NOLA in September?
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maggie - after the ab incision was lowered I had tne hip drains for about 2 weeks.
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Has anyone had the nuclear medicine test for lymph flow that Dr. M orders for patients who already have lymphedema? If so, can you brief me on what to expect? I didn't have sentinel node biopsy, but it sounds like the prep will be similar.
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I had it done it Chicago last year before my vlntx surgery. They take 4 needles and inject them 1 at a time in each hand and foot between the thumb and forefinger and big toe /2nd toe. Then you let the stuff circulate and get the scan. Burns bad when it goes in but then it's over quite quickly.
Maggie
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Kim_L, updated your surgery to Sept 25 per your PM.
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Thanks Springtime! I almost confused myself with the preop vs. surgery dates.
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Mary, I wish someone had told me about the test. I had EMLA creme for my SLNB and I didn't even feel the injection. I'm wondering if they should use that one hour prior for this test as well. It is certainly worth asking. I have read several studies on the use of EMLA creme 1 hour prior and my Breast Health Navigator has studied patients over 3 years. EMLA is a prescription topical creme you can apply yourself one hour prior to any injection or port access, etc. My pain using this creme was a zero. I did not know to ask for it for the test at Touro.
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Good advice! I've had EMLA for some kind of dermatological procedure in the past. None on hand, but I'll try to ask for some when I get there. I've never had this test before. I'm a little nervous. (Frankly, going to be a little nervous about it all, I'm sure!)
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well ladies. Today is my last day home and then I fly down to NOLA at 5am Monday. In true last minute fashion... I will be getting there two hours prior to pre-op appointments. Yikes. Still have a long, long list of stuff to get done today.... The most of course is house cleaning for my perfecto it's sister who is staying with my girls while I am gone. She has already commented on how clean the house must be... Sigh ;-(
I'm still waiting to get nervous.... Since I know I am not excited about stage 1. Perhaps I will be excited when I am going for stage 2 ;-). In the end... I think I'm just relieved to get this going so I am closer to it hopefully being a distant memory. But long road to get through first.
Scheduled two calls for work during my layovers and offered to get a few kids set up in a gymnastic class before my surgery. Difficult to hear last night that other people took over the tasks and told me to concentrate on healing instead. I think I am most nervous to be doing nothing. I work 16 hour shifts and run my girls the rest of the time and sleep like 2-3 hours a day. Never turned on the tv in bedroom in 5 years and have read a newspaper, watched tv show or even time to search internet for current events in years. Worried about how I will handle all this down time
Thnx to everyone who has let me read and do a little sharing over the past few months. Has really helped me mentally prepare for the road ahead and stay ok with my decision to do the DIEP instead of implants. Let's just hope it all works out. ;-). And then I might really be able to participate in the conversation after next week.
Ok... So I cut and pasted this from another board I am on... If anyone noticed...
See you in NOLA koalabear !!!!
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kb - now is the time to relinquish control. Have a good day with your kids. If the house doesn't meet your sister's standards - let her clean. They are her standards not yours. Give yourself permission to rest and heal. If you push too hard your body can't do what is best. I think this is the most difficult lesson for all of us "a" types - to just let go and know that others will step in - doesn't mean we are any less valuable. We are all here for you! BTW - had implants for 27 years - so loving my DIEP!
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Kb33-Dr T did my Stage 1 bilateral hip flap about 3 weeks ago. I never really had any pain but it does wipe you out(tired)! Take it easy and you will be fine. Everyday you will feel a little better. The nurses are wonderful! They will show you everything you need to know about post op care. Good luck with your surgery, you will do great!!
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Mary - ask your PS to call some EMLA in so you can have it with you. They will not be prepared if you are going to Touro. Also, you need to apply 1 hour before, between fingers and toes. The test was easy other than the injections. You just have to lie still. There is down time between scans. Take your iPad or some reading material. One time gives you enough time to eat in between, in the cafeteria, not outside the hospital. The gift shop was cute. I would call Touro and ask Nuclear Medicine to fax you the prep instructions. I didn't have them in advance and it would have helped.
Kb33, Marty is right. We have all been there. Do what you can; family is most important. Work will adjust to you being gone. You have to let your body heal. I know you have read some of the complications that can occur with such a big surgery. Please know that strictly following the post-op instructions can prevent some of these. It's so hard to rest! I thought I was just fine and doing very well. I stopped my pain meds because I didn't need them (or so I thought). Two days later I was in the emergency room. I didn't need the pain meds because I was not breathing deeply enough. Use that incentive spirometer for a very long time!!!
TEACHER??? IS IT LIE?0 -
Thank you bdavis and zenful. I had my stage I in Chicago 15 months ago and will be traveling to NOLA for stage II in November. I had a unilateral DIEP with disappointing (and complicated) results. I'm grateful to be seeing Dr. D for stage II. I need to have so much fixed that I'm a bit nervous. I would be happy to post photos if you tell me how. I'd like to feel better about what the end result might be and I'm hoping that by seeing others results, I'll feel encouraged. Please let me know what I need to do. Thanks!
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Diane - the appropriate place to post photos is on the photo sharing site. If you go to the Breast Reconstruction subject area on BCO, there is a fixed post that explains how to get on the picture forum. You will need more posts, though, before being admitted to the site. It is carefully protected to guard privacy. I am sure Dr. D will do a wonderful job for you!
