At My Wit's End...

Hi Wendy,

I'm so sorry you and your mother are having to deal with the LE demon. I know how hard this must be and wanting to help your mother. Is she taking any meds for pain? I have LE in my arm, breast, trunk & abdomen. I know how uncomfortable LE can be when there is pain. You are so right that depression is there due to the LE.



I don't know where you are in the United States but I do have the following suggestions:



Yes, a pump might help. I don't know of any pumps for just the arm. I use a Lymphapress Plus pump for my upperbody. It is a jacket with zippers. I can leave out one arm if I want. It does pump the truncal area as well. I find it very relaxing and keeps down the pain in my breast and arm.



The other pump that some of my fellow LEers use is the Flexitouch. That might work for just one arm. I think that massaging or pumping the upper body as well as the arm will give more relief. The idea of the pump is to first do a version of MLD (Manual Lymph Drainage), and that helps clear the lymph nodes that you want to move the fluid into. If the therapist has not taught you or your mom MLD, you should ask her for a lesson. It's very easy to do, and can be done many times during the day.



Is your mom drinking enough water? It is easy to get dehydrated. The more water she can tolerate the better, as this helps move the protein rich fluid through the system. If there is dehydration, there is a risk of the fluid stagnating. That can cause more swelling and pain.



I also think you should ask the LE therapist if there is a cool light laser available in your geographical area. I have swelling and scar tissue that makes my LE worse. My therapist has been using the laser on me for the past year. It only takes a few sessions, and then my arm and breast start to feel better. I know the swelling has gone down.



I wish I could make your mother better. Others on this site may have even more suggestions for you. It appears to me that the compression sleeve didn't give her enough compression, and that may be why the sleeve doesn't fit and you have gone back to wrapping. I wonder if a Jovi arm sleeve might help? It can be a bit of a struggle to get on. If the pain is strong when she is touched (I've had that problem also in the past) then the Jovi probably wouldn't work.



I would encourage you to google on the National Lymphedema Network for some additional help. You will find they have a variety of articles. I seem to recall one recently (in the last year) that focused on surgery to ease LE issues in limbs. And there might be some other info on treatments that I am not aware of.



I hope you will keep us posted on how your mother is doing. I wish you both all the best and some peace from the nightmare of LE.



grace

Thanks, bygrace! Here are references for bygrace's information, just to make it a tad simpler:

The National Lymphedema Network:

www.lymphnet.org

The compression sleeve bygrace refers to is usually for nighttime use. It's much more comfortable than the day sleeves. It's quilted, stuffed with foam chips, and stitched in such a way that it encourages lymph drainage from the arm. There are several manufacturers and I'll give you two. The one bygrace mentioned is JoviPak:

www.jovipak.com

And there's Solaris-Tribute, which I know will make them with a zipper so they're VERY easy to get on:

www.solaris-tribute.com 

Binney 

Wendy,

So sorry to hear about your mom's situation.  I have never seen this doctor myself, but since you are in Central California, you might consider getting a consultation from Dr. Emily Iker-d'Harnoncourt in Santa Monica.  She's an MD who specializes in lymphedema treatment (a rarity!).  I know she has pumps in her office and may have a laser as well.  If your mom is up to traveling that far, the doctor could perhaps assess her condition and recommend a treatment regimen, if nothing else.  Her website is: www.lymphedemacenter.com.

Good luck and best wishes to your mom.

Wendy,

I am so sorry to hear about your mother, but she is indeed lucky to have you looking out for her.  I can't add alot to all the good suggestions you have already received but will make a couple more comments.

The fact that your mother's arm has continued to get larger and more symptomatic in spite of what appears to be appropriate treatment with compression garments and wrapping could be due to two things.

     1.  It may be that your therapist has indeed done all she knows to do but she may not have the longterm experience or specialized training to pursue more effective treatment that is customized to your mother's needs.  Make sure her therapist is fully certified as a Lymphedema therapist (CLT) and has had a minimum of 135 hours specialized training for LE.  If this is not the case it would be worth your while to check around in your area for another therapist who has experience especially dealing with advanced or difficult LE cases.

    2.  It is very possible that your mother's failure to improve or get pain relief may be related to the other medical issues she has going on.  The fact that she has a recurrence of her cancer in the chest wall and liver may play a role in the lack of response of her LE to treatment.

I just returned from attending a ASL (American Society of Lymphology) conference in Kansas City and alot of good information was shared by both MD and PT professionals who deal with LE exclusively.

One of the presenters, a MD who runs a Lymphedema clinic, shared her experience that patients who fail to respond to appropriate LE treatments after 3-6 months, should be fully examined for other medical causes or diagnoses.  In her personal experience she has found patients can have a secondary process going on, whether it is a new dx or recurrence of cancer or vascular or neurological impairments not previously diagnosed.  Once those conditions receive proper treatment the LE will again be responsive and should improve with ongoing care.

