Friday, October 20, 2006

My lymphoscintigraphy (LAS) results showed no lymph vessels in legs

Q: My lymphoscintigraphy (LAS) results were interpreted and I was told that I have no lymph vessels in my legs. Can this be true?

A: No, this cannot be an accurate interpretation of your results, but rest assured, many patients have echoed your comments "precisely" in my experience. LAS measures uptake and transport of lymph over a period of time. A radioisotope, which can only be absorbed by lymphatics due to its molecular size, is injected into the system, usually at the toes, and diffuses into the swollen tissues. Radiological pictures are taken to mark the progression of the radioisotope over time.

I would first like to comment that sometimes LAS test results are misinterpreted simply due to the medical profession's inexperience performing this particular test. There are very few physicians who specialize in lymphology, much less call for routine LAS for his/her lymphedema patients. As such, it is quite unlikely that any patient would find a local facility specialized in providing this test, which is then followed by informed interpretation of the results.

Oftentimes, as so many of us realize, lymphedema as a disease condition is mislabeled and misunderstood. Commonly, whole batteries of tests are conducted to rule out other disease conditions including: deep vein thrombosis (DVT), heart disease (such as Congestive Heart Failure [CHF]), cancer, and liver failure, to name a few. Most would agree that it is prudent to run these tests to rule out serious additional health concerns and, once other problems are dismissed, lymphedema is generally considered a diagnosis of "exclusion" (everything else that could cause swelling has been ruled out).

One of the greatest problems encountered is that there are no agreed upon standards for administering LAS such as: time interval between injection to first image; second image and last image; amount of activity (movement/ exercise); type and duration of activity during periods between imaging, etc.

Another problem is that, unlike MRI, CT scan and dye injections, LAS does not provide a clear, resolute picture, but rather, shows a hazy image that requires a trained eye to interpret.

So why would you be told that there are no lymph vessels in your legs? The answer, again, becomes a matter of interpretation. When the injection is performed, a radioisotope, which can only be absorbed by lymphatics due to its molecular size, diffuses into the swollen tissues. Since lymphedema involves "stagnant" tissue fluid and poor transportation of lymph, it stands to reason that the injected solution would give a picture of little to no movement (i.e. Haze).

Furthermore, everyone has lymph vessels throughout the body since to be born without them would render the human being lifeless. In primary lymphedema, we know that, most often, less vessels and nodes exist and that the size/ caliber of these tissues is smaller than normal, therefore less uptake of lymph is seen and transport is sluggish. In secondary lymphedema, usually the lymph nodes are either damaged or removed causing many blocked connections from the vessels that were attached. In either situation, lymph vessels do indeed still exist; however, their function may be quite inadequate. If sufficient time is not taken during the LAS to record movement of tracer, then one could conclude that no vessels are working. However, in all cases, even when sufficient damage has been sustained, the lymphatic system is laboring to transport fluid wherever healthy vessels still exist. Perhaps two hours after the injection has been performed, tracer will be seen in other body areas indicating that it has made its way into the bloodstream via the thoracic duct.
It is important to address this misconception to clarify that lymphedema is nearly always treatable. It remains treatable even in the most advanced cases due to the ability of our lymphatic system to be "re-awakened" with proper stimulation, and to work more efficiently and effectively. Manual Lymph Drainage (MLD) has been shown to make vessels contract more frequently, thus propelling fluid through once fatigued vessels. Exercise within a compression bandage further stimulates vessel activity. So to be clear, vessels always exist, but they may not be visualized by LAS because LAS measures uptake of fluid and transport over time.

January-March 2006Steve Norton, CLT-LANA

NLN Question and Answer

The National Lymphedema network

Thursday, October 12, 2006

I Have Lymphedema Should I Take Antibiotics Before Dental Work?

I Have Lymphedema Should I Take Antibiotics Before Dental Work?
This is a frequent question that arises in all the online lymphedema support groups. My own personal opinion is that it depends upon your personal history with infections and with the stage of your lymphedema.

My preference is to take a prophylactic course anytime I have dental work. This is because I have such a difficult time with and am so very susceptible to cellulitis. Also, because a lymphedema limb is already immunocompromised, the risk of a dental infection spreading to the effected limb is a much greater risk.

Here is an excellent question and answer from the National Lymphedema Network's Q&A section on their website.

Dr. Kathleen Francis is the responder to the question:

Q: I have primary lymphedema of my left leg and had one episode of cellulitis in my leg about 7 years ago. I have to undergo dental treatment soon and have heard that I will need to take antibiotics before the procedure to avoid getting an infection. Is this true?

A: The answer to your question is not a simple one, unfortunately. The question of antimicrobial prophylaxis has been a controversial one for years and recommendations are still evolving. Although prophylaxis in certain groups has become generally accepted, not all applications have been proven. I will quote from an excellent review article on antibiotic prophylaxis in dentistry by Tong and Rothwell in the journal of the American Dental Association in 2000:

"There is a long held belief in the theory of focal infection such that subclinical infectious foci in the oral region .result in systemic illness or cause disease processes in distant locations. Although generally regarded as not having scientific merit, this concept often drives recommendations for the use antibiotics prophylaxis. As a result, dentists and physicians tend to use antibiotics in situations in which there are no clear scientific bases."

