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January 2023 Surgery Buddies?

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Comments

  • momgoose
    momgoose Member Posts: 71

    meow13,

    I know what you mean about the emotional distress. I cried more about this than my diagnosis. I think it's the little hits that keep coming that are sometimes the hardest. We can kind of brace ourselves for the big stuff, but the smaller blows that come out of left field just knock us out for a bit. I know this will eventually be ok. I hope...

    Christina

  • kadril22
    kadril22 Member Posts: 13

    Oh Christina (mogoose) I am so so sorry you have to deal with this. I understand to some extent the anger sadness and frustration, though not losing six months.

    If I may ask, is it large areas of necrotic tissue? I worried I'd lose my tissue expanders because I had very large areas of necrosis.

  • pjc5399
    pjc5399 Member Posts: 32

    Christina…Big huge uggggghhhh! I am so sorry! Really, there are no words. First, I hope your surgery goes uneventfully and corrects the issues you are having. Did they just notice a necrosis issue this far out? I’m holding my breath every time I unbandage my nipples. For me I’ve been getting through this by seeing everything as a series of milestones and when something changes or doesn’t go as expected, it rocks me. I was in tears because anappt time moved. Trying to lower my expectations of timing and how everything is going to work but I’m a bit of a control freak and this is definitely a test of that. This is absolutely a safe space to vent your anger, frustration and sadness. I know I feel feel pressure to say everything is good although I do have some close friends I can vent/whine to without them trying to be all positive on me. I’m a positive person but sometimes you just need to complain because things suck. Then I’m capable of picking myself up and doing what needs to be done. Please let us know how you are doing when you feel up to it. You will continually be in my thoughts.

  • momgoose
    momgoose Member Posts: 71

    kadril22 and pjc5399,

    Surgery went fine and I am back home again and relatively comfortable (but with 2 new drains...)

    The necrosis was (as far as I know) limited to the edges of the incisions, but when the surgeon took off the surgical tape that had been covering until yesterday, he said both incisions were open at least down to the fat layer. I had mentioned to the nurse the week before when I had my last drain out that I had some oozing (clear yellow/pinkish fluid, no puss) but she indicated that was ok. Apparently it is not. I'm a little irritated with that, but what's done is done. I did not speak to the surgeon after he was done today. He told my husband there was a lot of fluid on both sides and he drained all that and removed the expanders and washed everything out and then revised the incisions. I will be curious to read his post-op note when it posts to MyChart (it's what I do for a living anyway, so I will be able to interpret it just fine.)

    Kadril22, to the best of my knowledge, the 6 month waiting period is to allow any possible infection to be cleared and give the skin time to fully heal. I had the option of having the TE's reimplanted right away, but the surgeon said it was considerably more risky since there seemed to be some infection starting (what he could see from the outside). He left it up to me to decide, but if infection set in with the new expanders, it would necessitate a third surgery and honestly, I just felt like the risk that things could go really wrong really quickly was too high. It would also mean losing more tissue, which seems to defeat the purpose and would cause more pain. Right now, I am just focusing on healing completely and getting back to a healthy state. The 6 month wait seems long, but I know others have been told the same time frame, so I'm guessing it's the standard of care. It stinks, but I've ordered some inexpensive prosthetics to try and I'll just have to make the best of it. Maybe I'll work on getting back in better shape in the meantime.

    pjc5399, Your comment, " For me I've been getting through this by seeing everything as a series of milestones and when something changes or doesn't go as expected, it rocks me. I was in tears because an appt time moved. Trying to lower my expectations of timing and how everything is going to work but I'm a bit of a control freak and this is definitely a test of that." really resonates with me. Everything about this for me, has been a test of patience. It took 3 months to even have the mastectomy and now this and I'm still waiting to find out my Oncotype score and next steps. Lowering expectations on timing is a lesson I am trying to learn as well. Getting my hopes up is dangerous - but I try to generally be a positive person, so it's hard not to, but the crash when things don't go well is even harder.

