Areas of expertise:
Professor Mortimer is Professor of Dermatological Medicine to St George’s Hospital and the University of London. He has developed the emerging area of Lymphovascular Medicine and has over 280 publications cited on PubMed. His group has been instrumental in discovering causal genes for primary lymphoedema and his current £2.5 million Medical Research Council programme grant investigates known genotypes of primary lymphoedema to better understand mechanisms of pathophysiology.
He sits on the medical advisory committee for the Lymphatic Education & Research Network (USA) and chairs their global oversight committee for the establishment of Centres of Excellence. He is founder of, and Chief Medical Officer to, the Lymphoedema Support Network, the UK patients' national charity. He is founder and Patron of the national body for health care professionals, the British Lymphology Society.
Hi professor Mortimer, I saw you about 10 years ago at parkside! I had blood tests but never received results. How do I get genetic testing now to see if my lymphoedema is primary or secondary/ likely to be inherited? Thanks
Best not conduct your personal care through this channel
Can you contact my office please and we will sort?
Dear I need help, I live in the UK and there is no real help for lymphoema. It started after my surgery for bowel cancer (stage 4). I didn't even know about it! Now i am swollen everywhere, with extremely heavy limbs. I have always been maximum 130 pounds Iamnowhuge!
Please contact the Lymphoedema Support Network which is the patient helpline for lymphoedema in the UK. They can advise you.
There are centres of lymphoedema expertise in the uk but few and far between
Your oncology specialist can refer on to a lymphoedema therapist as recommended by the LSN
020 7351 4480
Do you suggest any specific diet for lymphedema
1. the patient is overweight and a weight reducing diet is indicated because any excess weight undermines lymphatic function
2. the patient suffers with intestinal lymphangiectasia which results in poor absorption of fat in which case a low fat diet is indicated
My daughter has no working lymphatic system - it was compromised when she gave birth to her son. She is very obese - is there anything you can suggest ? I am so concerned that she will have a short life. East Sussex, UK
I am afraid it is impossible, and indeed professionally unwise, to advise without consultation. All I can say is that excess weight seriously compromises the lymph system and weight loss is mandatory in such circumstances
How can I best treat the weeping rash associated with the swollen left calf and shin?
I am afraid it is not possible to answer this question without more information and even then a full in person consultation would probably be needed to make a proper diagnosis and provide the correct treatment
Since nodular sclerosing lymphoma causes scarring to lymph nodes, if there is retroperitoneal disease, could this cause left leg swelling (particularly starting in the foot)?
In theory yes. Lymphoedema can be caused by bulk disease from lymphoma overwhelming lymph nodes
treatment of that lymphoma from radiotherapy and possibly chemotherapy.
is it true that this cannot be passed down to the male members of my family.
No, that is not true
Good day doctor. in your webcast you said there were 20+ syndromes causing primary lymphedema. Would you be able to tell the specific type i may have from my Lymphoscintigraphy results? My diagnosing doctor did not give any additional information, i am from the caribbean and have limited doctor resources.
No, it would not be possible to diagnose a syndrome from the lymphoscintigraphy results.
Diagnosing a syndrome involves obtaining clear details of the personal history/story and then examining the patient to make the diagnosis. It is a very clinical process.
I believe you mentioned there are about 20 types of primary lymphedema. Is there a place to read about them all? I am curious which type I have. Diagnosed at age 48, but now know I have had mild version since age 12. Arms, legs, head, and neck. How rare?
There are more than 20 types of primary lymphoedema. We know the gene cause for approximately 25% of all primary lymphoedemas. The scientific reference is:
The St George’s Classification Algorithm of Primary Lymphatic Anomalies.
Gordon K, Mortimer PS, van Zanten M, Jeffery S, Ostergaard P, Mansour S.
Lymphat Res Biol. 2021 Feb;19(1):25-30. doi: 10.1089/lrb.2020.0104. Epub 2021 Jan 4.
For an accurate diagnosis you would have to be seen, a careful history taken and a full examination performed, with or without further investigation, for a phenotype (category) to be declared.
If you live in the UK then you would need to be referred to St George’s Hospital in London which is the national centre for primary lymphoedema. Please let LE&RN; know where you live and we will try and connect you to an expert.
