lymphedema questions is this in the right post?

rant on girl!

it sux that you have pain and that you are being treated with such disrespect 

there are doctors out there wh care... dont stop looking for answers

and remember you are not alone...

PS: if you need a bat... just refer to my signature quote lol

Penelope, I'm so sorry you've had such a hard time getting any attention for this problem. You aren't alone, unfortunately, so please feel welcome to rant on--we sure understand! Our doctors often don't know much of anything about lymphedema, so getting a prompt diagnosis, evaluation and treatment can be a battle. But keep at it, as the right treatment can make a big difference. Any trauma to the area can cause lymphedema, so you're on the right track to check out that possibility.

Doctors don't treat lymphedema; specially trained therapists do. Any doctor on your team (even your PCP) can write you a referral for an evaluation by a well-trained lymphedema therapist. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

If s/he finds this is lymphedema, s/he'll be able to reduce the swelling and discomfort, and teach you how to keep it that way.

Keep us posted, and tell us how we can help!
Binney

yeap, good initials!  I would call my pcd for the referral and you might call your insurance company to ask on coverage

good luck.  I have LE and find if I do too much, the dumb arm hurts!  So give your arm a rest this weekend

Penelope, if for any reason you cannot get a referral, and if you are near Grand Rapids, you might call the Spectrum Hospital lymphedema clinic.  I don't know if they still have it, but in 2012 they had some grant funding to provide free lymphedema screenings, and patients could self-refer. They have a very nice machine called a perometer that gives very accurate readings when measuring our arms (It's painless and harmless to us).  I know that they have provided this service to women who live some distance from Grand Rapids.

Here's information from their website, so I hope that means they're still doing it:

Preventative Lymphedema Screens

Schedule a complimentary arm measurement screen using our laser measurement device, the Perometer®. A pre-surgery baseline measurement is recommended, followed by an additional measurement three months after breast cancer surgery. We encourage all breast cancer survivors to be screened, even if your surgery was years ago. 

Lemmen-Holton Cancer Pavilion, Room 4100
Thursday afternoons by appointment. Please call 616.486.6800 to schedule your screen.

Here's the website: http://www.spectrumhealth.org/body.cfm?id=3031&fr=true

If you are not near enough to Grand Rapids for this to make sense, you might try Beaumont Hospital in Detroit.  I don't know if they have free screenings, but they might, because they have a very well developed lymphedema surveillance and treatment program in their breast cancer center. 

Carol

My 'Guy' has his Masters in OT (Occupational Therapy) in addition to his Certification as a LE Therapist.  Being a PT does not give 'you' education in dealing with LE.  Actually even being a CLET does not give all that is really needed.   Women are not the only ones who deal with LE after surgery and there are somewhat differences between dealing with the different areas involved.  My care is through VA at a small facility so though he had experience with mens issues - I was only the 2nd BC he had dealt with and we did have some issues early on.  We did have a few issues early on but all got worked out - think I drove him crazy as I didn't come close to being the other Gal.  I'll be seeing him next month (already talked to him so he can research) about some ideas I have  before he orders my next garments in the spring.

I've had to go to PT twice for totally unrelated problems but PT will not do anything until they check with him even though on other side and and once was foot.

We are all so different - what 'works' for one my not for another!

123penelope  So sorry to hear that you're having trouble finding a PT.  Hopefully your PCP will have some information for you and can give you a referral.  It's unfair that there is not enough support for LE patients.  

Please keep us posted and let us know how you're doing.   (hugs)  

You might want to mention lymphedema, as not all physicians are up on what it is.   Good luck with your appt., keep us posted.  

penelope   Ranting justified in this situation!  

Are you taking the PT?  Maybe the PT that you are referred to knows about lymphedema, and can make a referral?  

I would also post in the GRRRR - I Hate LE thread under the Lymphedema forum.  There are many wise women there that could possibly help you work the system.  

I hear your discouragement, but please don't give up.  Many of us have gone through the same frustration in trying to find medical help and answers to our lymphedema.  

Penelope, the average physician knows absolutely nothing about lymphedema--it's not covered in medical school or continuining medical education. Even doctors who should know--like surgeons, rad oncs, med oncs--just don't.

We put a page on SUSO to try and educate them: http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

Lymphedema is "patchy"--and here's a link to Andrea Cheville describing that fact: http://www.lymphedivas.com/comprehensivecompression.asp

Look, I'm a health care provider, got LE early, and my rad onc said "Radiation to the level on nodes never causes LE." She's dead wrong, and there are myriad studies to prove that. And I got ahold of her notes and she wrote "Patient says she has LE, no swelling noted." Like she had to discredit me, because her treatment made things worse and she didn't take my LE into account when doing the radiation planning...

Back to therapists: I took the CLT training last summer, and one of the best therapists in the room is the head of a hospital clinic, and had been in practice for years, but had only gotten "weekend" training.

