GRRRRRRRRR I HATE LE..........
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Just bumping the GRRRRRRRR thread in case anyone has whining/bitching stuff to add.
Also want to wish MavericksMom the absolute best possible outcome from surgery today!! Good luck and check in when you can, MM!
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Yup - I too am thinking of Mavrick's Mom.
I don't allow docs to use my arms for anything. Unfortunately, not allowing shots in my arms means I have to go down to the medical center to my PCP. I used to have a pharmacist at Kroger who would do the deed in my thigh or hip but their corporate office said NO MORE.
Got my Covid Bivalent booster 9/29 in my rear end.. The only side effect was exhaustion. I slept for 18 hours straight. Got my Sr Hi Dose flu vaccine today - again in my butt. The injection site is sore but that's all.
Wish I could find a light weight vacuum that works on thick, whole house carpet. The "brooms" aren't built for heavy duty work. I have two vacuums and both are too heavy for my LE arms to manage without residual pain. So I don't vacuum as much as I should.
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I am still recovering from my mastectomy in Oct. but now thinking again about the "mapping" of my left arm and if I will be billed for it due to Medicare.
Anyone here have "mapping of an arm" done? I know some of you have had lymph node transfers done and Medicare paid for it, even though they are notoriously against all things lymphedema. Not sure what I will end up doing. I still have time to discuss it with my doctors.
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Mavricksmom - I just responded on a different thread. I have not had mapping, but aside for compression bras & sleeves & gloves, everything I've had done for LE was paid for in full. I do have traditional medicare w/a medigap policy.
My implants are 11 years old. Supposedly replacement "may be needed" at 10 years - but my MO just checked them last week & doesn't see any problems. And I do have a breast ULS every other year. I'd love to have the sagging left side 'fixed' (I had a recurrence on the right & radiation made it more perky) but my PS can't guarantee it won't exacerbate the LE on that side.
Hope LW will weigh in. And Binney - how are you?
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MavericksMom--did they do the mapping during your surgery? I had mapping done with my mastectomy, so that the surgeon could see the nodes they didn't want to disturb, as well as mapping where good connections could be made to a vein (lymphovenous bypass). All of that was paid by Medicare (advantage plan) because I had met the $3,000 annual deductible.
If the mapping is a separate procedure I'm not sure how that would be billed/covered/paid. I had planned to see a plastic surgeon for a consultation on additional LVA connections but that appointment was canceled. I still don't know if Medicare will pay for additional bypass surgeries or mapping of viable LE channels. Hope you're recovering well.
Hey -2!!! Brrrrr, it's cold in Houston tonight!!
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MavericksMom--OK, I just saw your post on the other thread that your PS wants to do the mapping during the exchange surgery. Ask the surgeon if they will code the mapping so that Medicare will pay for it. I believe they can use certain "venous repair" codes that will be paid as part of the surgery. Of course what I know about medical billing will fit in a thimble, so take what I say with a grain of salt (and a margarita). I know they did pay for my mapping as part of my mastectomy. They should be getting authorizations from insurance before proceeding so just make it clear that you want to know whether it will be covered. Good luck.
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Yup LW - I dug up all my plumarias yesterday for the winter. Since several of them are over 10 ft tall, it was a real chore.
Oh and since this is an LE thread, I have to shamefully admit that I neglected to wear a sleeve. Maybe some new cording today but I'm tryint to massage it out.
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PLEASE CALL YOUR REPRENTATIVES TODAY TO VOTE YES ON THE LYMPHEDEMA TREATMENT ACT WHICH IS UP FOR A VOTE TODAY!!!!!
ANYONE WITH LYMPHEDEMA WHO IS ON MEDICARE, LIKE MYSELF, NEEDS FOR THIS TO PASS! THIS WILL HELP EVERYONE WITH LYMPHEDEMA!
MORE INFORMATION: LymphedemaTreatmentAct.org
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The vote got pushed to Thursday, obviously not on anyone's high priority list. Nothing changes, money goes to money, and everything is about money. Pathetically sad, but true!
