NOLA in September?
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In NOLA they give you drain belts with pouches for every drain. I came home with 2 belts & extra pouches so I could always wash one.
They also sent me home with a Tourniquit(sp) for drains when showering. That works very good. Just be careful if you use a Hair Conditioner...Several times when I rinsed my hair the knot came out of the Tourniquit
Bayyyy I had a waist belt & it held my breast & hip drains. I have a Picture of that on Timtams site.
Pam
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Cat, NOLA gives you everything. For shower I had a huge blue rubber "ribbon like" band that they put through each drain "hoop" and then tied around neck. It was great, easy to untie, but did not come open in shower.
Anne - How far out of stage 2 are you? I have been wondering about Scar Massage .... I've had a few massages and I know what you mean, they are very careful about draping you with the sheet so just one part is showing. I never felt totally nekkid though I was! Funny right?
I wonder how far out from surgery before we can do scar massage. I am 7-8 weeks and have just started some myself....
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Hi Girls...it has been over 5 weeks since my stage 1 and I still have a lot of surgical glue stuck around my flap on the breast...I have picked some of it off, but some of it just won't go away. Did anyone else have this problem and what did you use on it to dissolve it? I don't have any on my hip anymore, I guess it wore off. Thanks!
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Thanks again for the info Spring. So helpful, as always.
Glad to hear they are able to lower the ab scar if necessary. Also, knowing what to expect immediately post-op is good, so we won't be in too much shock! LOL! Right afterwards I'm sure it's not a pretty sight. Thanks again!
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Thnx, Pam I'll go see if I can find you over there!
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I am another one who really appreciates everyones thoughts on how they felt post-op.
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Hi Spring: Can you please add me to the list? Though I was trying for NOLA, found out today that my bilateral SGAP surgery (reconstruction on right/augmentation on left) will be April 12 in Charleston with Dr. M. Yipee! This has been over 5 years in the making! Thank you to everyone who has reached out to me & provided reassurance and encouragement. This would be a very tough thing to go through alone - but I really feel like I have this wonderful community of women behind me.
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Liz, I am a Jersey girl! (Rutgers Grad!)
Will add you to the list. Congratulations on getting your surgery date and all! I know you must feel really good to have this booked! You and LilMisMuffit will be there just a few days apart! Yay!
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Hi ladies!
Have been reading along but sometimes by Iphone and can't figure out how to post?
Really haven't had much to add. Finished 2 weeks of FT work + traffic x 5 days week. Next week return to my preferred 12 hr days 3 days/week! Yay! 5 day work weeks and 530 traffic in a big city is no fun. Still doing 3 days/week of PT/lymphedema therapy before work MWF. Actually L breast improving some...R breast....dare I say perfect?...My issues primarily truncal lymphedema following whole breast rads last year to L breast to blame...apparently very common, too common.
Anyhoo: re the massage and scar tissue......Spring it's OK go for massage and therapy on the scar tissue. My PT/LE therapist also does ASTYM http://www.gosportstherapy.com/astym.htm As swelling decreases scar tissue is MUCH easier felt.......so we've been doing some ASTYM intermittently to different areas since about week 4? post stage 2 and at 6 weeks post stage 1. I'm a believer........It is almost painful when she gets these tools out and goes to work BUT lymph cannot travel thru scar tissue....and remember your lymphatics are what clean things up help take fluids, etc AWAY from areas...if those pathways are damaged from rads, scarring, etc your swelling, in theory, hangs around and you get congested so you have to have help moving it....primary lymphatics are in the skin................EEKS......This is a whole NOTHER topic that is really not recognized but many women(like us) probably have just don't recognize it because most MD's don't recognize it and are not educated on the topic...the professionals who deal w/ and are educated about it are Lymphedema therapists and physical therapists.
Ok, enough said. Hope all are well. I'm holding out a few more weeks on buying new clothing etc. Did buy a new compression bra this week that has helped immensely.....almost all the hard places in my breasts due to fluids/edema/swelling after being on feet all day, BUT getting better...... Still need more regular exercise.
OK, that's all the Nola breast talk I have for today! Everyone have a lovely wkend.
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PJ, I believe I also have the truncal lymphedemia, I also believe from rads and three surgeries in 1 year! going to LE specialist on Friday next week to learn how to do the massage, bringing DH to learn too! I hope this helps... What scars is she working on in you PJ? My spot is to the side of my left breast, like on side of chest. several inches under arm pit.SNB may not have helped either!0
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Spring,
Let me know what you find out from the LE specialist. I have swelling on my right side of my chest under my armpit, where I received radiation. Some days it is worst than others. Will it get worst after reconstruction? My DIL is going to school to become an OT and her current rotation in Alabama is with a specialist in lymphedema...the problem is, she lives 6 hours away!!!!
