GRRRRRRRRR I HATE LE..........
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Purple......my LE therapists were excellent. Just could not work out hours. I was lucky to get my first one. She iS so highly recommended, you can't get appts. People make them months in advance, and like I said she is only there 2 days a week. Actually her husband is Chief pathologist at the BC center where I was treated. Fantastic hospital. Everything is in 1 building and 15 minutes from my home.
The treatment for LE according to tv last night originated in France. Has been brought here by a Dr. From Penn, in Philly. They take nodes from your stomach, and put them into your arm for breast cancer patients. Google it, you might find it. It is surgery.0 -
123 Penelope - I am so sorry you have issues but here is a place you can get more information about what to do until you see a CERTIFIED LE Therapist:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
I know from experience, that when you first figure out you have LE, there are multiple emotions that go on - anger, frustration, crying, and the dreaded "Why me".. With the help from all these ladies, I have learned what to do and how to keep the LE in control.. Until one of the other ladies chime in, I would like to say "BREATHE" literally... learn how to belly breath.. It helps the swelling. Drink lots of water and elevate your arms when you can.. You will get better *HUGS*
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Penelope, I have a list of LE therapists and clinics in SW Michigan. If you are anywhere south of Grand Rapids and west of about Battle Creek, PM me and I'll get you the list.
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Carol - funny the mention of Battle Creek - I was actually born there, even though my parents were both federal workers in DC. My dad was posted for a few months at the federal emergency planning agency, and that's when I decided to enter the world. And yes, every time I've had to put my birthplace down on some official document, I've gotten the inevitable cereal jokes.
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NatsFan, if they make a joke, you're supposted to respond with something about how being from Battle Creek is grrrrrrEAT!
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duckyb1- I have been talking with Dr Massey about a procedure that she does at NOLA called VLNT (Vascularized Lymph Node Transfer). She explained that she takes lymph nodes from the neck to help restore better function to the affected area. Not many physicians/surgeons as knowledgeable about LE as Dr M. She said it does not cure LE but does often improve the condition and make it much more manageable. When I see her in June for reconstruction I will find out more about this and whether I might be a candidate for this procedure. Check out her web site for more info http://drmarga.com/getting-ready-for-a-vascularized-lymph-node-transfer-vlntx.html
Her office also helped me find someone in my area for LE PT that I'm seeing Friday for an evaluation. Her name is Stacy Blaine and I have seen posts on this site commending her work. duckyb1, I see you are in Drexel Hill, PA. I'm in Hatboro and know there is not much in the area for good LE PT, so I'm very hopeful about Friday's visit.
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Maxine, there is a thread here and girls have posted their experiences on lymph surgery. It might be a good idea to check it out as they have so much experience. We are learning everyday
Personally I am waiting for the magic pill to cure LE but in the mean time I am going to prevent it from getting worse as much as I can.
Let us know about Fridays visit.0 -
Max.....they called it node transplant surgery. It does not cure, but does reduce the swelling quite a bi. I am not anywhere near the size this woman was. It was awful, so someone like me would not be eligible. Even without the garment I am not too bad. Thank heaven's considering no one can get it right......hugs
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ducky
I have heard of that surgery. Some ppl are concerned they could end up with lower extremity LE from it. I would not be willing to take the risk.
I soooooo wish you could get back to your LEist ...even if only on occassion.
Good luck, Maxine!
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My LE therapist is at Penn and told about the LE surgery they would be doing there. He said it's experimental and only for very severe cases. He said I wouldn't be eligible for it even if I wanted it.
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Help! i had my bilateral mastectomy on Jan 17. drains out at 1 and 2 weeks. cancer side began to really swell up on this past friday. called surgeon on monday and he saw me tuesday. had a drain replaced this morning in surgery idk exactly how much they got out n surgery but the draw sheet was soaked when i got up to dress and we have emptied 300 cc since surgery although its slowing down now. now for the weird part-
when the swelling began, i started having trouble swallowing and speaking. i sounded very hoarse and could barely swallow liquids. my surgeon says there is no correlation but! tonight, after the surgery, i was able to eat and speech is better. i googled and found nothing! anybody ever heard of this? am i me
ntal?0 -
GmaFoley Thanks so much I just can't find an LE therapist near me (I have no car and have been unable to drive for many years because of physical disability) and it's very hard to find someone to take me. I don't want to sound like a crybaby or boo hoo me. There is a PT so close to my home that I have decided to go there, I don't have many options left. Will just have to wait and see what they tell me. I have all of the emotions you have mentioned.
Carol57 Thanks for thinking of the list for me Grand Rapids way too far maybe 100 miles. I live in a small town about 30 miles from detroit. I hope I'm making the right decision to go here in town, I just don't know what else to do. Am probably repeating myself from other post's, I have had so many suggestions and thoughtful responses, I just want my arm better. Lori
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Maxine there was one lady in our support meeting that had the surgery. She said it did improve her swelling but now one side of her but is bigger. She still has to wear the sleeves and night garment. Frankly I would not want to take the chance either until there is further testing done. Good luck!