I decided not to try to advocate for anything Lymphedema related anymore. I have too many other things on my plate. I have lived with lymphedema for almost twenty years, most of which I did not wear a garment or get treatments/therapy for. I have learned to just live with one very large arm and hide it in larger clothes with long sleeve year-round. Has worked for about 12 years so why change now, why bother mapping regardless of whether or not Medicare will pay for it? Just one more invasive procedure.
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minustwo - My implants are about the same age as yours. You said that you have ULS done every other year. Is "ULS" ultrasound and does your MO check you or do you have to go back to your plastic surgeon?
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Hi CowGal - Actually I review the results with the radiologist doc who supervises the scan. He is the one who originally diagnosed the first cancer after my OB/Gyn sent me to him. And he's the one who recommended both breast ULS and breast MRI several years after the last treatments I had one MRI and he said no need for others - just PRN. But he did say breast ULS every other year. He is no longer at a hospital where I have any other business, but every one of my docs says he's the best in town. My new MO writes the orders since most of my other docs have retired.
My MO suggested I go see the PS if I have any real concerns, but she said she doesn't feel any problems.
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Hooray! The Lymphedema Treatment Act passed the House today! It will have to be passed in the Senate and signed by the President before it becomes law.
"November 17, 2022
WASHINGTON, D.C. -- Today, the U.S. House of Representatives passed landmark legislation, H.R. 3630, the Lymphedema Treatment Act, which is co-led by U.S. Rep. Mike Kelly (R-PA). The bill will ensure Medicare Part B coverage of doctor-prescribed compression garments, the clinically recognized treatment for lymphedema. The bill, which was reintroduced in May 2021, is led by Reps. Jan Schakowsky (D-IL) and Buddy Carter (R-GA) and co-led by Representatives Kelly and Earl Blumenauer (D-OR). The bill passed by a vote of 402-13."
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Thanks for posting piper. HOORAY is right!!!
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It’s good but far from done. This must go before Senate for a vote before Dec 16, the last day Senate is in session. Then get signed by President. I am not holding my breath that this will happen, but I hope it does. If this doesn’t hthey go back to square one next year!
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I am 5 1/2 years out from my bilateral mastectomy. I had ILC that had gone undiagnosed for many years despite my annual mammograms, and 31 lymph nodes were full of cancer. I went through chemo, radiation, and reconstruction and to this day I feel like there is a band around my chest that is constantly squeezing me. I have lymphedema on my right side, and I do use the flexitouch pump every single day. I can't really tell if it's helping much. And I did go to PT for quite awhile but stopped when covid was so prevalent. It doesn't take much to trigger constant muscle spasms where I had radiation. I got them at every PT appt by simply lying on their table...I get them when I'm getting in/out of bed...when I'm getting in/out of the car...getting dressed...or even just sitting. Prescription muscle relaxers have not helped. I am so miserable and simply can't deal with them anymore. Does anyone have any suggestions?
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chucksmommy: I have LE in my breast and nerve damage that causes weird pain where I had radiation. I take gabapentin for it which works pretty well. You might ask your doctor if you could try it to see if it helps.
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Chucksmommy, I get the spasms, too - completely get what you're saying. Swimming works for me, but not everyone enjoys that or has access to a pool. I also try to find the time to do stretches - one thing that really helps me is lying on a foam roller, with it vertical under my spine, and stretching my arms. The other thing that helps is massaging my radiation side with a tennis ball or a small vibrating massage ball. Easy to do at night while watching tv. I'm also going to ask my physiatrist whether hyperbaric oxygen treatment might help. Wishing you the best.
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Hi all, I hope that law passes, fingers crossed. It’s even hard to use private insurance for LE garments. My Oncology Rehabilitation doc is having me try eating 2 - 3 Brazil nuts per day. Selenium in the these nuts may help with LE according to a clinical trial. They taste good to me so I am eating them everyday starting this week. Don’t eat more than 2-3.
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Praying the Lymphedema Act is part of the Senate End-of-Year Bill and passes! So close, yet so far away. Could happen as early as tomorrow morning.
see: lymphedematreatmentact.org for more information. This is so important to so many of us! I for one can't wait another year!