Hi, A friend’s daughter (9yrs) has just been diagnosed with Primary Lymphedema - she is awaiting pressure garments. Any advice? Links?Also-excersizes/ massages? Treatment? Any advice would be greatly appreciated (Cadi is an amazing girl who loves nature, the environment and any creepy crawlies) Thanks in advance, Mr Gareth Evans
Dear Mr Evans,
I don’t know where you live but if in the UK I suggest you contact the Lymphoedema Support Network for advice. They will probably direct you to the national centre for primary lymphoedema at St George’s Hospital in London.
I am speaking on Primary Lymphoedema this coming Thursday via the LE&RN; online symposium. Do log in
I have primary lymphedema in my left leg, I manage it well but am interested if you would recommend anyone in the UK to perform liposuction? Dr Munnoch only sees NHS patients and I wouldn't qualify. Thanks Nina
Miss Caty Milroy at Parkside hospital, Wimbledon is fully trained in the Brorson technique
I recently read article about successful blood tests 2detect lymphedema https://bit.ly/3laBkWP in stage 0 how can I get tested in UK? My dad had Lymphorrhea so higher risk; my ankle is 3cm swollen, GP diagnosed AchillesTendonitis from photo! I think he’s wrong & would like 2rule out Lymphedema.
Intense research is ongoing to find a biomarker for lymphoedema. Blood tests are not routinely available and it may still be some time before these blood tests for proteins that Prof Rockson has discovered are validated.
Currently the best way of confirming lymphoedema is through lymphoscintigraphy, a nuclear medicine test which is readily available in most hospitals
If I get a cold or do too much exercise one of my tonsils gets slightly bigger and I feel run down for several weeks. It feels like a very mild virus and can make my muscles ache. Is it my lymphatic system?
Whenever a germ (virus or bacteria) enters our mouth or nose it lands on the lining inside. It is then taken up by our our lymphatic system and transported to lymphoid organs such as lymph glands and tonsils in order to generate an immune response. That process produces many more immune cells which inevitably swells the lymphoid organ and can result in cytokine production which can make you feel unwell. Therefore what you are encountering is part and parcel of our immune defences
15 months ago after surgery for an incarcerated femoral hernia, I developed chylous ascites. Doctors here in the UK don’t know what’s causing it as we can’t find a leak. Conservative measurements have had no impact. I have zero quality of life as the fluid is crushing me. Please help
Clearly, the surgery disturbed your lymph drainage from your gut. It might be there was a problem before but the surgery acted as a trigger to expose the lymphatic weakness.
At St George’s Hopital, London, SW17 we do intranodal lymphography and can sometimes plug the leak
If your doctors contact/refer to me Professor Mortimer at
we might be able to help
I am curious if there is a treatment for the thickening of the skin caused by lymphedema that is secondary to skin Mets from breast cancer? Also if there are ways to stop lymph leaking from a forearm?
Cancer cells travel and spread preferentially via lymphatic vessels. If the cancer cells overwhelm the lymphatic vessels, they block the flow of lymph to cause lymphoedema but they also incite a fibrosis in the affected tissue to cause skin hardening. Lymph under pressure (from the blockage) also leads to tightness and thickening but explains why lymph tries to escape (and leak).
The only satisfactory treatment is to get rid of the cancer cells somehow
83 yr old mother has severe lymphodema in both legs. She has infected ulcers and is being seen in a wound clinic and home care for bandage and wrap care. Her skin is constantly leaking lymphatic fluid and has progress to her back, parts of the chest. Any suggestions appreciated.
I am afraid there is no easy answer as there could be many possible explanations for extensive lymphoedema including heart failure. Leaking lymph fluid will be because of the congestion of the fluid within the skin and surrounding tissues. Wounds just allow the fluid to escape more easily. Your mother needs a full medical assessment to answer these questions.
Sorry not to be more help
I have lymphedema with swelling that does not reduce with elevation. I get spasms of intense itching. is this a common symptom of lymphedema?
Thank you for your enquiry
No, itching is not a symptom of lymphoedema.
I would need to know more to answer but this forum cannot be used for consultation
I take penicillin vk since 2012 2 times daily 250mg. I have cellulitis usually every 3 years.Recently had 2 bouts cellulitis within 6 months. Is it possible that bacteria become resistant? Also 6 months back I started to take sertraline. I am fit. What shall I do avoid cellulitis?