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Some recent articles published in France reviewed results after node transplants there, including some discussion of complications. There was also an article in which Dr. Becker (who pioneered the surgery) explains that the best results occur when the patient has very minimally advanced LE. I think that most of the transplant surgeons --like Dr. Massey--are not talking 'cure,' but improvement.
At the NLN research conference last fall, there were several presentations and debates about surgical treatments for LE. I found it interesting that one surgeon/advocate described a few cases where the surgery 'cured' the LE, but then later on the same patients got LE again after some kind of injury. So...was their LE 'cured' or just the symptoms alleviated? If 'cured' I would think that a subsequent injury would not provoke swelling. There's a great deal that is not known, and actually I am very heartened by what seems to be the surgical community's honest acknowledgment that a 'cure' is not really the likely outcome at this time.
So many amazing surgical procedures have been developed to fix all kinds of bodily dysfunction, so why not a repair for LE? I don't think for a minute that any of these 'fixes' came about speedily and without setbacks along the way, and I think that we are witnessing the development of what well might eventually be a genuine cure for LE. But I'll leave it to braver souls than I, to hop onto those operating room gurneys for now.
Thirteen years ago, my son, at age 15, had lifesaving heart surgery --got a device implanted--within weeks after FDA approval, so I know all about pinning hopes on surgical skill and technology. I totally understand why someone with a case of crappy LE might choose to go the surgical route, but after the long months of deliberation on risks vs. benefits of a new and dramatic treatment those years ago, I don't think I would be prepared to give transplantation a try until there was a lot more transparency than we're seeing now, about outcomes. When deciding on my son's surgery, we were able to follow clinical device trials quite closely, with tons of reporting at our disposal. That's just not true with the lymph node transplants, at least so far. I believe with all my heart that Drs. Becker, Massey, Chen, and others are gifted microsurgeons, and Dr. M is legendary for her care and concern for LE patients. For me, though...I would just need to see more peer-reviewed studies and outcomes documentation.
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Penelope, that makes me wonder about one more possibility for you. When I was researching LE therapists (I put together a resource list for our Komen chapter, covering 8 counties), I learned that one hospital system has a traveling LE therapist who does home visits! That particular center is useless to you, as it's on my side of the state. But can you call area nursing homes to ask if there's a PT or OT with LE credentials who comes by to provide treatment? That might lead you to someone who does the kind of house visits that I know this one therapist does in one of the counties south of me.
If you think about it, LE therapy really lends itself to home visits--no special equipment needed, beyond a tape measure.
It's painful to think that you cannot get help when you live in such a medically endowed metropolitan area. GRRRRRRR!
Carol
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Carolyn, I have not heard of what you experienced, and it sounds very frightening. I hope some of our more expert members will see your post and have some kind of opinion that can reassure you.
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If 'cured' I would think that a subsequent injury would not provoke swelling.
I'm no DR. but I really think that is a simple common sense presumption, Carol. I agree.
In fact, I agree with all of your sentiments that you so eloquently put into your post. After reading the link, I DID see that improvement , but not cure was the likely outcome. I appreciate the honestly in that.
What a great idea for Penelope...that would be so awesome !
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Carolyn - I don't know either. I'm glad you're better, though. xo
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Thank you to all who responded about what to do about cooking/cutting veggies.
I used old gloves tonight and I tried the plastic gloves and it worked much better than anticipated. Thank you for the helpful advice. I'm cooking some cabbage soup loaded with extra veggies. I've become addicted to it this winter.
Thanks again all you veterans out there. What would we do without you? So appreciative! xoxo
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Carol,
Thanks for your clearly explained post on LNT-lymph node transfer surgery, as well as giving your personal opinion which is duly respected. Thanks also for mentioning that:
There was also an article in which Dr. Becker (who pioneered the surgery) explains that the best results occur when the patient has very minimally advanced LE.
I have minimally advanced LE, which is well documented. I had the LNT surgery in December performed by Dr. Kline (who trained with the pioneer Dr. Becker). My thought, too, is: Why wait until it gets advanced? So far, so good. Time will tell especially after my stubborness to physically do whatever I damn well please this hot summer season. (Though radiation damage and pec muscle damage from earlier BMX and implant surgeries have knocked my upper extremity activity ROM level down several notches)
I had my surgery on December 14, 2012. Lymph nodes within a flap were taken from donor site in my left groin, and transfered and anastomized at recipient site in my right axilla since my right arm and chest were the side affected with LE.
I'm curious about the surgeon/speaker's discussion about patients later having an injury and getting LE again. Did the speaker clarify if the patient had an injury to the former LE affected arm, OR, did they have trauma elsewhere resulting in LE elsewhere. As known, patients can have primary LE, or secondary LE (i.e, from breast cancer ALND, or from trauma, injury, burns, etc.).