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Good news! The Lymphedema Treatment Act is included in the end of year Senate Bill!!!
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mavricksMom - Thanks for keeping us updated.
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Y'all, we just got the best holiday gift we could imagine--our bill passed, the President signed it, and we will soon be able to receive insurance help on our lymphedema garments here in the US.
Next step, helping the CMS get the wording right in their new guidelines for insurance companies. (I'm hoping they'll specifically mention coverage for compression camis!) And after that, we'll have to help our providers and fellow lymphers find out this new provision is in place and how to access it (whew--never ends!!)
Kind of mind boggling after all these years, and right at the very last minute before Congress was dismissed for the Holidays and we'd have to start from scratch with a new Congress yet again.
So--CELEBRATE!!!
Hugs and happy Holidays,
Binney0 -
Great news at last!!
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Yes it was!!!! I made calls to my Congressman and Senators but wasn't getting my hopes up until it passed unchanged in the end of year bill.
There is still a lot of work many must do, according to the wonderful people on LymphedemaTreatmentAct.org, but finally a WIN for those of us who have suffered with this way too long. My doctor wants to remove some fat out of my arm after which I will need to keep wraps on 24/7 the rest of my life. Before he does that he plans to do mapping of that arm when he does the exchange surgery on the breast on the opposite side. The results of the mapping will determine if the surgery on my lymphedema arm will be possible or not, assuming my insurance will cover it.
When I went on a Medicare Advantage insurance, I refused therapy years ago because I couldn't afford the compression garments and Medicare refused payments. Now, even if I can't have the surgery my doctor hopes he can do for me, at least I will soon be able to get therapy and compression garments.
I am curious if any of you had the experience I had when I last wore garments, it is something that I kind of forgot about. When I wore compression garments years ago, I got really tired of people asking me what happened to my arm. I tried to be kind in my answer because I didn't feel they were trying to be rude, just concerned. Yet, there were times I just didn't want to answer, and I wished they would not have asked, because I was trying to move forward with my life and lymphedema never let me forget about breast cancer.
I hope I remember now, what a blessing it will be to be able to wear garments again, and not get annoyed when people ask. After all, it is a good opportunity to educate people about lymphedema. Also, those feelings happened after I had breast cancer the first time and 24 lymph nodes removed. Now, after two additional diagnosis's and two mastectomies, breast cancer will forever be part of my life and I guess I am used to that fact now. Instead of trying to forget I ever had cancer, I feel thankful to be alive, and will be thankful that wearing garments won't but me debt!
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I hope this link works for anyone who is interested in the Lymphedema Treatment Act.
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Sorry, I had to delete a link to the lymphedema Treatment Act site because it was stopped by a firewall. Thought it woud be helpful to some. Sorry it didn't work.
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mavricksmom - At least we know it's out there. Thanks for keeping us up to date.
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I received a great FAQ list from the LTA group; it answers a lot of questions about what is included in the Bill. For one thing, coverage will not begin until 2024; it will take that long for Medicare to get all the details finalized. So anyone expecting to get garments covered in 2023 will still be out of luck... no "retroactive" payments will be made. Here's a link to the FAQ (frequently asked questions)... LTA FAQ Document
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I received that information too. At least it’s going to happen.
Not sure I will go back to wearing garments anyway as I don’t think Medicare will pay for the surgery I need. Regardless, I am still having mapping of my lymphatic system done when I have my exchange surgery. The results of that will tell if future surgery for the lymphedema would even be beneficial for me.
art of me says I should leave well enough alone.It does totally suck for those on Medicare who need compression garments now and can’t afford them.
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Hi all, for some reason mapping was unsuccessful during my surgery, never got a straight answer from my surgeon. My lymphedema in left arm is getting worse despite day & night compression, manual drainage massage, excercise etc. also more painful & uncomfortable. My fingers also get numb. Yes people ask me why I wear a sleeve or others think it’s for sports. Hang in there all!
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