NOLA in September?
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Ha, ha....Dragonfly and Nordy. I forgot to mention that I live in Naples, FL which despite tremendous growth of younger families in the past ten years is still viewed as a retirement town. The medical supply store I went to for the sleeve was well organized to take care of people over 65 but not under. She told me they are not set up with ins companies to cover sleeves however she could give me a form to send in to them. I told her how ridiculous that is and that don't they think that women under 65 get breast cancer? Anyway, she was embarrassed and said there was nothing she could do. You shouldn't have that problem Dragonfly. You should be covered.
I opened my mountain of mail today after being away for so long and got several checks from BCBS for my lymphedema massages. This time they reimbursed me for more than last time! The codes are the same. Who knows why....
Take care ladies. Rest and heal....
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Hi Ladies, has anyone had any experience with hernias at site of abdominal incision? Is it something yu had checked out at your regular doctor and how was it fixed?
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Can anyone give me any info related to possible hernia? I just need some assurance to not worry.
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Has anyone ever had problems setting off the door alarms in stores because of drain tube? Today I sat off the alarms going in and out of 3 different stores. I thought it might be my cell phone so I left it in the car going into Kmart and I still set off the alarm. The only thing that is different for me is I still have a drain in my hip. The kid at Hibbett Sports laughed when I walked in and it went off. He said I was different stealing before coming in. lol!
Tuesday will be 6 weeks with this last drain. Is this normal?
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Just wanted to add to the lymphedema garment/insurance issue that not all insurance will cover garments, and very few cover them 100%. Yes, you need a prescription in order for insurance to pay (if it will), but many will not. Medicare, for instance, will pay for therapy, but not for garments or bandages at all. It doesn't matter that the Women's Health and Cancer Treatment Act includes lymphedema -- they simply don't pay.
If you're on Medicare you can appeal with the help of the National Lymphedema Network's Activist, Bob Weiss. He gets about 60% of appeals to pay, but it takes two full years. So -- not much justice there.
If you're not on Medicare and your regular insurance doesn't pay you can mount an appeal. You should include some of the recent lymphedema studies showing the medical use of garments, a complete copy of the Best Practices for Lymphedema document, plus copies of the Women's Health Act, plus a reasoned argument of your own showing why they are part of proper medical treatment and how it affects you. Be sure to emphasize that without compression you are at serious risk for major infections that will require extremely expensive hospitalization. You will also need a letter from your doctor explaining the medical necessity. Have as much documentation as you can and take it all to your doctor's office to fax to your insurance company. If YOU send it in they are not required to read it all. If your doctor sends it in they have to read every page.
The more, the merrier. It still may not work, in which case you'll have to follow the appeal process clear to the top level.
Takes a lot of fortitude, but we're nothing if not STRONG women!
Onward!
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mamaluch- I just had my hernia repair done Thursday, and was discharged yesterday. It showed up in my lower left abdomen after stage 1, behind my incision, equally above and below. I thought it was a seroma. I sent photos over to Celeste and Sullivan, then went to a local PS to look at it. The local guy did an ultrasound and tried to drain it, but could not get fluid. At Stage 2, Sullivan looked at it and told me it was torn fascia, which he repaired an edge of it during Stage 2. Lying down, it cannot be seen, and he simply did not get the full width of it taken care of. So.....here I am with a Stage 2 again. Looks like he did a great job, and I was able to get a bit more lipo in a couple spots which were needed. That's my short story about a hernia. I don't know if it was classic or just a hernia-appearing spot, since I'm not a medical person. Sullivan only spoke with my dh after surgery, so I'll see him on Monday. My dh cant even remember anything Sullivan said, so I have no idea at this point.
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Nordy, I am so sorry about the infection, I wish I could help in some way, I hate it when things do not go well or even as expected with the surgeries we have had to endure.
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Hi ladies. I haven't posted here in a loooong time. Dr, M did my stage I in Charleston, but I do like to see what ya'll have to say on this thread. I'm just curious why the drains set off alarms. My drains were all plastic/rubber. No metal. Do the NOLA drains have metal?
Hope you are all doing well and best wishes to all you that have surgeries coming up and also to those of you just finishing up.
My stage II is back in Charleston on Dec. 3rd.
Linda
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Dragonfly~ Oh this is going to sound horrible but my nipples are hairy....lol... I know it is a good thing because my nipples have a good blood supply but it sure is ugly IMO.
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ha ha i know, hairy boobs or nipples are not sexy lol!! I took my tweezers and was plucking them out while watching tv.