Ten years ago, my then 36 year old, close friend had an ICD heart device implanted that made a dramatic improvement to her heart function/life -- physically and emotionally. Despite extensive research and clinical device trials and approvals by the FDA, her first two devices malfunctioned without harm (and were recalled), and she is on her third ICD to be implanted in her chest. Regardless, she is still grateful to the researchers and doctors who were dedicated to making this device and surgery a reality.
So even though LNT hasn't had numerous, long-term studies, I made the decision to go for it in hope of improvement for a happier, healthier life after getting beat up by breast cancer and its aftermath.
Will the LNT ever be a 100% cure for LE? I pray so. But, I pray more for the cure for breast cancer, the bitch of a disease that, most importantly, takes away too many lives, while leaving survivors faced with living with numerous and painful side effects from all the treatments and surgeries, one being breast cancer's dirty little secret - lymphedema.
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Amen, Pinkheart!
Will the LNT ever be a 100% cure for LE? I pray so. But, I pray more for the cure for breast cancer, the bitch of a disease that, most importantly, takes away too many lives, while leaving survivors faced with living with numerous and painful side effects from all the treatments and surgeries, one being breast cancer's dirty little secret - lymphedema.
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Does anybody have any suggestions for a compression bra other than Bellisse? I would like to be able to use a different brand and give my skin something different on it sometimes. Thanks
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Purple - there are children with primary LE, born with lymph issues, it would make sense that the therapist would see them after school hours - I just can't imagine there are that many children that would be seen though, maybe she extended hours only for them or something.
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True enough Linda...but yes, it seems she shou;ld be able to get an appt as well!
PinkHeart
Thanks for sharing your story and for being brave enough to have this procedure. It is pioneers like yourself that pave the way for others.
Best wishes to you.
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Pinkheart, I'm cheering for a wonderful outcome for you! My personal reservation about the surgery relates to having to rely on what is substantially anecdotal evidence regarding its outcomes, but I recognize that not everyone has my spreadsheet-jockey personality. And maybe had I not gone through the twelve-month trial-watching experience for my son's heart device, and still had a gut-wrenching decision to make, I wouldn't be so primed to question the lack of transparency on the node-transplant outcomes. How frightening for your friend to have an approved device that turns out to be defective--and I understand that in sharing this story, you are reminding me that trials and FDA approval or not, there are no guarantees. Thankfully, in my son's case the device has done its job flawlessly.
The NLN speaker was clear that the subsequent lymphedema after injury was in the same limb that had been treated surgically. And again--these were anecdotal cases, not a study, so it's not fair to generalize them to any kind of statistical likelihood after surgery.
Pinkheart, in sharing your story, YOU are giving us all a gift of information. Remember that I said I would leave the surgery to braver souls than I? You're a brave soul, but I think from many of your posts in the past, you are also a thoughtful person and you most certainly did not make your decision without serious consideration of its risks and benefits. Thank you for sharing.
Carol
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Something weird happened during my sleep study! Am I in trouble? I let them use a taped version of the oxygen sensor on my finger, not the clip. My hand, just below the finger they used, is purple and swollen. Oh God! Don't tell me it's in the hand now? What do I do? Help!
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Geez GMA I'm sorry. Maybe it was on too tight and it will resolve itself? I hope so, I can say my hand LE was never purple, so maybe it's not LE.
PinkHeart, I appreciate your story too, and hope for the best for you also. I am doing a study for a breast cancer vaccine. Will it be the big break and prevent recurrance? I don't know, I hope so, but I feel privileged to be able to help forward science. I hope you and others lead to the big break in LE treatment, but as you said so well, let's cure breast cancer too.
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Beatmon, have you looked at the WearEase compression bra and/or compression slimmer (cami)? I've used both, like them both but mostly use the slimmer. They're here:
http://www.wearease.com/wear-ease-products/post-surgical-bras/compression-bra
http://www.wearease.com/wear-ease-products/post-surgical-camisoles/slimmer
Other ideas at the bottom of this page:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htmHope that helps!
Binney0 -
I have primary le on both legs.one small injury,i fell witj the bike...the lymph system sends water. Cus off primary le, the water can not return....voila the le is worse.you start moving the water with mld, but your system is not working well...what happens...too mucj water goes through not enough vessels...they get too much pressure and they loose function as well.that i how , after ten years living with it fairly without really seeing it., a stupid injury ruined my whole leg.
I guess with this experience the sooner you do the lnt, the sooner you are able to stop this circle...They connect with the lymph nodes and keep them working. Otherwkse they will slowly stop working and get fibrotic.
But it also makes sence that 3 transplanted l nodes can stabalise this circle, but when there is another injury, they can not do the job like 25 lympj nodes do.
So off course it is no cure.
The question is: what would happen if the person did not have the lnt and also got another injury...0 -
Kharimata, very good and insightful question!!
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