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Bennetts, mine seemed to get worse for a bit after each surgery, I think it started with the SNB or maybe the Bilateral MX, then I had rads and 2 more surgeries after that. I am hoping it will get better in time and understanding how to do the LE massage.
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Good morning ladies!
Spring, actually she works on all the scars now after my deluxe stage 2. Abd revision we hit intermitently, but she's worked on my back too since as I told you guys before Dr. D worked on my bum and hips/lovehandles.....I had little scarred areas from the lipo cannula but now the tissue back there is soft and moves and I don't feel the tracts..Yes, time and healing helps too...BUT, really good trained people can feel where you're tight, where there is more scar tissue and part of the whole process is finding a route for lymphatics to carry fluids......the majority of lymphatics are in the groin area and armpits so that's where they usually try to route the flow during MLD. I walk in and tell her what hurts, if anything, where I'm tightest, etc and she usually does some MLD plus yesterday she did some ASTYM on L lower abd(where the drain was....that area was hurting this week every time I sneezed, coughed, had been standing long periods, etc. So she could feel scar tissue there and broke it down w/ the ASTYM. ASTYM is not recognized/practiced by all LE therapists because very purist LE people, esp VODDER trained, as mine happens to be, believe gentler is better. Aggressive deep tissue massage MLD is not..... honestly ASTYM is not gentle... BUT in theory if you take into account the scar tissue blocks lymphatic flow then it makes sense to combine the 2 therapies.
After listening to my girl talk about the training, rationales for one thing, or the other I think I understand why this stuff may not be taught in medical school, some theories contradict.......I feel lucky in having found my girl because she does look at things from a broad perspective and is very knowledgeable on A and P and as a physical therapist. We've been now focusing on L breast lately, because to me it is the most worrisome to me and end of last week I was pretty sore there.....but it was the first week of work and I'd been changing up bras/compression etc, etc...Seems like in the last week I've finally got the right fitting compression bra and routine down PLUS thursday made 6 weeks so time is also always good. BUT she does believe that now the issues are more from lymphedema than post surgical. The underneath breast area/incisions/from the lift she also did some ASTYM this week...... YES, I had the hard areas esp on L sort of lower outer side...which could have been some more dependent edema from gravity, these always feel better in the am....and my L internal(near cleavage) intermittently feels firmand has that orange peel look....after stage 1 it was worse....and some of that was due to volume(pre stage 1 and really post stage 1 I was an overflowing DD pre stage 1).....Dr. D saw the peau d'orange then at stage 2 pre op and he did work on the near cleavage area....he really also believed most was due to volume so when he contoured and lifted I came out smaller(YAY) full C small D....and that has helped a lot.
Bennetts, my issues to L irradiated breast/axilla were there before I reconstructed but I had met my LE therapist when I had seroma at lumpectomy tract and cellulitis to the breast about 5 or 6 mos post lumpectomy and rads. The infection cleared, we got things back under control and I got a huge education on the topic. I questioned then if the recon would make it all worse as well. Esp since this was when I was thinking I wanted to proceed w/ bilat mastect/recon. The general consensus was if you get it under control going in it is definitely doable. There are plenty of things you can do to keep it in check and some things you shuld avoid. It's very difficult to get the info on the topic from most breast surgeons/ recon surgeons. My local recon guy explained to me that I would not have further problems because they wouldn't be manipulating the axillary nodes. Most LE therapists will tell you it is disruption in lymphatic pathways that is more to blame than SNB in women who've had 1 or just a few nodes removed.
Have a great saturday!
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Thanks PJ, I will ask about all this on Friday when I see the therapist.
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Hi again ladies, I am staying low key today, either severe allergies or major head cold. Gray and dreary outside so my computer is my friend today so is dayquil and nyquil tonight...so may be back several times!
Those of you describing swelling, axillary pain/fullness....if you google or do a search on truncal lymphedema you'll find several sites that describe and have pictures. I knew I had the problem despite my rads onc denying it. I guess the good news is it is treatable and there is no reason to suffer, be uncomfortable or think you're nuts. I guess I am more sensitive or had more damage, obvious signs, literally looked just like the pics on some of the sites so kept pursuing.
There is another section on BC.org on Lymphedema and a couple of LE therapists / survivors are on a lot and usually more than willing to share their knowledge.
http://www.lymphnotes.com/article.php/id/461/. This article states 80% of women who underwent BC treatment may develop truncal lymphedema yet it is very undertreated, and underdiagnosed. At any rate there are things you can do. The right bra and appropriate compression minimizing tourniquet effects make a huge difference for me.