  • pjc5399
    pjc5399 Member Posts: 32

    Here is my 2 week update. Hope this helps others as I know reading experiences helps me. My other two drains came out yesterday. I took Tylenol about an hour before and ibuprofen before bed last night (although may not have needed that). I’m on my last day of gabapetin. The drains have consistently been 20cc or less per 24 hrs since day 3. The right was still very red. It had gotten darker. Looked like when they take blood for lab work. The left was more that lighter amber color. As with the first two drains, I didn’t feel anything. Just a pinch when suture cut but nothing when they were pulled out. Praying I don’t get a lot of fluid accumulation now. The drains didn’t really bother me but happy to have them gone. They did a 60cc fill of each expander first. I am normally not squeamish around needles but I didn’t look at what she was doing. It kinda freaked me out a bit since it is sensitive but I can’t feel anything. They find the port thing and mark it, sterilize the area then use a pretty big needle to add the saline. I know it wasn’t much but it looked like a lot! Very fast. Maybe next time I’ll watch. They do the fill first (before removing the drains) so as to push out any fluid that might be hanging out in the spaces of the uninflated expander. This did help smooth some of the edges but not all of them. We might not ever get to where they are all smoothed out. The area is bandaged for 24 hrs (no showers for 24 hrs) so I can’t really see if I have new bruises to add to all the others. I’m sure I will. I am still so very bruised from the surgery. Rainbow of colors on my breasts. Everyone seems to think this is normal and will just take time to dissipate. She said the spidery vein area may never go away though unfortunately. Nipples look better but still want me to cover them with the bacitracin for another week. Scar looks huge to me too but at least it’s mostly in the IMF. The right side extends a little more. I guess to get better access to lymph nodes. I keep reminding myself it’s only 2 weeks, it’s only 2 weeks. The first drain scars are tiny so hopefully these others will be too. Re the fills: I was pretty flat chested and have no real desire to be bigger so this might be it. I’m at 180cc which from everything I’m reading seems like not much but it looks huge to me. I have cleavage! I have a fill scheduled for next week but we’ll see. She said I can cancel or wait and think about it more or even do less than the 60cc. I’ve had no issues with my decision making up to this point but this one feels hard. I do now have to wear a sports bra 23/7. I am not one to wear a “bra” normally. I wear a sports bra when exercising but otherwise a cami with or without a shelf bra. It actually feels better wearing a bra, though, and sleeping was better. I had no compression at all the past two weeks so this is very different The one place I have a lot of sensitivity is on the corner of my armpit on my right side. It’s not completely numb. Very odd feeling. Like a sunburn. But anything touching or rubbing it is bothersome, even just my hair. The bra over the area helps because it doesn’t move and prevents other things from rubbing there. My range of motion seems pretty good. I’m cleared for 10 lbs, my next set of arm exercises and driving but still trying to be gentle with myself and not do too much.

  • coloradomom1
    coloradomom1 Member Posts: 7

    Has anyone started physical therapy? I went to my first appointment yesterday. The exercises are seemingly so simple, like rolling my shoulders and lifting a dowel above my head while lying down. Yet today I feel just horrible. Ouch. I am SO sore in my shoulders, and I’m having significant pain and swelling under my arm. I took Advil and hopefully will get some relief. I really, really want to put some ice at least under my arm, but my surgeon told me no ice, which I’m assuming is still the case. I know the ice would give me relief (it gave me more relief than painkillers from the hematoma I had after my biopsy), but apparently I should not use it. Ugh.

    Has anyone gotten back to driving yet? I tried it this week. I’m still sore and don’t feel confident driving at high speed, like the highway (didn’t even try it, but I can drive shorter distances nearby. It is nice to be able to pick up my daughter at school again. Each day of this healing process is an adventure, some good and some not so much.

    I saw my oncologist yesterday. No lymph node involvement, and no need for mammaprint because my larger tumor was just small enough that they wouldn’t even consider chemotherapy. So that’s a big relief!

