Lymphedema - what's all involved in getting diagnosis and care?

LiLi1964

Ladies,

I've posted some a couple months back regarding LE in different part of body. This question is related now to something else.

Quick history....BMX 8/7/13; 2 nodes removed each side; electrical shock type pain down inside of left arm from armpit to elbow which has worsened considerably; port implant and node removed right side 10/9/13 - same electrical shock type pain now on right inside of arm but SWELLING OF ARM 3 DAYS POST OP - that's what the question relates to.

OK - ended up in ER 3 days post op when swelling started. Was a Saturday so ER was only option - surgeon told me to go after elevating my arm for 4 hours did not bring swelling down. The concern was a possible blood clot. ER did US and ran blood tests, no evidence of blood clot (felt stupid being in ER w/swollen arm....but understand the necessity).

So, as was my guess right away, it very well may be lymphedema. The ER staff agreed after ruling out the blood clot.

I've lost a tremendous amount of time from work w/all the tests, surgeries, long recovery, blah, blah - you all know how that can be. So what exactly does a certified lymphedema therapist do for diagnosis? And what exactly do they do for "treatment"? Don't get me wrong, I'm not making light of them in any way.....I just am looking for what it is they do. Are they going to give me exercises to do and could I save myself the hassle of going and ask for someone to print the exercises and give them to me so I can do them at home? I'm just tired of missing work and begin chemo on Thurs 10/17 (have positive attitude but no idea how any SE's will hit - so don't know if I'm looking at lost work there on top of everything else) and want to avoid all these long trips into specialists if I can.

If anyone can help me understand all this better (I'll admin I know very little about LE) I'd certainly appreciate it!

Thanks!

carol57

LiLi, everyone here understands your frustration, that's for sure! The LE therapist is the best one to figure out if you have LE, and he/she will diagnose based on a series of measures of your arms, looking for size differences that are typical of LE. There's a lot of value in having those measures done by someone who does it all the time, because if using a tape measure, consistency of touch is critical. If you're lucky enough to have access to an LE clinic that evaluates using a perometer, the measurement is quite precise--light waves bounce off your arm to compute arm volume.

Measuring is only a part of the evaluation. An experienced, well trained therapist knows what LE tissue feels like, and he/she can also listen carefully to your symptoms descriptions, ask good questions, and recognize early stage LE that others would not.

Treatment needs to be provided by a CLT (certified LE therapist) but care migrates quickly to at-home treatment. You would learn manual lymph drainage, often called LE 'massage' (which is not really massage...a very light touch with the fingers to gently nudge lymph fluid out of the swollen area). Depending on severity of your LE, you might also learn 'wrapping' which is the application of bandages that look like Ace bandages but function quite differently. The bandages provide compression while your muscles are at work, and release pressure while your muscles rest. The result is that the muscles have a firm surface to push against, and in turn act as a pump to press on lymphatic vessels and get the lymph moving out of the swollen area. Lymphatic 'massage' and wrapping cannot be learned from a book or a video--it's all about the touch and the wrapping pressure, and both wrapping technique and massage protocol are individualized for each one of us. They call this whole process complete decongestive therapy, and if you have a well developed case of LE, it requires a lot of visits to the therapist, closely spaced for several weeks. But if you get diagnosed early, the therapy is much less intensive and you move to self-treatment faster.

My thought for you is to arrange for an evaluation by a CLT. Explain to that person your time constraints and concerns and work together to craft a care plan that you can assume at home as fast as possible. In many ways, LE treatment is a pay-me-now-or-pay-me-later proposition. Prompt, thorough attention up front can save you lots of time and frustration later.

Take a look at this site: http://stepup-speakout.org/ --the top of the home page has tons of internal links to topics such as how to find a qualified therapist, what LE treatment is like, etc.--better explanations that I have given you here. The best advice of all is to find the most qualified therapist you can--that's what will expedite diagnosis, treatment, and results.

Oh, and I simply have to add: don't be tempted to use an Ace bandage..it's really different and you could make matters worse. I'm not suggesting you would try that, but for anyone 'out there' reading our threads, we can't say that often enough. Photos of LE wrapping can give the impression that anyone can do it with an Ace bandage, but that's a really bad idea.

Best of luck--hope it's not LE and you've got some temporary issue and you can move on soon--but if it IS lymphedema, welcome here, and do ask as many questions as you need.