OK, enough on that. My LE therapist continues to tell me I made the RIGHT decision going to Nola.....I guess they see so much bad work. Really looking forward to getting back into workout mode, another reason I picked my therapists they're huge into that as almost all are PT's.
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(((((((Girls)))))))))))) I have been in the hospital the last week with chemo complications. Seems the diarrhea and nausea had me very dehydrated, and I went into acute renal failure. Been quite a week! but, no permanent damage, and I think we are gonna try 6 weekly treatments of taxol and finish the year on hereptin to limit future side effects. Not sure if I will EVER get caught up with reading here, but have a week at home before 'i go back to work, so will try.....in meantime, (((((hugs))))) to all and welcome to the new ones You;re at the right place for help and support!
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Gin!! Scarey times, no? I'm glad you're doing better and that your kidneys are going to be okay. What a mess. Rest up!!
Anne
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Greetings
Is there way to do a search on topics already discussed in this thread? I'd like to reread some posts that I remember from weeks ago. Thanks.
Margit
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Margit...I think if you type in some of the key words into the search above, it may bring up the areas you are looking for. Good luck!0
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Gin! I am sorry to hear about all this! but glad to know. Anything we can do for ya? Love and prayers my dear! Keep the faith!
Margit....don't know? if you can specific to the thread? but not sure.
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Very Sorry to here this Gin!
Good to hear you are doing better.
Margit, I dont think you can search a specific thread. You can use some keywords in your search & search only in breast reconstruction.
if you remember who posted what you are looking for you can also add that in the search in member name.
Hope you can find what you are looking for.
Pam
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ccbaby did you get the glue off? I'm thinking in the shower w/ warm water running work it off slowly gently rolling w/ your fingers.
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Greetings
Yesterady, when I washed my hair in the shower, my arms pushed my new breasts together. I was so astonished at how my new breasts moved, I kept doing it again and again, laughing and laughing to simply feel what real breasts are like again (after 20 years of implants that felt like tennis balls strapped to my chest). I tried to desribe it to someone, but I guess this is a sensation that can only be understood by someone who has not had breasts for a while.
.I am finding week three post op hard. I have absolutely no reason to feel depressed, but do. My hip drains put out a steady 180; I have visions of having them for six months. I don't feel like I am pushing myself too much physically, but have little patience for being so tired. I have wierd body issues which are probably side effects of medication, like fluid retention in my ankles, which is probably due to the pain pills (they ruled out blood clots and other issues the other day in the ER) and repeated Raynaud's syndrome in my fingers. My major pain problem is that I pulled a nerve in my left buttocks a week before surgery, and can't really do any rehab for it yet. So instead, I am whining to you, which is not like me and makes me even more annoyed!
This is a place I feel safe.
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Margit~ I hope you start to feel better soon. I can only imagine how it is to take a shower and have squishy boobies again. Soon hopefully real soon.....
I leave for NOLA tomorrow afternoon.
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PlainJane...No, just a little bit of the glue comes off at a time. Thanks, but I tried it in the shower and that didn't seem to do much. I think the only thing that may help is rubbing alcohol, but I am afraid that might be too drying to the skin. Did everyone else's just peel right off?
Jamie....Have a great trip tomorrow and keep us posted!
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Margit...It is really OK......happy you had the non tennisball breast experience. There is a lot going on in your body....those flaps are trying to vascularize more and get used to their new home. So even tho you may not feel you are consciusly doing a lot your body IS. I think 3 weeks post stage 1 was when my adrenaline rush was wearing off but I'd overdone framing and hanging pics and had to go get fluid needled off my breast. Then I was just really tired for several weeks esp since I had to scale back exertion. I finally turned a corner at 6 weeks...some here say 4 weeks is when they felt better but you've been thru a LOT. Keep taking your vitamins and take naps when you need. There is a LOT going on you can't see. Prop those feet up when you can. You're not short of breath or anything right?
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Jamie, very exciting!
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Christy~ I had glue from my kidney surgery and I finally had to just peel it off. It was dirty looking and it wasn't coming off. Scared me when the surgeon came in and just started peeling it off...
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OK Ladies - I am ready to head to NOLA on Monday - I got my mani/pedi today - and when my tech asked "You want flower - only 5 dolla extra!" - I replied - "no, I don't want a flower, but I do want boobs!!"......So, I had her draw 'boobs" on each big toe - complete with Rhinestone nipples!! Just in case Dr. S forgets while I am there - all he has to do is look at my toes and he will be reminded!!
xoxo
LouAnn
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Louann~ I love the toes
What time is your appt. scheduled with Dr. S on tuesday ??0