Difficult to advise without consultation
In principle you should avoid any trigger factors such as athlete’s foot but in about one third of patients prophylactic antibiotics do fail
As far as we know the bacteria do not become resistant and I cannot incriminate sertraline.
I suggest an increase in dosage to 500mgs twice daily which is very safe.
I have had secondary Lymphedema for over 10 years. I have had several infections that require antibiotics. I have peeling skin on my hand that is spreading from my hand onto my arm. The peeling skin does not hurt should I be worried about this problem.? Thank you
Thank you for this enquiry
As I hope you know, cellulitis is a common complication of any lymphoedema.
National guidelines in the UK, available through the Lymphoedema Support Network’ website, recommend preventative antibiotics for more than 2 attacks of cellulitis in any 12 month period.
Cellulitis can cause peeling of the skin during recovery of an attack but should then resolve. If peeling is ongoing a dermatology opinion is indicated as there may be a skin condition that needs addressing
I am looking for information on being a maternal child of a parent with elephantitis Where can I find research and get information on this?
Elephantiasis simply means lymphoedema but is a term used in tropical climates.
I am assuming you are referring to an inherited form of lymphoedema.
If you are in the UK then please contact the Lymphoedema Support network for more information
I've had a swollen foot since the age of 30 (like my dad) and a presumably blocked, enlarged lymph node in my groin. Usually manageable but lately more swollen / painful. I'm slim and active, I have fairly regular LDM, do drainage exercises daily. Any advice? Thank you!
You almost certainly have in inherited primary lymphoedema for which gene testing is now possible,
Any increase in swelling with pain should make one think of infection
(Please refer to guidelines on cellulitis: http://www.lymphoedema.org/cellulitis)
I suggest you see somebody familiar with cellulitis in lymphoedema
My 15 year old daughter is a normal weight (166cm/58kg), with a very slim upper, but disproportionate legs, which have become painful recently. I suspect lipoedema-there's a family history of lymphoedema. Once diagnosed, is it recommended to commence treatment as young as possible? I have not seen aGP yet.
The diagnosis does sound like lipoedema but it can be difficult to distinguish from lymphoedema although lymphoedema is not usually as painful. It is important to undertake quantitative lymphoscintigraphy as this investigation can be helpful in distinguishing lipoedema form lymphoedema. If this is not possible I suggest consulting a MLD or Lymphoedema therapist in your area as they can usually differentiate one from the other. Alternatively see your GP and ensure they have read the Royal College of GPs details on lipoedema
I know that I have lipodema due to the way my fat collects and the fact that both my mother and grandmother were diagnosed. I have been to my GP but they have absolutely no knowledge of lipodema or resources to help me. What can I do?
There remains, sadly, little knowledge amongst the medical profession of Lipoedema (Lipedema)
There is a learning module for GPs on the Royal College of General Practitioners website. You should point that out to your GP as well as the patient’s organisation Lipedema UK (http://www.lipoedema.co.uk)
You should go back to your GP with this information and/or access a local Lymphoedema or MLD therapist (via the Lymphoedema Support Network’s helpline) who will be able to provide help for you.
(assuming you live in the UK)
What is the difference between subcutaneous and dermal?? Doctor says subcutaneous thickening can be caused by other medical conditions but DERMAL thickening is caused only by lymphedema.. is that true ??
The dermis is essentially the skin capped with a layer of scale (keratin) known as the epidermis (the outer covering to the dermis).
The subcutaneous tissues consist mainly of fat and reside beneath the skin, hence the name sub (beneath) cutaneous (skin).
In lymphoedema both become thickened. Thickening (increase) of subcutaneous tissues will mean an increase in fat so obesity as well as lymphoedema can do that.
Can lymphedema of the arm cause areas of paler skin? I notice my hand seems lighter color then my non lymphedema hand and also an area on forearm. Regular Dr and Dermatologist say nothing to worry about. Just different skin pigmentation. Is this something to be concerned about?
Skin color is largely determined by melanin e.g. black skin has a lot of melanin and skin tanning increases melanin to increase pigmentation. Complete loss of melanin occurs in vitiligo such as Michael Jackson had. I am unaware of lymphedema affecting melanin.