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Hi ladies,
I breezed thru about 3 pages and need to go back and re-read BUT MOSTLY...I came to share.........sorry-YES- another all about me!
Too many of you know I am single and just turned 46(YIKES!).
OK so for the happy endings CRBS stories. I went on a date tonight......It was awesome. First GREAT date I've been on since before all the BC stuff started 2 yrs ago. We've talked at length. NO I did not volunteer the BC/recon info....JUST I did allude to the fact I'd missed seeing friends last wkend....Sniff sniff....still not over it....NORDY there better be a layover in Big D!...ok back to my date-SOooo We started talking about exercising, etc and he asked "If it's not too personal what type of surgery I had".......So I told him....because every other person I've told(who was interested in me) bailed- I was convinced it was date repellant.....something about the word mastectomy freaks many people out......He was great.....said he was NOT freaked out. One of his sisters and his mother died of breast cancer and he didn't know my type of surgery existed...He WANTED to hear more w/o sounding weird........ANYHOO.....Just ......Part of why I DID ALL this to start w/!
1. To give me longer BETTER quality of life
2. To have the BEST most natural and not TOTAL obvious/disfiguring recon.
3. To hopefully(since I was LUCKY enough) having had small early precursors delay- BYPASS the beast!
4. To be able to look/feel as NORMAL- or BETTER!!!! than normal the next time I whip off my top!
NO I did not whip off my top....(yet)BUT! He is Soooo nice, so handsome, so sweet(gotta love the infatuation stage!)-Nonetheless we're both PAINfully honest! More later chicas- who doesn't love some romance.......watch Ask Dr D.....I have something good coming for him. Tellin ya...feel more confident naked now than before SEpt 09 in Nola....and that's where this all started rigfht?
OK enjoy your extra hour of sleep....Thankd=s again for the love, support and EVERYTHING...be happy w/ me! xoxo,jjd
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Yay! I am so excited for you! Dating after mx and cancer is SO hard. I am so glad you are having such a positive experience!
So, I am reading all these LE posts and am wondering if I need to get a little more demanding with my PT, whom I love and has been doing a TON of work on my fibrosis and brachial plexus issues. But she does not seem at all concerned with me having a sleeve or a gauntlet. She did measure me for one, but only after I asked because I was supposed to fly. She is LANA certified. Ugh. I'm noticing that my left upper arm is tighter in clothing now. And it looks like I need to call my doc for a script so that my insurance will pay for a set. I already checked and they will and I am at my maximum out of pocket for the year. Hmmm...I see her on Wednesday and will ask.
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How many weeks is normal to have a drain left in?
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melindastn...I had Stage 1 DIEP in Sep and had one hip drain that stayed in 6 weeks. It was still draining 45-75 cc, but had to be pulled at 6 weeks because I got an infection. Then 3 days after it was pulled the fluid accumulated and my abdominal incision area was so tight, I felt it would just pop open. Ended up having a seroma and having it drained. Then because the drain had just been pulled and that hole hadn't closed completely, my Dr was able to just gently apply pressure and a LOT more fluid came out that hole. Probably would have been better to keep the drain even longer, but I suppose with infection they wanted it out. I know it's such a pain to have it so long.
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hhsorry am havingg o use my phone to post and I,m really bad at that Waned o say hi and how wonderful the NOLA teaam has been. I was discharged yesterday but still havesome bathroom issues so will have to stay on top of that. So far I am pleased and look forward to healing and lesssweeling.
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I wish I had my laptop here. Can not post from IPad and the phone thing drives me crazy. Just wanted to say hoow much I enjoyed meeting so
many of you! What a treat that has been. Take care and hope to be back soon0 -
Hang in there, Journey!!! I'm glad you're recovering. Hit up the stool softeners or laxatives as hard as you can stand it. That's always a horrible issue for me!
Jane--what an uplifting story about your date. Enjoy your time with him.How nice to have someone who "gets it"!!
Anne
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Jacee, Guess I better just be happy that I have not had much of an issue with it. Last night for some reason it hurt for the first time. I ended up on the couch sleeping. Maybe it will wear itself out this week.
Journey, Glad to hear you are doing good. My prayers are with you.
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I had one hip drain for about 5 weeks. I didn't think it ws ever going to go away, it never did get low like to the 30CC they say. It was always at 40-45. Finally they said to pull it and I had no problems.
Trishia - why do some PT people not suggest the sleeves, even when asked about it? I just don't get it! My PT person is so awesome and can get the swelling down but I can't always do it myself, nor am I always able to get in to her! I'm going next week as well and going to demand to be measured, my breast surgeon here will write a script no problem.
