Lymphedema                                             
    
     I had a right modified radical mastectomy, with seven lymph nodes removed, in November ’05, for stage 2A breast cancer.  In February ‘06, I took a short plane flight, and soon after, noticed some odd swelling at my right elbow.  This was seen by PT in early March as equivocal, and we waited to see what would happen.  By April ‘06, my entire arm was swollen, my chest wall felt fuller, and my hand began to swell with the first sleeve garment we tried.  I went through two full weeks of wrappings, two different sets of compression garments, had a very expensive night garment made, which made it worse, continued with manual lymphatic drainage by the Physical Therapists, and at home on my own.  I was walking laps in a pool, keeping my hands “working” underwater.  This helped a bit, but it was not resolving.  So it was recommended that I see a LE expert.
     Dr. Stanley Rockson is a specialist in lymphedema treatment, at Stanford University Hospital Clinics, in Palo Alto, CA.  After I saw Dr. Rockson, and was fitted for the Elvarex compression garments, my LE has resolved, and is under control at this time.  I use a mini-trampoline daily for exercise, which has helped to keep my LE under control, and I now wear my garments mostly for travel by air or at higher altitudes.  When I saw Dr. Rockson in September ‘06, I went with a long list of written questions, all of which he graciously took the time both to answer, and to wait while I scribbled his answers on my paper.  I typed this out when I returned home, and have since passed out copies to every MD, PT, massage therapist, and anyone I think might come in contact with LE, who might perhaps not know much about LE, as was the case with my three physicians at the time I developed LE.  Dr. Rockson did come to my area by invitation, and give a talk that was well-attended by every health professional and LE patient we thought might benefit from hearing his expertise.  Now the entire county is on the same page about LE, and all the women now facing breast cancer surgery are going to be measured before and after surgery to screen for LE, so treatment can be prompt and effective.  
    Here is my synopsis of his answers to my questions:
·	Water exercise is the best exercise for lymphedema.
·	Weight loss always helps.
·	Yoga is fine, except for headstands and handstands.  
·	Trampoline rebounding, in his opinion, is most helpful for leg lymphedema, but says it certainly can't hurt arm lymphedema (start at 5 minutes per day, go up to 20+ minutes a day gradually).
·	Fine to sleep or lie on the affected side, as long as you are comfortable.
Re:  Lymphedema, continued, page 2 of 3
·	Getting precancerous lesions or skin tags burned off by the dermatologist is OK only as needed, just make sure good sterile technique is used, and use antibiotic ointment afterward.  Again, avoid anything that will break the skin.
·	Massages are fine, even gentle massage in the affected hand, arm, or chest wall is fine, but NO deep tissue work in the affected areas (e.g. arm, hand, chest wall, leg).
·	No acupuncture in affected areas.  Fine to do acupuncture in the rest of the body, but not in areas of lymphedema, this is because maintaining skin integrity is paramount in lymphedema.
·	Low salt diet is not necessary.  Avoid obvious high salt items, just be reasonable, and watch what works in your body.
·	Alcohol is fine.  The National Lymphedema Network states that alcohol in general, and wine in particular, is not good at all for lymphedema, but Dr. Rockson does not feel that this is true.  Again, he recommends watching how one's body responds, and being reasonable. 
·	All air travel is problematic for lymphedema, regardless of length of flight.  However, he feels it is safe to fly if one has garments that are well-fitted and wears them throughout (and after) the flight.  He also recommends getting wrapped either by PT, or if you, or someone you know, can help you to wrap yourself, just prior to the flight, and then stay wrapped the usual 24 hours, that would work.
·	Extract of Horse Chestnut can help.  It is formulated as Venastat and is sold at Longs, etc. just follow directions on the package.  Whole Foods also carries it in capsule form.
·	He feels that properly fitted compression garments can often solve whatever is not working well.  These may often need to be custom-fitted garments (Elvarex brand is a favorite of his).  
·	Night compression garments work for people who wake up with significantly more swelling than when they went to sleep, people whose lymphedema is only held in check by their daytime compression garments.  If this is not true for you, then the night garments will not help to reduce your lymphedema.
·	If custom-fitted compression garments do not do the trick, he is a big fan of the Flexi-Touch pump.  It is bio-engineered to simulate manual lymphatic drainage, and takes about an hour a day.  His office is used to working with the manufacturer to get one's insurance company to cover the $8000-$10,000 cost.


Re:  Lymphedema, continued, page 3 of 3
·	He also said that now that I had been to see him, I need not make the trip to Stanford again unless necessary, but instead I should feel that I have access to him, and can call his Nurse Coordinator any time with questions or problems.  (That phone number is 650-725-7374).  He was extremely knowledgeable and quite helpful and patient.  I liked him a lot. 
·	I got the appointment sooner than the 3-5 month wait by accepting a long-time-out appointment and then asking to be put on the cancellation list.  A cancellation came through quickly. So I got to see him in about a month from the time I first called.  The phone number to make an appointment is 650-723-6459, fax number is 650-723-8392.  This is the Stanford Cardiology Clinic, which is where he works.  They will want you to have all your records concerning lymphedema sent to them prior to your appointment, by fax is fine.
Now, February ’08, two years later, I wear my garments for air travel and at higher elevations, otherwise, I am doing fine.  I feel so strongly that information is power, and that the more we all compare notes, and talk to each other (and our health care providers), the sooner LE will be understood and cured.   

All my best, Cynthia Adams