Hi,

Have you reported this to your surgeon? If not, that would be the first place to start.

If you have done that and it is thought this is lymphedema, the you should locate a lymphedema therapist near you for an assessment in order to put together a plan of treatment.

It is possible for patients to swell in the neck, dependent upon where the nodes were removed, radiation etc., however you need to make sure nothing else is going on . Please make you treating physician aware of this immediately.

Hi,

Traditional lymphedema therapy provided by a professional trained in treatment of the head and neck can be helpful to reduce swelling, but daily at-home self-care, including self-massage, is needed to maintain any gains from the professional treatment. Many patients find that seeing a therapist for initial volume reduction and instructions on how to conduct self-care is very helpful. Some patients are also finding that using an advanced pneumatic compression device at home is a real assist to managing the swelling.  A lymphedema therapist, or your primary care MD can help you determine if such a device might be of assistance to you. It is also important to maintain a good level of physical fitness and a healthy diet.

Hi,

It is very important that you see a lymphedema therapist who has had additional training in treating head and neck lymphedema very soon. This person can help with immediate treatment and a longer term plan of self- care. Self-care is critical to managing this condition for the long-term.  Some patients have found that Yoga (not hot yoga) makes them feel better,especially the breathing components of yoga. Other are also incorporating an advanced compression pump into their daily self-care after working with a trained lympmhedema therapist.

Hi,
Please contact me directly at .(JavaScript must be enabled to view this email address) so we can discuss this.

I would look for a physical therapist who is also certified as a lymphedema therapist.

Hi,

Have you spoken with your surgeon about this? Contacting the person who did the surgery is usually the place to start when trying to determine potential reasons for changes in your body after surgery. If there is no lymphedema expert near you, you might consider seeing a gynecologist for an evaluation. A physical examination and testing is likely needed to answer your question.

Many things other than lymphedema can cause lower back pain and the cause dictates the treatment. Please see your primary care doctor to determine what may be causing the pain and to obtain specific treatment recommendations.

If your brother has not seen a wound care specialist (doctor) I would suggest that he see one for specific recommendations. It will be very important for him to follow directions from the specialist.

Hi, Unfortunately I am not personally familiar with far-infrared light. You should be able to email the corresponding author from some of the studies and ask them.

Maintaining a healthy body weight is very important, not just for lymphedema, but for your overall health.  I cannot tell from your question if the weight is related to an overall increase in body, or fluid etc.

Regardless, please see your primary care provider to discuss your concerns so a treatment plan can determined. A referral to a dietitian for nutritional education might also be helpful to you. I will add that if your health allows,  some people find that swimming can often be done, when walking etc. is difficult.

Hi,

In the case of node removal and breast surgery on both sides, there is no clear answer to this question. I usually ask if one side had had more “treatment” than the other and suggest if that is true you use the side with the least amount of treatment. If the “treatment” was equal to both sides the next step is to determine if you are easier to stick and get vein access in one arm or the other. If one side is easier to get blood from , then you could use it to decrease the number of sticks etc. If there are no differences between your arms, then ask that the smallest size needed that can be used to draw blood or give fluids etc. be used and try to not have tourniquets on any longer than absolutely necessary.

In general, exercise is good for the lymphatics as it helps move fluid, but it is important to not over do it. Listen to your body and if it says you are overdoing it, reduce the level or intensity of the exercise.

Swimming is recommended by some therapists, as long as you don’t wear compression garments in the water and stay out of hot water. When walking, wear your sleeve.

Consult with your LE therapist who knows you best for specific recommendations for you.

Hi,

I do not know why carbs might be a trigger for you, but since you know they are it would be very important to get with a dietitian who can help you learn about low-carb diets etc. Your primary care doctor should be able to assist you with this.

Hi,
Things change over time.
I would suggest you see a certified lymphedema therapist for an evaluation and treatment recommendations.

Hi,
I am sorry to hear of your difficulties.