Carol

Tomboy

a lymphedema therapist will measure both arms, and look you over. they will teach you how to use a special kind of bandaging and self massage techniques for relief from discomfort, and believe me a good therapist is worth their weight in gold and rubies. this is not only for appearances sake, but also for your continued health, because uncontrolled lymphedema has other threats to your health. i urge you, if at all possible, to see one. do you have a treatment center that provides one? I am suprised they did not measure you pre-surgury. i thought that that was what they did, for me, anyway. look for binney, under other lymphedema threads. she and the other ladies there are fantastic with their wealth of information, + she knows how to make a link to helpful outside places with even more info. Good luck!

LiLi1964

Thanks, Ladies. I've already chatted w/Binney on another issue I thought might be LE (nothing that looks or feels like this - this really seems to be everything LE is all about and it quite shocked me). Having had 2 nodes removed at BMX and no LE....I figured getting one more node removed on right side would be a breeze; well, where LE is involved (I knew it would hurt but that's a whole nother issue). And Carol - you probably don't remember me because the LE threads are getting very busy - but I've chatted w/you as well.

I value both your opinions. I see doctors at the UW Madison Clinics - I learned from Binney and Carol the importance of a CERTIFIED LE therapist and already sent a message to my doctor that if I was being sent to PT, she best make it a CLT because otherwise I'm not interested. I did that because I first researched what UW Madison Clinics had and they DO have CLT - so that's where I want to go.

In so far as measuring before - perhaps they didn't do that because I had no issues after BMX and 2 nodes removed at that time. I don't know....but the issue is in front of me now so I take both your recommendations seriously and will ask for that referral to CLT.

Carol - I wouldn't be so foolish (don't mean to belittle anyone that would use an Ace but it's not smart to take matters into your own hands) to do that. I looked some info up and the way I see it...if they don't want BP taken from an arm w/LE...then I'm certainly not going to put any compression on it myself! I'll wait for a specialized therapist to show me what to do and if compression is needed, they can show me what to do. And good call on the "you can't learn from a video or book" - you said that very clearly and I understand, and you are right.

If I need to take the time off, then that's what I must do. And knowing that early intervention means (hopefully) a quicker "at home" therapy plan can be put in place, then time to get that referral and get started.

Thank you again Carol and Kathec! I love this forum and how helpful everyone is (and how informative most are!)

carol57

LiLi, I put the 'no Ace' warning not for you specifically, but for anyone who just might be tempted. Not long ago, someone posted that her primary care physician told her to use an Ace, and that dropped my jaw, so I'm looking for opportunities to sneak in the warning that even if it looks the same, it's definitely not.

It sounds like you've got a good resource in Madison (where I have traveled for work many times, and I just love that town!). I hope you'll keep us posted on what happens next.

Carol

LiLi1964

I most certainly will, Carol. I've read many of your posts re: LE.....you're a wealth of info!!!!

I didn't take the 'no Ace' warning personally - but I do understand you theory on getting that message out. My jaw dropped reading about how your jaw dropped after reading a PCP actually told a patient to do that - seriously?!

I'm not versed in LE much; figured if it didn't apply to me there was no reason to bog my poor little brain with the info when there has been so much else for me to be concerned with. But, even the little bit I've read.....and the glaring "no bp or needles" warning that comes up everywhere LE related, how could a PCP be so foolish? Yikes!

I am very lucky to have the UW Madison Clinics and the Carbone Cancer Center caring for me. Trust me, I feel very fortunate to have such a wonderful group on my side fighting for me......words can't say how thankful I am for them all!

I have appointment to see my PCP for referral on Friday. I'll keep you all informed what happens.

Binney4

Aw, Lili, I'm just finding this and had to tell you I'm so sorry you're having to deal with yet more appointments and information overload. Good for you for getting on top of this quickly, though--makes it so much easier on-going. Gentle hugs,

Binney

LiLi1964

Thanks, Binney! You and Carol really gave me good info the last time around when I was concerned. This is different - spoke w/my family doc today and it seems all are in agreement this node removal I had last Wed has certainly brought lymphedema to the forefront. I got a referral today (didn't see the message until I got home and too late to do anything) - I will call them first thing in the morning.

From what I've read, the sooner you get treatment, the better. Oh, my arm felt worse this morning so I had my husband do some measurements and sure enough, the swelling is worse than it was on Saturday.