  • momgoose
    momgoose Member Posts: 71

    pjc5399 and Coloradomom1,


    Sound like you both had great updates - I'm so glad to hear positive news. I am still working on range of motion. I haven't done formal PT, but just trying to stretch and do exercises I have found online for post-mastectomy. My right arm is pretty normal, the left is still more sore, but that's where the lymph nodes were removed. As for driving, I only tried twice, since I had to get more drains unexpectedly. It is a little uncomfortable, but I can do it. I just worry more about how awful it would feel to be in an accident this soon after surgery.

  • momgoose
    momgoose Member Posts: 71

    Happy update to report - I got my oncotype score back today and met with the Oncologist. I scored a 6, so no need for chemo! I will be doing Tamoxifen for at least 5 years, which will hopefully not give me too much trouble. I was so worried about that score, but now I feel like I can breathe. If the reconstruction takes longer, it takes longer. I just want to heal properly and be as healthy as I can be now. Today is a good day! :)

  • kadril22
    kadril22 Member Posts: 13

    Christina, I’m glad you got some good news. Pjc5399, thanks for the update on what getting a fill is like. Coloradomom1, I’m not doing any kind of official PT, but I’ve been doing things like shoulder rolls and arm lifts since the day after surgery. I did develop some cording after my surgery January 9th, but my PS seemed to have broken some of that up during surgery last week.

    I had my first post-op visit with my PS after surgery last week to remove necrotic tissue and a latissimus dorsi flap procedure to repair. Bandages were removed front and back, and everything looks great. I didn’t get any drains removed—my PS said with a surgery like this, he’s not going to rush anything. So here I am, four weeks Monday from my mastectomy, and I still have four drains. Ugh! Disappointing, but I do appreciate him being careful.

    It’s a little bit slower recovery for me, but I feel good overall. I asked yesterday about getting on the bike I have set up on a trainer in my living room to do some very light pedaling, but he shot that idea down because of the type of movement to my back it would produce.

    I go back in a week for another recheck. I don’t expect to start fills for at least three weeks, but I’m fine with that.

  • pjc5399
    pjc5399 Member Posts: 32

    Hurray for no chemo! That’s such good news! I’ve been doing the exercises they gave me to do this whole time. Nothing big. Arm raises, etc. No official PT although I have the referral if I wanted. I have pretty good range of motion at this point without feeling like I’m pulling anything. I was in very good shape prior to surgery and really want to get back to exercising but need my mantra…it’s only been 2 weeks, it’s only been 2 weeks. I don’t want to cause any fluid buildup and want all this bruising to heal so trying to take it easy. Sleeping is still a struggle. Last night was awful. I haven’t driven yet but have the ok. I rarely drive anyway. Guess I should go try. I look scary naked but put on a bathing suit top and was quite pleased. My skin is really starting to revolt from any bandage or tape adhesive. Itchy and red wherever it goes. Something a little weird…I haven’t used deodorant/antiperspirant since before surgery. Keep forgetting to ask if it’s ok but oddly enough, has not been necessary anyway. Kinda wondering if the surgery did something or if I’ve been using it habitually my whole life and it wasn’t necessary. LOL! Took my last gabapetin so going drug free (at least until next fill). Hope everyone continues their healing journey uneventfully and has a great weekend!

  • Illinois17
    Illinois17 Member Posts: 2

    I am reading about the experiences here with hematomas. I had a left lumpectomy for DCIS 2x in 2017 and developed a small hematoma after the 2nd biopsy, it hurt, but I reabsorbed it in a few weeks. My DCIS came back and I had a double mastectomy in 2022, I've had 4 surgeries in 2022 for removal & reconstruction, no hematomas. I had my final implant reconstruction on 12.27.22. on 2.5.23, my left breast swelled more than double the size, I saw my surgeon the next day, after an ultrasound, he went in and it was thankfully blood - and I now have a drain again. The surgeon said it is very rare to develop a hematoma this long after surgery. I may have to have another surgery to clean the pocket.

    I am going back to my oncologist to discuss clotting problems. The hematomas were both on the left side.

    Has anyone else had a late stage hematoma after surgery?