Also influencing skin color is haemoglobin in blood. Lymphedema thickens the skin making it more difficult to see blood through the thickened skin. Therefore lymphedema skin might be paler at sites of worse swelling.
Past sun damage confuses the situation and will contribute to changes in skin color on the outside of the forearm and back of hand but not the inside of the forearm where sun damage is minimal
I have mild lymphedema in LUE. Seems to be a slight paler color on an area of the LE arm. PCP says nothing to worry about probably just skin pigmentation. Derm dr says most likely pigementation as we age. Could this be caused by lymphedema? Worrisome?
Sorry but do not understand
LUE=Life, the Universe and Everything?
LE means LUPUS to me
PCP=personal centred plan?
Are patients with secondary lymphedema (lower vs upper extremities) considered a risk group or not and why? Any expert advise highly appreciated. Many thanks
No, patients with secondary lymphoedema should not be considered an ‘at risk’ group. The danger from Covid-19, as far as I know, is pneumonia/lower respiratory tract infection. Secondary lymphoedema patients are no more at risk of respiratory tract problems than the general population providing they do not have lymph problems relating to the respiratory tract.
I am a CLT in Wisconsin, could you tell me your thoughts on the best way to measure for breast edema if my organization does not have a bio impedance machine? Thank you.
I am not an expert on breast oedema, as there isn’t usually a surgical solution. I would suggest routing your question to Prof Mortimer.
How bad are 15 hour flights for primary lymphedema in both legs? I really want to show China and Japan to my mum but she has lymphedema(has compressiongarments) and flights are too long. We live inUK, should I notconsider it at all? Best advice to fly as safe possible?Thankyouverymuch
Long haul flights are a challenge for anybody with lymphoedema but no reason not to go. Swelling will probably increase temporarily. To minimise this, wear compression garments, keep moving as much as possible and avoid alcohol. On arrival, if swelling has increased, spend time getting legs to recover by walking in a swimming pool followed by elevation.
Go for it!
I am mother to a boy, age 9 who has a lymphatic malformation of the tongue. Are you aware of anyone in the UK that is using Sirolimus to treat LMs of the tongue? I'm interested as it seems a less invasive type of treatment.
This is one area of lymphatics in which I am not so knowledgeable. This is because lymphatic malformations of the tongue (lymphangioma) are generally seen by oral surgeons/paediatric surgeons not by us. Nevertheless the published medical literature suggests that sirolimus may be effective. There is a risk from the immunosuppression from the sirolimus but on balance of benefit/risk definitely worth trying.
Can walking for non stop 2 straight hours without compressions cause your leg to swell up .. is that a typical trait of a lymphedema patient?? My friend is eager to know he has lymphedema stage 0
A strenuous 2 hour walk could cause lymphedema to get worse because the demands on muscles will result in more blood, and therefore fluid, in the muscles. This extra fluid will have to be drained by the lymphatics. Compression plus exercise should avoid problems because of greater encouragement for lymph drainage.
Client has wounds into leg, tracks draining blood and lymph fluid also has produced calcium crystals that come out of wounds, happening over a year now. Suggestions for care, and cause of calcium crystals? Goes to wound clinic but they have no answers.
I have seen chunks of calcium extruded form leg ulcers. These chunks of calcium represent phleboliths (small clots in superficial veins)which have become calcified and then the body wants to get rid of them so they are pushed out of the skin mainly through a wound but can break through intact skin. I have no other explanation
Is it possible for bacteria that caused one cellulitis attack to be not fully eradicated by antibiotics, and linger or remain latent and cause future cellulitis attacks? Are there any tests for this? What specialist should a patient see for this?
Yes, it is perfectly possible that bacteria from one attack of cellulitis in lymphoedema are not fully eradicated. In my view that is why an attack can re-emerge in a matter of weeks after a previous attack. I believe it is related to the altered immunity that exists in tissues affected by lymphoedema.
Unfortunately there are no tests to prove this (yet)
You need to see a specialist who is experienced in lymphoedema.
Please see http://www.lymphoedema.org and click on cellulitis on the lymphoedema support network webpage
Can lymphedema be caused by obesity? If so, can it be managed by losing weight?
