

Young36

I had the same issue with my reconstruction last year.

I had a 1 cm spot that would not heal then it grew to a 3 cm square. The surgeon asked me to be patient and gently clean it every other day with saline. She assured me that it would close on its own and the shape would be better than if she closed it. I waited... and waited... at 8 weeks it magically closed in 3 days. I couldn't believe it. She said that we can't see the work the body is doing until it is almost done.

Wishing you a quick recovery.

Tracyne

hi Everybody,

I’m most grateful for the handholding.

I don’t think what happened with me was unique. Women are too patient with these wound closures, imho. When 3 cm turns into 3 inches that’s not helpful to me as a patient trying to heal from breast cancer. So I chose to ask for a more immediateresponse.

Keep in mind when patients doesn’t insist on being sewn up properly they set the bar for all patients. Patients are then expected to be patient and live with a gaping wound. The other side wanting wound closure are treated as outliers.

In my case, chemotherapy was delayed by 6 weeks within an 8 week window to have it initiated.

These wounds do take time and attention away from real life decisions.

No offense intended, jmo.

Tracy

mitzi458

I’m curious...did your wounds not close where your drained were connected? Because it seems like every time my stupid binder rides up and I have to pull it down, seems like it is pulling on my drain openings and keeping them open. Any idea if drains had anything to do with it? Tomorrow is my first post-op visit with my PS and wondering if I should ask him to close me up after he removes my abdominal drains...?

Good luck you everyone! This can be hard enough without going through the complications!

Sending you all happy healing wishes!

Mitzi

Tracyne

I left the hospital with sutures open for draining in addition to 3 drains.

But the 1/2 inch hole became 3 inches 2 weeks later.

*I’m not advocating for the closing of drains*

I’m advocating not spending weeks and weeks or months with open sutures. Every person is different but I personally think toooooo many ladies are walking around with open sutures. We wouldn’t put up with it for our kids why do we accept for ourselves? In my case I wasted 3 weeks nursing a wound when chemo could have been started. Jmo.

I’m not a medical professional and have no medical experience. This is my experience as a patient.

Good luck tomorrow

Tracy

PS

I recommend Diep reconstruction would still get it again .Its an amazing procedure.