  • K-Gobby
    K-Gobby Member Posts: 144

    I sure am sorry to not have checked in. This will be long.

    Yes, none of us have the same body or breast cancer diagnosis. After my original left mastectomy last Feb with ovaries and lymph nodes taken too, the recovery was slower. My tummy felt super painful. Like 1000 sit ups daily. I got Norco which I used for 3 days. Then I switched to Tylenol for a few. I will say my left breast was skin saving with an expander. The 3 sentinel nodes and the nerve blocker had me very numb. I never felt pain on my breast side. Just my tummy. One tube came out at post op. The 2nd about 1 week later. Started darker brown and got lighter as we progressed. Some of those stringing bits came out too. Often what clogged the tubes so I had to massage the entry area of the tube. The first 9 days my sister was there. That was a blessing.

    After I had frozen shoulder and a blood clot formed just under 2 months. Ultrasound on my leg, blood clot on right side back of upper thigh.

    6 months of eloquis. Frozen shoulder got better after 8 physical therapy appts and getting back to work in person.

    Finally, eloquis done the end of october. Me to western ny end of November. Doctors available Dec 28th. Breast surgeon and plastic surgeon. Surgery went well. I was given lovenox blood thinner shots that I just finished Tuesday morning. They needed to do that because of my blood clot not yet disolved. I had my right mastectomy and almost kept my right nipple. No cancer on that side, but before surgery I got honest and realized I did not want it. Symmetry. The possible placement of the nipple after all the skin was removed. Would I want just one? Could a fake one match? I am 62. I carry the Brca2 mutation. My tumor was Her2+. Let it go I told the 2 surgeons. My confidence in both of them is why I traveled to a different great hospital across town to have my breast surgeon. My plastic surgeon is at that hospital too. This breast surgeon was the first dr I. Spoke with who gave me the first view of what was to come.

    This Surgeon requests 1 overnight. I was checked, both drains drained and I was able to go potty alone. Seems the anesthesia keeps us constipated. I drank water at home, ate my fiber cereal and thankfully was ok. I had dreadful constipation issues with chemo in late 2021. Keeping away nausea the Zofran and senna became my buddies.

    So, nearly from the time I got home my right drain was barely draining. By the 3rd day, nothing. Called triage at the COH, and the nurse said if I did not have a fever, no pain and felt good, to check back the next morning. My left side drained and I felt good till the 5th.

    I did notice I was slowly swelling and a hematoma formed a couple days before my post -op Jan 5th. It got bigger.

    On Jan 5th I drove to see my breast surgeon 1st. She was concerned about the hematoma and the no draining. I was swollen and delightfully bruised. One or more in this thread spoke of bruising. I had forgotten to say once my bandages came off the morning of day 3, i was surprised at the colors.

    So, my surgeon called my plastics doctor. He was at the airport. Going on vacation. He called the COH to talk with the on site plastics dr. I had 5 hours till my plastics dr visit, so i wandered around. Could not decide lunch, so i ate some tortilla chips. Drinks some sips of water. Got a call in a few hours that COH wanted an US. I did not know the prep happening.

    At my appt after the US at 4pm, I got blood taken, asked about what I ate and drank and within 4 hours I was in the OR. My surgeon asked this surgeon to replace my tube and clean away the hematoma and empty the area. I got my friend to pick me up the next day so I could stay at her house overnight. The next morning, I messaged my drain and it starting flowing good.

    Back to the dr. My bonus? No infection, dr and team cleaned out and replaced the implant. Put a larger tube in that made my day! I bought the 2 pocket belt that I put the extra tube in one and the bulb in the other pouch. Under my clothes and sleeping was easy. The drain was so much easier. This doctor put the cover over the drain exit and I got to keep it on a week. No cleaning the area morning and night with wipes, cream, covers and tape. . Just the shower drain i used. Omg. Heaven.

    Today is Feb 8, my right side is nearly healed. Almost all the glue over the stitches is out. 2 more weeks of not lifting over 10 lbs. My plastics Dr apologized for leaving me with the swelling and all. HOW could he know? The fact he called and set up Surgery is what makes him a stand up dr. He could have had the breast surgeon make the calls. He took her call and made calls. A great Dr took care of me.