Many things can cause swelling. Unfortunately, it is very difficult to tell what is going on based upon your email and having never seen you. Has your family doctor given you a diagnosis of lymphedema? Or referred you to a bariatric surgery center for a consult? If the doctor who sees you has referred you to a bariatric center, then perhaps you should go there for a consult.  Most of those centers conduct a thorough medical work up prior to making any recommendations. You are not agreeing to surgery just by going there, so given the limited information I would suggest you follow-up on your doctors recommendation.

Swelling can at times extend from arms to other parts of the body.  Anytime you have changes in patterns of swelling you need to see your doctor, which apparently you have, so glad to hear a clot was ruled out for you. 

Given what you say is the location of the swelling, if you have any possible dental concerns, I would also get a dental check-up, just to make sure you do not have any oral health concerns.

You should see your lymphedema therapist when the swelling changes too, as you may need additional professional treatment and new or modified self-care instructions.

I am very sorry you are having this problem and need surgery.

I do not know how extensive your surgery will be or if it might require “cuts” that overlap with your previous surgical sites. Thus the risk is hard to determine. Will you have physical therapy after the surgery? You may want to consider having your arm measured before surgery and then have it measured after you have had time to heal from the surgery. A PT could do this for you. That way you would know if you were running into problems.

It might be, but you will need to see someone who can actually examine you to know for sure as other things can cause swelling. Are you near a lymphedema therapist or PT? I would encourage you to see someone soon.

HI,

I do not know where you live, but you should see a lymphedema therapist for an evaluation. Go to this link at LE&RN;‘s website for information about finding a therapist.

https://lymphaticnetwork.org/living-with-lymphedema/find-a-lymphedema-therapist

HI,

I am not an expert in all pumps, but more advanced pneumatic pumps are generally believed to more closely replicate techniques used by lymphedeama therapists than the basic pumps.

When using pumps it is important to work with a lymphedema therapist to make sure the results are as hoped.

Lymphedema doesn’t migrate in that manner, but it would depend on the underlying cause—if the disease affects multiple regions of the body, it can appear at different times.

I wish I could give you a reliable answer based upon your location. In general, internists, dermatologists, oncologists, vascular MDs, and physical medicine physicians, among many other specialties, should be knowledgeable about this condition.

This must be very frustrating for you. If you have not seen a lymphedema therapist, you might want to see one and get their opinion on your swelling and how you might manage it.

I would suggest you meet with your primary care doctor and and ask for a referral to a lymphedema therapist in your area for an assessment. This should facilitate determining if you have lymphedema and development of an individualized plan of treatment. No two patients are the same and that is why it is very important to have someone examine you and determine the next step.

Hi,

I believe you should see you doctor for an evaluation of your legs and feet. Anytime you have problems moving around because of your swelling you need to see a doctor. There may not be anything to worry about, but that can only be determined by a physical examination, which cannot be done via the internet. I wish you all the best.

Thank you for your questions. Have you seen a healthcare professional for an examination and work-up for your swelling? It is possible to have both lymphedema and other conditions that might cause swelling and it is very important to determine the type of swelling, as treatment differs. Lymphedema itself is a progressive condition that will worsen over time if you do not have treatment and conduct regular-care. If you do not have a certified lymphedema therapist working with you to manage your condition, it is very important that you find one and work with them. I wish you the best.

Hi,

In general, the most important thing a person with lymphedema can do to help reduce the negative impact it may on their life is to work with a trained lymphedema therapist and consistently perform self-care as recommended by that therapist (wear garments, etc).

Many people with lymphedema are very physically active. Exercise is good for you, but it needs to be done with lymphedema management in mind. It does not sound like your current approach to running is working well for you and I am very sorry. I would suggest that you see your primary care physician to make sure there is nothing else causing your fatigue etc.. If medically cleared, then I believe you would benefit from seeing a certified lymphedema therapist for an assessment and that you should work with that person to develop 1) a plan for self-care and 2) an approach to “retrain” you body to run. and work with the therapist to assess your capacity overtime. You may have to start slowly and work your way up, but the end if you do this, you may begin to feel more in control and more like yourself. I do not know where you live, but if there is a lymphedema support group in your area, you may also find that helpful. Thanks for sending this and I wish you well!