One group for whom antibiotic prophylaxis is very well documented in the literature is persons at risk for infective endocarditis (IE), an infection of the lining of the heart or heart valves that can be life-threatening. Those at highest risk for endocarditis include persons with prosthetic cardiac valves, previous endocarditis, severe congenital heart disease, some heart valve disorders, or certain types of pulmonary or ventricular shunts.

Those dental procedures that appear to carry the highest risk for susceptible patients include dental extraction, periodontal procedures such as surgery or scaling, certain endodontic surgery, dental implants and reimplantation, initial placement of orthodontic bands, interligamentary local anesthetic injections, and prophylactic cleaning with anticipated bleeding.

The trend over recent years has been to recommend antibiotic prophylaxis in dentistry for fewer conditions. The American Academy of Orthopedic Surgeons now recommends against routine antibiotic prophylaxis in patients with prosthetic joint replacements. This arose, in part, from studies showing that the risk of death from severe reactions to antibiotics actually far outweighed the risk of late prosthetic joint infection.

In returning to your specific question, the answer at this time is that there is no specific scientifically supported recommendation for antibiotic prophylaxis for dental procedures in patients with lymphedema, all of whom have some risk of cellulitis in the affected limb due to a compromised lymphatic system. Bear in mind that some reactions to antibiotics can be fatal, whereas cellulitis is almost never life-threatening.

The bottom line is that without good scientific studies examining the question of prophylaxis and lymphedema, individuals with lymphedema planning to undergo dental work should be evaluated carefully by a physician to determine the relative risks and benefits of antibiotic prophylaxis in each particular case. My bias is to use antibiotic prophylaxis only for those high-risk dental procedures described above in a few patients who continue to have multiple recurrent episodes of severe cellulitis in the lymphedematous limb or those who have developed cellulitis following a dental procedure in the past. However, different physicians have different approaches to this, and you need to speak with your own physician and dentist who have insight into your particular medical history.

Friday, October 06, 2006

Lymphedema Call to Action - Lymphedema Stakeholders

Lymphedema Stakeholders, Inc. is proud to announce that Senator Craig Thomas (R–Wyo.) introduced federal legislation on Thursday, September 28, that will enable ALL state licensed or certified therapy providers to once again provide physical medicine and rehabilitation services to Medicare beneficiaries under the supervision of physicians in “incident to” reimbursement situations.

The Access to Physical Medicine and Rehabilitation Services Improvement Act of 2006 (S.3963) will restore physician choice of whom they can hire to provide services to their Medicare patients. This includes lymphedema therapists that are RN’s, LPN’s and LMT’s.

This legislation is an important step to ensuring Medicare beneficiaries access to quality health care and restoring physician choice of therapy providers working under their supervision.

The second part of the bill makes lymphedema therapists covered providers for the purposes of Medicare reimbursement. It is believed that lymphedema therapists represent a great opportunity for cost savings to the Medicare program. Secondly, breast cancer survivors suffering from lymphedema have lost access to more than one-third of these specially trained therapists because of the Medicare rule.

We need your help with the following:

What to do this week:

· Immediately activate your grassroots in Wyoming. We’ve already encountered strong opposition to this legislation. Ask your members and contacts (patients, too!) in Wyoming to attend town hall meetings to demonstrate their support of this legislation and Sen. Thomas’ bold leadership. The web form page is here:

Wyoming members or anyone knowing anyone in Wyoming should immediately call or write Erin Tuggle at (202) 224.6441 and tell her how much they appreciate Senator Thomas’ support of your profession. Erin is Sen. Thomas’ legislative aide. For your members outside of Wyoming, a quick e-mail thank you will be helpful.

· Call or write Sen. Alren Specter and thank him for co-sponsoring S.3963. (202) 224-4254

Call or write Sen. Jim Bunning and thank him for co-sponsoring S. 3963. (202) 224-4343

What to do in the coming weeks and months:

· Make an appointment to see your congressperson while they are in his/her district campaigning (October-early November). A meeting with your representatives in your hometown will make an impact. Use the attached talking points

· Make future contacts with your home senators and representatives and ask them to co-sponsor or support S.3963. The more co-sponsors we have, the more likely it is our legislation will be successful. This can be a telephone call, a letter, an email, or an in-person visit. This will be a sustained campaign and I’ll be in contact with you regularly to request your help.

· Contact the Coalition to Preserve Patients Access Organizer (Cate Brennan Lisak - 800.879.6282 ext. 148) if you plan to travel to Washington D.C. She will assist you with getting appointments with your congressperson and talking points, etc.

· Get your physicians, other health care providers and patients involved.

Thank you for your support and contribution of your valuable resources. On behalf of Lymphedema Stakeholders and the Coalition to Preservice Patient Access to Physical Medicine and Rehabilitation Services we are grateful for your support. We believe that together we can get the unfair and ill-advised therapy-incident to rule corrected and improve patient care. Our opposition wants to continue to limit patient access to quality health care and not allow physician choice of who can provide therapy services. They are spreading misinformation about the educational and clinical qualifications of therapy providers like you, and we need each other’s commitment to action.

Respectfully submitted,

Cheri L. Hoskins, CCT
President, Lymphedema Stakeholders