    This is my story, I now need to read 2 more pages or more of your stories.

    I pray all of you have smooth days ahead. I have learned that together we can support each other.

    Kgobby


  • pjc5399
    pjc5399 Member Posts: 32

    Today is exactly 3 weeks post-op and 4 months since my annual mammogram that started me down this road. A few days ago I gave in and started taking the muscle relaxer before bed. My lack of sleep was really affecting my well-being. It helps a bit. I still wake but getting comfortable and going back to sleep is a little easier. Delicate balance between my sleep and my GI system. Ditched the wedge thing as it was not helping and just have a lot of pillows. I got my genetic testing back. There is a brca2 mutation in my family which I have known for many years I do not have. I found out I do have a chek2 one but it’s only linked to moderate increased risk of bc and no other cancers so not something of concern. Met with oncologist who confirmed no additional treatment but will see him every 6 months. I had my second and last fill yesterday. Another 60cc in each. I’m pretty confident I’m done at 240cc. Feel huge and not in a good way. I did watch the process this time. Should have videoed it. The expanders are 350cc so not full by any means. I’m not entirely sure why such large ones were stuck in to begin with. Going to be a mind over matter thing because I hate them. I am still so bruised. Apparently it’s getting better but it’s not pretty. The really bad ones are more yellow. One expander looks a bit higher than the other but assured this won’t be an issue. I’m very thin so you see every lump and bump. My drain scars look better on the left than the right mainly because there is still some slight swelling on my right side. Not a lot, and nothing anyone would notice except it is just more than the left. I gave up bandaging them because it just made my skin itchy and red. The raw, burning feeling near my right armpit area is marginally better. (Maybe I’m just getting used to it.) I’ll take any improvement I can get that makes me think it might eventually completely go away. Nipples still seem ok. They’ve gained a little more color. Not as scabby. No where near what they were but ok. Scars in IMF still look huge but for the most part can’t see them. Looks a bit like a shedding snake with the glue coming off. They said don’t pick at it so I’m trying to just ignore it. Range of motion is good. I just do the arm exercises I was told to do everyday. I can pretty much do everything except reach for things high up on a shelf and I’m constantly evaluating whether things are more or less than 10 lb. Seems this whole process will take longer than I was originally told due to scheduling (even assuming best case scenario on healing and no setbacks). I mention things to friends who have been through this and immediately get an “oh, yes” and a story. It’s quite helpful. I’m thinking it’s a bit like childbirth in that you forget many of the bad parts once time passes and you gain some perspective. At least I really hope so. Starting to make plans that involve me getting off the couch. 😄

    Hope for continued healing for everyone!

  • momgoose
    momgoose Member Posts: 71

    Hi ladies! I'm checking in to see how everyone is doing. Tomorrow will be 6 weeks out from my double mastectomy with tissue expander placement and 2 weeks out from the second surgery to remove necrotic skin from non-healing incisions and remove the tissue expanders. So I'm not entirely sure where I am in my recovery! I saw the plastic surgeon again about a week ago and the new incisions look better and the skin seems to have good blood flow. The right side has a tiny spot that still occasionally has some minor serous drainage (it's very sporadic, so I think it may be when I overdo it a bit - the problem is, I don't know when I've overdone it until I have!)

    Anyhow, the biggest improvement is two-fold: at the most recent appointment, I talked with the surgeon about possibly trying some medication for nerve pain rather than continuing to take ibuprofen all day long along with the occasional percocet to help me sleep. I've felt all along that most of my pain was nerve related and I was still really uncomfortable within 4 hours of taking any pain meds. I felt like my entire chest was burning most of the time. So, the PS put me on gabapentin. Since starting that, I haven't needed any other pain meds. So I'm thinking I could have avoided a lot of unnecessary pain over the past weeks if I had had this med since the beginning.