I am so sorry to hear of your problem. Have you gone back to your plastic surgeon to discuss these problems?

You can go online to https://www.ncbi.nlm.nih.gov/pubmed/ and type in head and neck lymphedema in the search field. This will bring up several articles and any of those that say Free PMC Article can be viewed by the public.

Yes there is some research on symptoms related to head and neck lymphedema. These are some that have been found but not every patient has all of these symptoms:
Tightness
Pain
Swelling
Hardness
Fatigue
Difficulty moving head and neck
Problems swallowing solids
Feeling tired
Something stuck in one’s throat

You may need an evaluation by a physician who has expertise in lymphedema to determine if this indeed your problem. If you are in Minnesota, there are some physicians in that state who have this expertise. You are welcome to contact me to discuss this at .(JavaScript must be enabled to view this email address). edu

Hi Lynn,
I am not familiar with Ginger Oil as an integrative care option for lymphedema. There is however a developing body of evidence to support Yoga (not hot Yoga) as a potential integrative approach to help with lymphedema. There are also integrative health centers in many parts of the United States, some of whom have lymphedema therapists on staff in addition to physicians etc. These centers might be able to assist you with developing a more holistic approach to managing your swelling. It is very important that you consult your lymphedema therapist or primary care provider before embarking on holistic methods, just to make sure you do not have any issues that would contradict such approaches. I hope you are able to find something that works for you.

As per Dr. Mortimer-

The large lump that has grown on the inner thigh is presumably a large lymphoedema fold although without imaging such as ultrasound examination one cannot be sure. Treating lymphoedema folds is difficult and needs very skilled bandaging. It is important to ensure there is no (over)weight issues as that makes these folds more likely to develop, and more difficult to treat. If all else fails one might have to consider liposuction but everything depends on the circumstances of this patient. Reconstructive lymphatic surgery is unlikely to be an option.
The biggest lymphoedema centre in the UK is at St George’s Hospital in London. The lymphoedema Support Network in the UK (http://www.lymphoedema.org/lsn) should be contacted for advice”

Response from Dr. Ridner:

“Thanks so much for your question and congratulations on 15 years of survival and being lymphedema free. I am unaware of any new information regarding air travel, or any older evidence based information that addresses this concern. Some lymphedema at-risk patients chose to see a certified lymphedema therapist prior to flying and purchase a well-fitted compression sleeve to wear when flying. This is the most common risk reduction practice for air travel, though it is not based on research. If you think you would like to obtain a sleeve,  please see a certified lymphedema therapist and be fitted by someone who is experienced in measuring arms for the compression sleeves, as a wearing poor fitting sleeve is believed to put you at risk for lymphedema. For more information on this please check out http://lymphnet.org/resources/position-paper-lymphedema-risk-reduction-practices. I hope you enjoy you upcoming travel!

I am sorry to hear about your problem, but commend you for asking this thoughtful, very important question. Unfortunately some types of primary lymphedema can be passed on through your genes. I strongly suggest you locate a genetic counselor to assist you in determining if this might be a risk for any children you may have.

The short answer to your question is yes, potentially life-saving radiation can cause lymphedema. A recent publication, Lymphedema Predictor Factors after Breast Cancer Surgery: A Survival Analysis by Monleon, Murta-Nascimento, Bascuas , Macià, Duarte, & Belmonte addresses radiation in survivors of breast cancer and the role it plays in lymphedema. You can read a summary of this article at http://www.ncbi.nlm.nih.gov/pubmed/?term=lymphedema++and+monleon.

There is some scientific evidence to support that low level laser may be helpful to some people, though results are never guaranteed.  You can go online to : http://www.ncbi.nlm.nih.gov/pubmed/ and search for” low level laser and lymphedema”. There you will find a few studies that are free to read that will help you understand low level laser and lymphedema.  If you decide to try a laser it is very important to locate a trained lymphedema therapist with experience in using the laser for lymphedema to provide the treatment.