Hope your mother soon gets relief and you are able to find expert LE resource staff in your area.

Binney,

Just a little more info you may be interested in.  Dr. Emily Iker d'Harnoncourt is the Vice President of the American Society of Lymphology and was one of the primary presenters at the conference I attended last week in KC along with my PT-CLT therapist.  She may mention surgical intervention on her website as a treatment option, but based on her presentation and discussion of her patient cases that is not an option ever taken except in extreme cases of Stage IV LE with concurrent life threatening morbidity after all attempts at aggressive CDT and traditional LE treatments have failed.  it sounds like while the majority of patients seen at her clinic are secondary LE, she also sees a high volume of primary LE patients in advanced untreated states.  She is doing a lot of work with both Lymphoscintigraphy and ultrasound in the detection of both congenital and secondary anomalies of the lymph system.

This was my first introduction to her and many other professionals well-known in the LE research and clinical world.  Dr. Neil Piller from Australia was there presenting his latest research results on the new low level laser therapy for LE which appears very promising.  

Dr. Renato Kasseroller who is the medical director of the Vodder school was there.  He has established a physician education program in Europe in lymphology and the diagnosis of lymphedema. 

Charles McGarvey PT, MS, DPT, FAPTA who worked over 24 years in the NIH system has done extensive research and clinical studies which show the benefit of an early detection system for LE which he hopes to see incorporated in most surgical oncology office settings.

There was very interesting input and heated debate at the conference regarding the use of MLD, compression garments and antibiotics as a standard protocol for any LE patient having to undergo any surgical procedure. 

A young MD from College Station Texas by name of Wade Farrow presented his belief that in addition to 2 weeks of pre-surgical antibiotic therapy, a LE patient should also receive antibiotics for 2 weeks post-op and immediate use of compression garments following surgery.  He also felt that MLD was not contraindicated but in fact beneficial immediately prior to a surgical procedure and as needed following to help maintain an optimum lymph status that can better handle the expected inflammation and fluid increase following any kind of surgical procedure.

Dr. BB Lee who is a clinical professor of surgery at Georgetown University presented many controversial theories about transplanting normal lymphnodes to areas of lymphatic trauma.  He has done extensive work with vein, lymphatic and vascular malformation.

Dr. Waldemar Olszewski from Poland was also there. He is probably one of the most prominent leaders in lymphatic research today having published over 600 articles and 7 books on the lymphatic system.  He was the one who discovered the spontaneous, rhythmic contractility of human lymphatics back in 1980.

It was very interesting to note that there is still much debate and discussion among the medical professionals as to the best treatment approaches to LE.  I was still encouraged that there is so much research going on both here and internationally.  It is apparent that the medical profession is gradually recognizing the importance of the lymphatic system and that more knowledge is needed. 

Wendy, in addition to the other suggestions I would like to add that your mother may benefit from going to a Pain Clinic.  There are pain specialists all over the States.  Most are anesthesiologists because of their extensive training in pharmacology (using medication to manage pain) and neurological interventions like nerve blocks.  Most large and many moderately sized hospitals have Pain Clinics that provide a multi-disciplinary approach, addressing the physical, social, financial and emotional aspects of pain.  Granted, they may not be greatly knowledgeable about LE, but they should be open to learning about it.  If there is a hospital or medical center that treats cancer near you, check with them first, they often have Pain Clinics or pain specialists available.  Your mom's oncologist or primary doctor can refer her. 

It is always distressing to see the failure of treatment. Quality of life is important and often that is directly related to pain relieve. I agree that pain management should be addressed. The problem is that VERY few providers understand the mechanism and treatment of pain in those with lymphedema. There are a variety of interventions in the discussion thread that Binney mentioned regarding leg lymphedema.  Anti-seizure meds are frequently used now to block the transmission of pain. Cymbalta is great to add to the arsenal in treatment of pain and depression. A variety of antidepressants can be included... let's face it... if you are in chronic pain, you are depressed.  I think that a pump used with pre-existing pain would be very cruel. Can you imagine squeazing an already painful arm? CDT and wrapping, as has been done would be a lot less traumatic, in my opinion.

I highly recommend meeting with the provider and expressing concern for the management of symptoms. This can be done in a nonconfrontary manner. Any provider worth their salt will work will welcome concerned family and work out a care plan.

Now, we are crippled by preferred provider lists and formularies... all interventions are not available due to cost... unless you are financially blessed.

And above all... I believe in prayer... include the providers because they need more wisdom in this area.

Let us know how things are going.

Pat