    The second update is that after starting gabapentin, I am back to sleeping in my bed. It's not perfect and I still am not anywhere near 100% comfortable, but while the expanders are out, I'm sleeping on my sides again - somewhat modified with pillows and different arm positions, but it's not the recliner, so all in all - a win!

    I'm finding that prosthetics are challenging. I can't really find any cheap ones that are quite right. The best ones I've found that fit my poor concave massacred chest were ironically, the free ones that just have some stuffing inside. They can be purchased for either $10 or $20 online (can't remember which) and they are like two tiny pillows. They are comfortable, but they don't always like to stay put. That makes life interesting when we are out and about. My bra keeps riding up, because there is nothing there to hold it in place. I have often thought that I needed suspenders to hold the bottom band of my bra down - and when I was looking around on Etsy for something, I actually found some just for this purpose. So I'm waiting for that to arrive to see if it helps. It can't hurt!

    So, that's my update - -How is everyone else feeling these days?

    Christina (I'd add my details to my signature, but I can't figure out how!)




  • pjc5399
    pjc5399 Member Posts: 32

    Christina- I’ll update tomorrow (4 weeks!) but if you want to add details, you click on the little icon with your initial up at the top (need to be logged in, mine has a P ). This with take you to where you can add diagnosis and treatment. Realized I had not added my surgery so I just did that.

  • pjc5399
    pjc5399 Member Posts: 32

    4 week update! At the beginning of this past week I was truly wondering how I was going to last another 4 months with these expanders. Felt a bit like when you are engorged with milk when breast feeding. Tight, sore, sensitive and hard with muscle spasms (and the expanders are OTM). In the past two days things have gotten better. Not great but any improvement gives me hope that I'm not going to be completely miserable until the exchange. Definitely worse in the evening and during the night. I find a hot shower helps. What else? I am having random skin sensitivity. All will be fine and then I'll get an itchy rash on my sides or abdomen. Not sure what that's about. I'm still discolored from all the bruising. More on right than left. It's improving slowly. My PS said no binding or bras for the first two weeks to encourage blood flow to the breast skin and nipple vs compression which helps with bruising (at least that's what I've read and which might explain things). It will probably go away just in time to bruise all over again when they do the exchange. LOL! While I've had a few bits flake, I still have almost all of the glue on the incisions so they don't look great. One little place came off and the scar underneath is fine. I hoped when that happened it meant it would all start to come off. Nope. I was told to let it come off on its own but it's been 4 weeks! It has to come off eventually right?! I'll revisit the issue with the dr next week. The drain scars look like little divots. Wish they would have put a stitch in or glued those shut! I get random little nerve shocks. Kinda between a static electricity shock and pins and needles. Not painful and very brief. Range of motion is fine. Just need to be careful not to reach/push /pull in certain ways like pulling a fully open SUV door shut is a no. I've read and been told that a month was a turning point and that seems to be the case with me. Hopefully, things will continue to improve with no complications. 🤞 Hope everyone is doing well and has a great weekend!

  • momgoose
    momgoose Member Posts: 71

    pjc5399,

    Glad to hear that you seem to be turning the corner with how you feel. That's very encouraging. I get the weird zings and zaps too. They only last a second or so, but they are intense. I hope that you continue to feel better each day and that the next few months fly by with those expanders!

    Christina

  • jasmine000
    jasmine000 Member Posts: 5

    Hello; I am just finding this resource now and I am learning so much from reading your posts. I recently had my surgery in January of this year also but I had a lumpectomy. I am currently considering going back in to see if I can get a mastectomy. I have an ATM mutation and apparently there could be more side effects from radiation (didn't know this before going into surgery for lumpectomy) and I don't really think the lumpectomy is going to give me much peace of mind. I am only 41 years old so I just keep thinking that it's going to come back. I am meeting with my surgeon this week to discuss options.

  • pjc5399
    pjc5399 Member Posts: 32

    I would like to think so.

    The next person has a good eye for colour.