Hoping they can get me in quickly so we can get things moving so I can get the best possible outcome!

I'll be keeping you all informed. I'll also be throwing questions at you (if you all don't mind) as I am being seen; just to compare notes......

Lisa

LiLi1964

Ladies,

I'm reaching out here because this swelling keeps feeling worse each day. I'll call for my appointment today; but know they'll not get me in right away.

What can I do in the meantime for self care? I'm not going to wrap the arm or use any kind of sleeve - I don't know what I'm doing and you've made it clear that the CLT is the only one that can teach these things at a one on one visit.

The arm is beginning to hurt above the elbow. It hurts to move it - but I still move it (I don't want frozen shoulder). I know some of the pain is coming from the incision from last Wed surgery removing that lymph node....but it shouldn't be hurting so far down the arm from the surgical pain.....but it does. And it feels fat and heavy.

Any suggestions? I don't want to do anything that will hurt myself.....I see my PCP on Friday.....yet I don't know that she'll be able to help.

Binney4

Lili, you may already be doing these things, but I'll just run through a list so you don't miss any:

Stay REALLY WELL hydrated (helps dilute the lymph fluid and keep it moving).

Elevate your arm (supported) whenever possible--when watching TV, traveling in a car with someone else driving, on pillows at night.

At intervals throughout the day take some deep abdominal breathes (stimulates the largest lymph vessel in your body).

Also at intervals, raise your arm and open and close your fist slowly several times.

Here's more information on what to do while you're waiting for that appointment:

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

Do let us know how it's going!

Gentle hugs,

Binney

LiLi1964

Thanks, Binney! No, I had not been doing that because I was overloaded by the info found and the website you referred to is HUGE. Yes, I'm lazy and wanted it at my fingertips right away.

I will do as you suggested.

OK, ladies - there are no CLT in our area. I just searched several different sites from the stepup-speakout website and nothing w/in 50 miles of our home. Looks like the closest are in IL or MN - I can't travel that far.

I've printed off the list of "how to see if you therapist is properly trained" (obviously paraphrased there) and questions to ask - which will come right along w/me to my appointment. I had actually thought, when I went to the UW Madison website that they had CLT's there but apparently I was mistaken because none come up in my search.

So, what do you do when you only have access (and we have an HMO insurance - it's great insurance but I know how they operate regarding PT and will not refer to outside providers) to PT therapists who "have an interest" in Lymphedema? I don't want anyone messing me up if they don't know what they're doing!

As always, thanks all for your help with this. I know your thread would be helpful but there is a lot there on LE that is more advanced and I don't know anything about this (and how exactly it applies to me) so you're coming here to this thread is really appreciated!!!

Binney4

Lisa, the UW Madison website does indicate they have trained LE therapists:

http://www.uwhealth.org/orthopedic-surgery-rehab/lymphedema-and-venous-edema/13987

At least, they indicate they have "advanced training." If you call and find out that they have at least 135 hours of specifically LE training beyond their PT or OT certification, that's what you're looking for.

The "CLT" title usually applies to therapists who are "certified" by the Lymphology Association of North America (LANA), but all they have to do in order to gain that certification is to prove they've already taken the 135 hours and then pass LANA's written test. They don't have to demonstrate any clinical ability, and they don't have any obligation to continue to treat LE in the approved manner once they're certified--LANA does not have a review committee or a way to deal with patient complaints about therapists. So the LANA certification only tells you they took the training, not that they're any more competent than any other therapist who has the training but not the LANA membership. So ask about their hours of LE training, and don't worry about the "CLT".

If that doesn't make sense, let me know and I'll try to explain to it better.

LiLi1964

Binney,

That's actually the exact site I was at when I THOUGHT they had CLT's - it wasn't until I used the search function at the website you offered that I found there is nothing in the Madison area (or even in southern WI).