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2 weeks post stage 2c and drains are gone and I feel pretty good. Have been out to lunch with friends and driving again. Not ready for work but still feel like I am healing well.How long until you should sleep on your side after some fat grafting? She filled in above the flaps to give my chest a more natural look and it looks super. hope it all survives and does not get necrotic like before. I can see some big changes on my body after this one. Can't wait til the swelling is gone to get the full effect of all she did this round
Maggie
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feeling.... Sore, tired and bored in NOLA. 20 hours post-op. Have been walking twice, catheter out, contacts back in and I feel ..ok. Have not needed pain meds yet, but I think after my big two loop walk I might try some with my nap. Feeling content and a bit happy that they were able to spare my nipple and ll 4 biopsies were negative. Looking forward to a few days of healing and hopefully some sleep. Thnx everyone for you thoughts.
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Diane, I am confident Dr D will do a fantastic job for you. He is an amazing artist and has seen so many failures, he has probably dealt with everything. I am so happy with my results, and I think you will be also.
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kb33 enjoy being bored for a few days, life will pick up very soon.
Mags I'm glad to hear you see big changes! I waited a while before sleeping on my side and I'm still worried about it. I usually still try to put pillows behind my back and lean a little off my side. Does that make sense?
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Terri - made perfect sense. I actually still do that - sleeping not quite on my side, but not on my back. I waited about 8 wks after 2a to do it. Because she did a lot of work under the arm on the right (side I usually sleep on). After 2d, I only waited about 2.5 wks since most of the side work was done on the left. Hmmm, maybe none of that made sense.
Kbb- glad to hear from you. Take your time. Healing is a inside and outside process. Time is your best friend.
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Dr M said 6 weeks to side sleeping. 3 1/2 to go...but I am not anxious at all
Happy story. Took my daughter shopping for her wedding gown yesterday as she is newly engaged. I started to cry even before she emerged in a white dress. Just knowing that I could have missed out on this milestone in her life had I not done my self exam that day. After several try ons and 2 shops we found the one. When she walked out we both burst into tears and held each other. She cried into my shoulder and said that she was so happy that I would be there to share the special day with her. I will always hold the memory dear to me and cannot wait to see her marry the man of her dreams in February. I really thought that I was going to die when diagnosed and am so grateful for everyday I live and breathe.
Maggie
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Sydgrace and Sassy01, thanks for the PMs! I have added your dates to the list above!
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Thanks, MartyJ. I'm sure he will. Knowing I'll be having stage II at NOLA along with the encouragement and insights shared here, I feel I'm on the right road to recovery.
Has anyone had a bellybutton revision during stage II along with abdominal scar tissue removal and an abdominal scar lowering? I'm wondering how long the FULL recovery might take after that. I developed a seroma in the abdominal incision following stage I and could not even put cloths on over my abdomen for 8 weeks. It took me 4 months to be able to say I felt like I could function somewhat normally. Under uncomplicated circumstances, I'm wondering what I can expect after stage II.
Also, I had a nipple sparing mastectomy. But the nerves were cut and the area is just a flat, flesh colored circle. Would anyone be willing to tell me if their nipple reconstruction/tatooing looks 'normal' if it is only on one side and if you feel like the surgery is worth it? Can they match the original closely enough?
Thanks to all.
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Diane - I had the ab scar removed and lowered during Stage 2, but did not have a seroma as you did coming out of Stage 1. I did have a small place that took 10 weeks to heal after 1. Stage 2 gave me hip drains again for 2 weeks, lots of stomach tightness, but nothing like Stage 1. Recovery was much easier and I was out and about once the drains were gone. I was able to begin working with a personal trainer at 8 weeks. I was fine once the drains came out, but Dr. M wouldn't let me work out for 8 weeks.
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I just had my belly scar lowered 2 1/2 weeks ago. For my stage 1 I had a spot that opened up on the scar due to some fluid collection. Had to wear a wound vac and everything. That spot is where most of the pain is but overall it has been a quick recovery for me. my drains came out on day 12 and I am not quite 100% yet but feel better everyday. I am back to regular activity for most of the day but by afternoon I am ready to get off my feet and relax for a bit.Maggie
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Thank you MartyJ and Mags20487. I am so grateful for your willingness to share your experiences. It truly helps. Good health!
Diane
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Hi there! I am new to this site. I have a question... Did any of you get the periodic stabbing pains with the nerve regeneration? I had my bilateral mastectomy back in January and don't recall that happening. I had the DIEP about 5 weeks ago and have been getting the stabbing pains in the abdomen and left breast for a couple of weeks now. Everything is healthy and healing, so I'm not overly concerned, just curious....
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Sassy, I still get them occasionally in my breasts and I'm 2+ years out. My oncologist says it's probably PMPS at this point, but it doesn't feel very different from what was supposedly nerve regeneration early on. I don't have that pain in my donor site anymore.
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MyDiane, I added your Nov 6 Stage 2 surgery to the listing above...
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Hey everyone! I'm scheduled to see Dr. D. next Wednesday for revisions to my hip flap stage 2. However, the insurance preapproval has not yet been issued! I'm starting to worry this surgery isn't going to happen on time, despite that I scheduled it in February! I naively thought all this bureaucracy would have been settled by now in time for me to make travel arrangements.
Can anyone share their story about last minute insurance approvals or cancellations/posponements/appeals? I have no idea what's going to happen next, or even how I'm going to spend my autumn.
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Kim,
Just give Vickie Hart a call at the Center. I had my DIEP done with Dr. Sullivan in August. I called her because I hadn't heard from my insurance company... She assured me that the thd request was made. After that you should be able to contact your insurance company and get the approval nimber. Hope that helps!
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Hey Sassie01, The request has been made, but now Vickie and I are both waiting for the insurance company to issue the preapproval! I called the insurance company directly an hour ago and they say that the decision is still pending. It's very unnerving, since my surgery is next week.
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