  • wookie1
    wookie1 Member Posts: 2

    So glad to hear someone talk about that "scratchy sunburn feeling" in the crease under the armpit -- SO annoying and difficult to figure out what to wear to not aggravate it!!! I am just over 2 weeks out so you give me hope it will go away!!! May I ask when you started using the vaseline/vitamin E oil on your scar? So far I have been told not to use any lotion etc. but the whole area is dry and pulling. Thanks for the update and wishing you continued healing!!

  • kadril22
    kadril22 Member Posts: 13

    Here’s my latest update: my two remaining drains did come out on Wednesday simply because I was at the time limit of what my doctor allows.

    Two days later, on Friday, I returned to his office where I had nearly 200cc’s of fluid pulled from the right side of my back.

    I’ll be calling the office first thing in the morning because it didn’t take even 24 hours for the fluid to build up to an uncomfortable level again.

    I’m frustrated, sad, and tired.

    ~Ad

  • pjc5399
    pjc5399 Member Posts: 32

    wookie1 - After 4 weeks when the glue wasn’t budging and I was having a reaction to it, I was told I could. Prior to that I wasn’t allowed to use anything and was told not to pick at the glue. I think the armpit crease thing was at its worst between weeks 2-3 so hopefully it will start to improve for you too! It’s not 100% gone (as my right is still more sensitive than my left) but not something that bothers me at all now.

    Kadril22 - I hope you turn the corner soon and this journey gets a little smoother.

  • momgoose
    momgoose Member Posts: 71

    kadril22,

    I am so sorry to hear you're still having so many issues with fluid buildup. That must be miserable. Are you on any antibiotics for potential infections? Do the doctors have any explanations for why this keeps happening? Keep us posted as you feel like it. I know you must be exhausted mentally, emotionally and physically,

  • kadril22
    kadril22 Member Posts: 13

    Momgoose, apparently this isn’t uncommon with the latissimus dorsi flap procedure. I had 210 cc of fluid drawn off the right side of my back yesterday and 30 cc drawn off the left side. I was wrapped in an ace bandage and told to wear that 24 seven except a shower. My next appointment is Monday where they expect they will draw more fluid off my back. This will be a weekly thing now until I heal. The wrap is supposed to keep my skin pressed down to the layer beneath it to prevent fluid from getting between the two layers. The nurse said the longest she’s had a patient have to come in for weekly fluid draws is two months. With the way things have been for me thus far, I fully expect to smash that record.

    I am on antibiotics, but I was told yesterday that these pockets on the back are completely separate from the pockets in front and the tissue expanders should be protected from any type of infection because of this fluid buildup. The antibiotics are a precaution, and at my request.

    I’m a photographer and have documented every step of this process. I’m including a couple of links below to blog posts I wrote. I don’t know if this is allowed, but I guess it can be removed if it’s not.

    The first post shows the damage that happened after my original bilateral mastectomy on January 9.

    https://www.adriannekimbrell.com/post/the-good-the-bad-and-the-ugly-of-my-cancer-path

    The second post was written after my revision surgery January 25 where a latissimus dorsi flap procedure was done to repair.

    https://www.adriannekimbrell.com/post/untitled-10

    The repair looks great and has healed well. It’s the back now that is slowing progress.

  • pjc5399
    pjc5399 Member Posts: 32

    Adrianne - Read through your blog. Really no words. I know you’ve been sharing what happened here but seeing it was a whole different thing. I’m so sorry this was part of your journey but I believe you sharing your experience will be so helpful to others and hopefully helped you process it all too. I am amazed with what surgeons can do. Your reconstruction looks really good now and I hope you continue your steady progress without complications. Any lessening of the fluid buildup this week? Oh…and baby Groot is so cute. Very kind of you to take care of him/her.