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kcshreve- Thanks so much for getting back to me. Was this hernia ever painful.? I am trying to wait until tomorrow to see my regular Dr. and then call the center. Did you ever have any pain with it? I thought at first the lump was swelling but then I starting getting some sharp pain in that area and I wasn't sure it it was caused by adhesions or something else. It does seem to be worse if I eat a high fiber meal. What was your experience with that area as far as discomfort or pain? Thanks so much for sharing. I feel I have healed well from stage 1 but when it's internal it is so hard to know.
I have stage 2 Dec 2 so hopefully it can wait until then to be repaired.
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mamaluch-Between St 1 and St 2, I noticed the hernia-area hurt more as the day went on, very achey and sometimes very tender, so I wore the binder all the time during the day for support. Had to call Celeste for 2 more, since I wore them out. At St 2 when it got a bit of repair, it was a bit smaller and less achey, but always bothered me, especially if I did any lifting more than about 5 pounds. This time Dr S put in a Strattice mesh to support the entire area, which is far more than he did at St 2, so I'm expecting good results. I did not notice any discomfort connected to food at all, only connected to activity. Also, I developed lymphedema, which adds to the overall swelling situation. I found very gentle, light massage over my scar was helpful, but never directly over the hernia area - to each side of it. That massage only relieved symptoms slightly, since the real reason was deeper. Are you using the binder at all?
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Journey, have you been able to get up and out yet? Your location is great, and the weather is perfect! Journey and I are at opposite ends of the French Quarter, so nowhere near each other. You can catch that red Canal Street streetcar, which is just outside your hotel all the way down to Cafe DuMonde, if you're wanting a sweet treat of beignets. Thinking of you and hoping you can feel better pronto! When is your post-op? Mine is at 1:45 Monday.
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Ginny - how are you?
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kcshreve- I had stopped wearing the binder a few weeks ago. I just thought i was only to wear it for 6 weeks. Anyways, I will go back to wearing it until I know what is going on. I have also been exercising but I also thought at this time it was ok as tolerated( I am a fitness instructor so not like I am starting a program for first time. I don't seem to notice it as much when teaching but that could be endorphins interfering with pain level. It's mostly toward end of day or when I first get out of chair or deep couch. Thanks for taking time to answer my questions and concerns. I hope you are all set now that Dr S put the mesh in. Please keep me posted on your progress. All my best to you.
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mamaluch - I had looked forward to getting back into shape, but whatever exercise I did definitely exacerbated the hernia issue, so I had to step back. I am hoping, now, after a Stage 2 and a St 2B that in a few weeks I can look at the exercise issue again - it's been so many months!
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kcshreve- Did u have to pay the same for stage 2b as stage 2? How long did they say you need to wait to start exercising after hernia? I would think it would be as long as after stage 1 or more maybe to make sure it healed all the way. I hope you have a speedy and full recovery!
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Ginnie, are you there and okay?
Here are ladies coming up next week:
- Nov 9 - Elaine536 - Nola.Stage 1 PBM, Dr. Massey.
- Nov 10 - foobs - Bilateral Stage 1, NOLA.
- Nov 11 - Sheridangirl - Stage 2, Dr S. St. Charles Surgical.
Someone asked if NOLA drains are plastic, yes they are, always rubber-ish. Not sure how that alarm got set off! Maybe it was the liquid? ha!PJ, that is one AWESOME date! Maybe this is the one! Given he's had a family history so close, he will think you are one smartie going to NOLA! I am so happy for you. Keep us informed...Trisha, you need to go to an LE therapist and get your arms measured. They will compare one to the other, taking into account that your dominant arm can be up to 10% larger. This is how they can tell if you are getting edema there. When I went to my place, even though I had just had my nodes out (and had no symptoms yet of LE) they fitted me for a sleeve, and told me to wear it when I fly. I hope you can find someone to help you.0 -
Springtime- that's where my frustration comes in. i've had mild LE and 22 nodes removed for over a year now. Never once has she measured me for a sleeve. She has done measurements to monitor swelling and if it's going down but that's it.
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Does anyone in NOLA do hysterectomies? I have a friend needing stage 2, but a hysterectomy as well!
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Spring, I do see an LE therapist. And my LE is in my left (non dominant arm) and my upper left arm larger than my right arm. I had to ask about a sleeve. And only because I read on the LE forum about the need to wear one when you fly. But it seems that you have to get a doc to write the rx, not the PT, for insurance to pay for it.
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