Treatments

Project FAVA does not recommend or endorse any specific treatments or procedures. A treatment that works well for one patient may not work for many others. However, various treatment options are available for you to explore and discuss with your medical providers.

Because success with treatments varies greatly among patients, and because sometimes more than one type of treatment is necessary, it is often best to explore treatment options with an interdisciplinary team* familiar with FAVA.

*An interdisciplinary team is a group of medical providers from different fields who work collaboratively to create and execute a plan of care. An interdisciplinary approach to FAVA often includes, at a minimum, an interventional radiologist, an orthopedic or other surgeon, and a hematologist/oncologist or other medical provider.

While there is no known cure for FAVA, experts are continually exploring better options, and treatments are improving. For instance, researchers are presently investigating various medications for FAVA that may be more effective with less side effects than the medications currently available, as well as investigating alternative methods of delivery of medication. Thus far, the research proves promising.

If you are considering one of the treatments below and would like to speak to someone with FAVA who has experience with that treatment, please email us at hello@projectfava.org or complete our Contact Form.

Treatments currently available include:

Surgical Resection

Surgical resection is a surgical procedure whereby part or all of the FAVA is surgically removed. To learn more, click on this link.

Cryotherapy

Cryotherapy, also called cryosurgery, is a treatment in which extremely cold temperatures aim to freeze and kill the FAVA tissue.

Medication:

Medications work by suppressing parts of the PIK3CA pathway. They may provide pain relief, soften or reduce bulk lymphatic tissue, and/or stabilize or improve the course of the disease. Medication management includes:

Sirolimus

Sirolimus, also known as rapamycin, is a medication in the MTOR inhibitor classification.

Alpelisib

Alpelisib, marketed under the name Vijoice®, is a medication in the kinase inhibitor classification.

Novartis offers eligible patients a Universal Co-Pay Program to save on out-of-pocket costs and a Care Champion Program for individualized support. To learn more, click on this link.

High Intensity Focused Ultrasound (HIFU)

HIFU is a treatment in which high frequency sound waves aim to kill the FAVA tissue.

Achilles Tendon Lengthening

Achilles tendon lengthening is a surgical procedure that aims to stretch and elongate a contracted (i.e., shortened) Achilles tendon.

Amputation

Amputation is a surgical procedure during which part or all of a limb is removed.

Interventional Radiology Procedures

Some patients with FAVA have large veins - causing pain or thrombosis (i.e., blot clots within the veins) - that need to be closed with interventional procedures. Sclerotherapy, a procedure by which a solution is injected directly into the veins, has had a variable response among FAVA patients. Some have reported success with sclerotherapy, while many others have reported no relief and/or a worsening pain following the procedure.

Alternative Pain Relief Strategies

A FAVA patient experiencing significant pain can consider alternative therapies, instead of or in addition to traditional methods. Pain management clinics with interdisciplinary pain teams often combine a variety of pain management therapies to treat the pain. Some alternative therapies include:

Gabapentin

Gabapentin is a medication that may relieve nerve pain associated with FAVA.

Acupuncture / Acupressure

Acupuncture is a practice rooted in ancient Asian medicine in which extremely fine needles and heat are applied to specific points on the body. Acupressure is a similar technique to acupuncture, using hands to apply pressure instead of needles. While many sufferers of chronic pain have found it a useful tool, studies are mixed in their conclusions as to whether these techniques relieve pain. In the United States and worldwide, licensing requirements for acupuncturists vary from state to state.

Physical Therapy

Physical therapy is treatment through the use of exercise, massage, and other physical measures, instead of medication or surgery. It may help with contractures (i.e., stiffness and shortening) associated with FAVA.

Psychotherapy

Many patients with chronic illnesses such as FAVA experience challenges as they cope with diagnoses, treatments, pain, adjustments to their lifestyles, and/or feeling alone or overwhelmed. Psychotherapy - treatment through psychological means - may help a patient to cope more effectively.

If you or someone you know is in crisis or having thoughts of suicide, a prevention hotline can help. The National Suicide Prevention Lifeline is available to provide free and confidential support 24 hours per day. Use the three-digit dialing code 988, or contact the crisis text line by texting HOME to 741741.

Meditation

Although research is still in the beginning phases, some sufferers of chronic pain have experienced positive outcomes in combatting the pain from meditation, including Mindfulness Meditation. Mindfulness meditation involves focusing on your body, observing feelings of pain as they arise, and learning not to judge, resist, or struggle with the pain.

Biofeedback therapy

Biofeedback therapy is a technique in which you are connected to electrodes, which provide information about your involuntary bodily processes, such as muscle contraction. A biofeedback therapist can use the information acquired to help you to practice relaxation techniques, thereby, reducing your pain.

Compression Garments

Some FAVA patients have reported a reduction in their pain level when wearing compression garments. You can purchase compression garments off the rack or have one custom made for a perfect fit at a medical supply store or online.

Diet

Some individuals with FAVA have reported a reduction in pain level corresponding with a decrease in the consumption of foods that cause them inflammation or other adverse reactions. Food sensitivity tests are available to determine intolerances and inflammation.

CBD Oil

CBD (cannabidiol) oil is a cannabinoid, which is an active ingredient of cannabis (marijuana) and comes primarily from the hemp plant. It is different than the cannabinoid, tetrahydrocannabinol (THC), in that CBD is not known to cause psychoactive effects. Some FAVA patients have reported experiencing temporary pain relief or reduction with the use of CBD oil or other CBD products.

*Disclaimer: The legality of CBD products varies worldwide and is changing rapidly. In the United States, products containing CBD may be illegal under federal law. (Even though the Agricultural Improvement Act of 2018 removed hemp from the Controlled Substances Act, other federal laws and FDA regulation continue to limit the legality of CBD infused products.) In addition, each of the 50 states has varying laws regarding the legality of CBD. Moreover, some sellers of CBD oil and other CBD products are violating U.S. law in selling products unapproved by the FDA with unsubstantiated claims.

The information on our website is for informational purposes only and not for the purpose of providing medical or legal advice. You must make your own judgment regarding whether you should pursue any of these treatments or purchase CBD in your jurisdiction. Or you should contact a medical provider to obtain more specific guidance, or an attorney to obtain more specific guidance regarding CBD.

Have you heard of or received a successful treatment that is not listed above? If so, we would love to hear about your experience and add it to our list. Please contact us and let us know!

This content was created for general informational and convenience purposes only. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking advice because of something you have read on this website.

While Project FAVA strives to make the information on this website as timely and accurate as possible, we make no claims, promises, or guarantees about the accuracy, completeness, or adequacy of the contents of this site and expressly disclaim liability for errors and omissions in the content of this site. No warranty of any kind, implied, expressed, or statutory, is given with respect to the contents of this website or its links to other Internet sources.

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