    Week 6 (plus a few days) update - Nothing really to report. I’m in limbo until the exchange surgery in June which seems very far away. 🤞 nothing impacts that. Still hate these expanders but I’m tolerating them better. I actually have moments that I’m not thinking about them which is such an improvement. No restrictions at all. Was told I could exercise vigorously, ride roller coasters and swim if I wanted. Don’t need to wear the sports bra 23/7 (just if I do the aforementioned activities). I’m lumpy and mottled but that’s just how it is. Look fine in clothes and if I wear a sports bra. I’m definitely not huge but bigger than I was which is a little odd. Scar underneath is very thin. Looks great. It’s wider where it sticks out past the breast (more movement and scar tissue in that area I guess). Don’t love this. Will discuss with PS in a few months. Maybe it will get better as it heals more. No one can see it but me (and my husband) so not a huge deal in the scheme of things. Sleeping is still hit or miss for me, although to be fair, it was hit or miss before. This just adds one more thing that can cause an issue. I was a stomach or side sleeper pre-surgery. I can sleep on my side although it can be uncomfortable. However, I keep waking myself up when I attempt to lay on my stomach. I don’t do it on purpose…just in my sleep. It’s like you laid down on two large rocks. Not a good feeling. Anyway.. All in all pretty pleased where I’m at. I know how I felt along the way..and I definitely had my moments…but it’s been better than I anticipated and time gives perspective. Very thankful for that. Kinda wish I had pushed the direct to implant. I do understand why my PS isn’t a fan and hindsight is 20/20 though. As I’ve mentioned before…patience is not a virtue I have.

    Hope everyone is continuing to heal and having a great weekend! ❤️

  • kadril22
    kadril22 Member Posts: 13

    pjc5399, we’ll, I’m a little jealous you can exercise vigorously and ride roller coasters and no restrictions. I’m allowed to take short slow walks that don’t break a sweat. And I get it, I really do, but patience isn’t usually one of my virtues either.

    Thank you for looking at my blog. It did me good to put it out there. I am still dealing with fluid buildup and still in a compression wrap. I have an appointment in the morning to have it aspirated. I think it must not be as much because my back isn’t as tight or tender.

    And Baby Groot….he’s got family now. Three brothers: Drax, Rocket, and Yondu.

  • momgoose
    momgoose Member Posts: 71

    Adrienne (kadril22) -

    Thank you for being so open and sharing your experience. I've been so busy getting back to everyday life with my kids that I've hardly had a spare moment lately, but I am amazed at your positive attitude in spite of the many setbacks you've experienced. I know you're tired of all of this by now. I'm hoping that the amount of fluid that is collecting is substantially less each day/week and that you are seeing positive progress and healing as each day passes. If it helps, I think your final product will be spectacular and you are so much farther along in the process than I am still. You look amazing!


    Christina

  • momgoose
    momgoose Member Posts: 71

    pjc5399 -

    Your update sounds very good. I know June seems so far away, but when I think about how fast (in looking back) January and February went, June will be here in no time! Sorry you're still struggling with sleep. I think that's just a given at this point. I was finally able to get back to sleeping in my bed a few weeks ago, but I still wake up at least once a night, if not more. I'm sure that the TE's don't help with getting comfortable. I hope that you are able to find a comfy way to sleep soon!

    Christina

  • pjc5399
    pjc5399 Member Posts: 32

    Been awhile since I checked in on this website. Hope everyone is doing well. I have my exchange surgery next week. Hurray! Only nervous about the fat grafting portion. I wish there were more “day by day/week by week” stories of that recovery process. It just seems what has been explained to me is different than the little info I can find out there and I don’t personally know anyone who had it done (I had friends/family who had dmx which was very helpful).

  • pjc5399
    pjc5399 Member Posts: 32

    Had the exchange yesterday. All good. They did something different with my anesthesia so no nausea this time. I was a little sore at first and a little sore this am (kinda like if you worked out too much) from the fat grafting. They took from my outer thigh, flank and stomach (I’m very thin). Hard to tell how much because I’m swollen (and didn’t think to ask). I keep leaking from the incisions (normal). I’m just wearing spanx at the moment (recommended by my Dr). I do have a Marena garment which I will put on but wanted to stop leaking so much. I’ll probably put it on later today. Breasts are going to be bruised but look good. I was pretty flat before so this is a change. I let the dr decide size required to minimize rippling. Need to fill the pocket as much as possible. So happy to have this behind me! Happy to answer any questions.