Whether obesity actually causes lymphedema is unclear but it can certainly lead to lymphedema, make it worse, and make it more resistant to treatment. Furthermore, losing weight in anybody with lymphedema who is obese, can improve the swelling substantially.
Hello I was on Ramipril and Amlodipine for high BP, and I have arm lymphodema following breast cancer treatment. I read an interesting article you wrote about the contra-indication of CCBs and so switched to Lercandipine. This is still a CCB though so should I avoid CCBs altogether?
Calcium channel blockers paralyse lymphatic vessel pumping but also generate extra lymph production by causing relaxation of peripheral blood vessels. The effect is much greater in the legs than the arms due to the greater effect of gravity in the legs. Amlodipine is one of the worst offenders and can cause oedema in 50% of patients receiving the drug. Lercandipine causes least likelihood of oedema but my advice to anybody with lymphoedema is to avoid CCBs altogether as there are many alternatives for BP treatment.
Could you explain the best practice for treating weeping lymphedema wounds? Also, is Aquacel XL+ safe to use for long periods? Finally, if recommended, what is the best type of absorbent dressing to use for major leaking?
Dr. Mortimer’s Response:
Weeping Lymphoedema wounds represent lymph leaking through broken skin. The underlying physiology needs to be understood and addressed first. For example high pressure within the veins will increase lymph production and pressure of lymph in tissues. The most important treatment is compression. The dressing is relatively unimportant so a simple non-adherent dressing usually suffices.
I've read that applying Manuka honey can help heal weeping lymphedema wounds. I've also read about medical grade honey being the better choice. Does it work and are both types of honey safe to use?
Dr. Mortimer’s Response:
Manuka honey, eliminates bacteria, resolves chronic inflammation, and promotes faster wound healing. Its potency against antibiotic-resistant bacteria, such as MRSA, makes it a particularly invaluable tool in an age where more strains of resistant bacteria are developing. To what extent other honeys do the same is unclear but probable. There no data on the effect on honey on weeping wounds but if infection is contributing to the weeping then, in theory, honey should help.
What could cause the healing nicely weeping wound on my leg to literally overnight start to leak so badly it requires changing super absorbent pads 2-3 times a day. My calf went from 25" to 30" and feet increased in edema too. 2 weeks now.
I am assuming you already have lymphoedema. If so the weeping is lymph coming out through the wound. It is worse because there is more oedema and the pressure of lymph in the leg is higher. This could be for a number of reasons including infection. A proper clinical consultation is required to give you the best advice
I have folliculitis & have been given antibiotic lotion, then 3 months of antibiotics & within a week of finishing, it came right back. Is there something in the way of a supplement or topical in the natural world that might help. I was antibacterial lotion to wash my face.
Dr. Mortimer’s Response:
There are many different causes for folliculitis such as infection, acne, occlusion with creams, and friction to name but a few. Antibiotics such as a tetracyclines can help both infection and acne. If the folliculitis comes straight back then the cause is still active and needs to be identified and addressed otherwise the folliculitis will not get better.
I am diagnosed with primary lymphedema in my lower limbs. It started in my left leg in 2012 and is now in both legs. I have had 10 Recurring fever rash episodes That last for six days which episodes. WBC count within normal limits. Any thoughts?
Thank you for your enquiry
It is likely you are suffering recurrent cellulitis, a well known complication of any form of lymphoedema. Because it may be the same infection never clearing, prophylactic antibiotics are recommended.
Please refer to the UK national guidelines for management of cellulitis in lymphoedema
Please google ‘lymphoedema cellulitis guidelines’ and click on the pdf
I have a large Birthmark that covers my torso region. When I first start exercising after not having done so in a long time, I seem to swell up, this fluid migrates around my body dependant on how I'm orientated. The doctors in the hospital were baffled. Is this lymphedema?
I am sorry but I did not receive the email alert and so have only just seen this since logging in to the LE&RN; website
The answer is that your birthmark could well be a lymphatic malformation. Often little fluid filled blisters appear on the skin surface and can weep fluid. At times they can contain blood. Ask your doctors to consider a lymphatic malformation or a mixed (blood and lymphatic) malformation.
Best of luck
Hi Dr Mortimer Im a new breast cancer nurse and I am actually trying to locate where we can purchase some of your books on self management and treatment for our breast unit, I have tried to contact the publishers with no success, thank you
Thank you for this interest.