I printed off the list of questions and the qualifications from the stepup-speakout site you sent and will bring it with me to find out if the Occupational Therapist I'm being sent to is actually qualified (it asks those same questions you just wrote about). I'm thinking I'm going to be disappointed....but I could be wrong. We will just have to wait and see.

coffeelatte

Lisa, I too suffer from lymphedema and I am waiting to be scheduled with a PT specialist. I have found only one position that helps me reduce the swelling. I have to lie down on the bed and prop my swollen arm so that it is above my heart. I make sure the wrist is higher than the elbow and the elbow is higher than my shoulder. I do this two or three times per day for 45 minutes. About 2 or 3 times during the 45 minutes, I open and close my hand 30 times. I was told to do this by a PT who works with my BS. She said that should help with swelling until I can get scheduled to see someone covered by our HMO. It took about three sessions before I started to see a difference. Not only did it stop that dead-aching pain and heaviness but it helped relieve the miserable claw feeling I get under my arm where the lymph node was dug out. My BS said the node was really deep plus I have had two prior (unrelated) elbow surgeries on that arm so I was not surprised when lymphedema hit. I hope you are able to get comfortable and find some relief.

LiLi1964

coffeelatte - thank you so much for that info! That's exactly the type of exercise I was looking for - something that hopefully helps and something that will not cause any harm; and don't ask me what type of harm.....I just don't want to fool around with this and don't want to unknowingly hurt myself.

I actually feel pretty lucky getting in to see someone on 10/31! It usually takes much longer to get into the clinic for anything PT or Occupational Therapy. I just hope she answers my questions about her qualifications and hours of training to my satisfaction. If not, then I guess I'll have to start making some calls to therapists in the UW clinic to see what their training is and then fight w/the HMO to get a referral there. Ahhh, it never ends......

Let me know how you progress. I'll start doing that simple exercise tonight!

Lisa

coffeelatte

Lisa, I too am one of the August 2013 surgery members but I do not post much because a slow recovery and lymphedema keeps me off the computer. I swell like crazy when on it; however, I read the posts all the time from my iphone. Unfortunately, I can not seem to log on when using my phone so I wait for a really good day to get on my lap top. I have been diligent with the arm prop and it has turned things around for me. I think it will help you too.

LiLi1964

coffeelatte - a fellow August 2013 surgery! 

I had not looked at your surgery date; I was actually quite surprised reading in some threads of ladies seeing someone for LE w/o any symptoms.  It seemed strange....but I know so little about LE.  I would have thought one would be experiencing symptoms of LE before seeing someone for it.

When did you start to have symptoms?  I was shocked that my swelling started in just a few days following my last surgery; and I mean shocked!  I got thru BMX and thought I was in the clear - then I had to have this last surgery for one node removal and had this issue pop up w/possible LE.  But I personally wouldn't want to run to PT or a CLT unless there were symptoms, know what I mean?

I don't mean to belittle anyone with what I said there; I want  to make sure nobody takes it the wrong way.  I figured, when I got DX for cancer that I'd have surgery, heal and move on.  I still don't know a lot of what everything is, but there appears to be MUCH that can happen after BMX.  I just personally wouldn't go to a doc or specialist unless there was an indication or I had symptoms of some problem; that's just me personally.

coffeelatte

I had a lot of swelling a few weeks after surgery. At a follow up appointment my BS did not like the way my arm looked and he was not happy with my limited range of motion. I went to PT hoping the improved range of motion would relieve the pain and swelling, but it did not. Instead it got worse with several of the exercises I was doing at home. I also noticed a lot of swelling around the incision on my cancer side but did not seem to have it on the prophylactic side. I kept massaging the cancer side but the swelling would not diminish. Also, the scar/incision on the cancer side began widening quite a bit from the swelling putting pressure on it. The other side is a nice little line and now the cancer side is a huge, red, mean looking scar. It did not look like that until the swelling put all the pressure on it. I keep doing the elevation with the arm and has helped the pain in my arm; but it certainly is not a permanent fix at this point. I just am so thankful it reduces my pain.

I can't thank the ladies here who give such great words of wisdom and sage advice. In late August I was wrapping my arm with an Ace bandage for about four days until I came to this site and read it is not a good thing to do. It saved me from creating a more serious problem. Thank you so much for all the time and effort everyone puts in to this website.

carol57

coffeelatte, can you see a lymphedema therapist for an evaluation? Even if it's not LE causing the swelling, some baseline measures of both your arms would be a wise idea. Also, watch anything red like a hawk. If your lymphatic system is the culprit for your swelling, you may also be at heightened risk for cellulitis, i.e. infection. If you see that redness expand, then it's not necessarily just angry scar tissue, and you should be seen, stat, to check for infection. Cellulitis is a nasty condition that spreads rapidly and can hospitalize a person within just a day or so if not nipped in the bud with antibiotics.