Certification is really the desired training, it's 135 hours, but you can find out how this woman was trained.

I made the rounds of LE therapists: I have a great LE therapist, but she's a massage therapist and wanted me to see a PT early on, and I got some flat out rotten care from CLT-LANA therapists, and finally a decent one.

Your physician's ignorance would be the norm. I teach in a medical school, and give lectures to med students AND the gyn oncologists and breast surgeons and when I ask "do you know how to treat lymphedema", they admit they have no clue. Not to mention they have no idea how to diagnose it.

On bc.org, there is a great quote from Andrea Cheville:

According to Andrea Cheville, MD, associate professor of physical medicine and rehabilitation at Mayo Clinic, it’s important to look at the whole picture: not just size and volume measurements, but the appearance of the limb or other body part. “There is no one value or standard you can use to say, ‘OK, if you meet that you have lymphedema, and if you don’t, well then you don’t have it,’” says Dr. Cheville. “For example, there may be no size or volume changes in the arm, but you could have subtle hand swelling or pitting on the arm. So it’s important not to be too locked into arm measurements alone, as that can create a false sense of security. You also need to be watching the arm and looking for the loss of what we call ‘anatomic architecture’ — an inability to see the veins and tendons in the arm as clearly, or less pronounced knuckles, or skin that is less wrinkled and therefore looks younger.”

http://www.breastcancer.org/treatment/lymphedema/evaluation/diagnosis

I knew enough to be worried about LE for myself--I asked the surgeon about it up front, but in over 20 years of caring for patients, I'd only seen one known case of primary LE, and was told by the vascular surgeon that there was no treatment.

When I developed it three weeks out, there were a lot of things I did wrong: too much overhead stretching, seeing a qualified PT for axillary web who had me do more stretching and movements, and not having the surgeon aspirate my axillary seroma (she put the decision in my hands...) I'll never know if I would have dodged the bullet.

So, your frustration and discouragement, are, unfortunately, par for the course.

Please persevere and get some treatment. And send off some of the info to your your doctor, who is completely uninformed, so she jumps to diagnoses she understands. And let her know that LE is patchy, and never, ever has to effect the entire arm to be diagnosed.

Can you talk to the PT who works near you home and get a sense of what she knows? And possibly talk to the LANA certified woman and see if she has recommendations.

Also, if insurance doesn't have a qualified person in network, they have to make an exception and cover it.

Such a fight and hassle, but ultimately, worth it.

Kira

Great posts, kira and carol.   

penelope  After insisiting on follow-up PT after my surgery, I was assigned to a PT that was familiar with lymphedema care.  She had completed an LE weekend course from a school that I hadn't heard of, and I was skeptical of her skill.  She was thorough in her explanations and technique, and it worked out fine for me.   I learned manual lymphatic drainage technique and how to self monitor for swelling.  

Your frustration is not unique.   On the LE forums you will find that most that suffer with lymphedema have had a difficult time dealing with the medical world in getting acknowledged for the condition.  It's really unfortunate that this is the case, and I encourage you to keep trying.  

Hugs, and keep us posted.  

Yay, Penelope, that's progress!  My fingers are crossed that your insurance will cover evaluation and treatment by the new PT you found.  Stay with it!!!

I am panicking right now! After being out in the sun for about 15 minutes, I just noticed that my right arm, the one I had the SNB on seams to be a little swollen maybe

3 in above my wrist! Maybe it's my imagination, but it's freaking me out! Could it be LE? Would being out in the sun bring it on?

Thanks,

Mena

Mena, if you feel you have swelling, the ideal thing would be to get a referral to a qualified lymphedema therapist, get examined, measured and learn risk reduction information, as well as self care.

Symptoms are important, and shouldn't be ignored.

And, heat and sun can cause swelling.

LE isn't "just swelling" it is progressive skin changes--fibrosis and inflammation--and early detection leads to better outcomes

MENA, I was goofy enough to think pre LE that I could switch between sitting under an umbrella, covering arm and sitting out a few minutes at a time. I did this for about 2 hours rotating,I though I had a good base tan. WRONG. I went home burnt and I believed this contributed to developing LE. I immediately went the next day to my LEist where we looked at my bra strap and the puffiness around it. I did myself in. She had me come for 4 days to get the swell down, I was not overly swollen but yup I did have some swelling. I learned the hard way and now I sit under a tree with a sun shirt on. I keep it on even when I swim. looks dumb with my sun hat on swimming but this is my body and it is me who has to go home after beach day and deal with it. Be careful and drink tons of water and see a LEist if you can find one there. Stay out of sun for a few days and watch like a hawk. I realize it is a light burn but watch to see if you blister on sensitve places and put antibiotic on. keep your arm clean.

I also burnt my hand (blisters)around the same time frame and went and got LEist to treat me and wrap fingers.. I have......learned my lesson.