The book entitled ‘Let’s talk Lymphoedema” is available through Amazon or through the publisher Elliott & Thompson:
Elliott & Thompson
27 John Street
London WC1N 2BX
T: 020 7831 5013
As for the small book on self management published by Beaconsfield publishers I am not sure because the publisher has retired
Could you please tell me why my legs are unbearably itchy on removal of my Memory Aloe vera compression stockings? I cannot wear them any longer. Developed lymphoedema in both legs following surgery for removal of varicose veins many years ago. Have had cellulitis once. Had MLD many times.Thank you.
The likelyhood is that you are experiencing symptomatic dermographism which means that release of pressure is inducing an urticaria or histamine reaction (nettlerash). An anti-histamine e.g. citirizine should improve symptoms and confirm the diagnosis.
Hi I have secondary lymphedema in my left arm & side chest area (breast cancer). I have poison ivy on my face near the eyes & have a bit under my left arm. Before calling my primary dr are there treatments I should avoid? Thank you
Not really, although steroids by mouth for any length of time would be unwelcome
What is the best way to remove an actinic keratosis on the hand of my lymphoedema arm, that would cause the least inflammation? Last time it swelled like a boxing glove. I've had several pre and in situ skin cancers treated before so would be best if I could.
There is no easy way! You could afford to leave alone and treat only if the keratosis progresses or becomes tender. 40% of keratoses can disappear spontaneously.
If you have to treat there are a number of various chemo/immunomodulating creams but probably the most gentle way is to apply 5 fluoruracil cream on two consecutive days each week for 6 weeks, or less if inflammation starts to develop before finishing the course.
Dear professor Sometimes I met in my clinic patients with cellulitis not responding to usual antibiotic according to BLS e.g. ampecelline How you would to treat those patient,by antifungal,topical antibiotic has rule? Thanks in advance Ahmed sawaby
One needs to aware that tissues affected by lymphoedema have sub-optimal immunity because of disturbed immune cell trafficking. Consequently the immune cells do not clear infection properly and it is very likely that ‘resistant infection’ means infection is not being eradicated. Current advice is to give prolonged course of antibiotics for recurrent cellulitis and even prophylactic antibiotics, and even then infection may still recur. There is no simple answer
lymphoedema.org and click on cellulitis
My 34 year old son has been diagnosed with Genital Lymphodema recently. He has severe swelling with penial deformity. He has has been advised to wear cycle shorts & to wrap his penis with a bandage to aid drainage. What is the prognosis especially with him being so young?
Thank you for your enquiry. There are many different causes of genital lymphoedema and further investigation should be undertaken. For example, without any prior history of lymphoedema it is likely to be caused by an inflammatory process. Such inflammation could be caused by infection or non-infective inflammatory disorders such as ano-genital granulomatosis. He needs to see a specialist with knowledge of this problem. Cycle shorts and other forms of compression will not work unless the underlying cause is addressed. I hope this helps.
My aunt experiences exacerbations of her lymphedema when she needs treatment with steroids & antibiotics for a flare up of asthma. Can steroids cause this exacerbation of lymphedema? Thanks
Thank you for this enquiry
Steroids by mouth e.g prednisolone, cause retention of water in the body and so can exacerbate lymphedema by increasing lymph production.
I have had Lymphoedema in my legs following lymph node removal for cervical cancer 24 years ago and now need a knee replacement. I’m concerned that my surgeons have not recommended antibiotic use pre and post surgery . Can you tell if you think antibiotics are indicated.
Thank you for your enquiry
The information I give is based on opinion as there is no evidence to answer this question.
If you have had cellulitis before then definitely cover the period of the surgery with antibiotics ( 24 hours before and 1 week after).
If you have never had infection then it is a difficult decision but probably safer to have them.
It is also important to try and get the swelling down as much as possible before surgery and perhaps have lymphedema treatment post surgery as well to control swelling. That is our standard practice at St George’s, London
Dear Prof. I had bilateral axilla removal in 2002. I have had lymphoedema in left arm since that time. I was diagnosed with it in my right arm in 2016.(14 years on). Is this a new incidence or is it an aggravation of a general latent condition in your opinion? Is it always latent when you have axilla removal or is it dependent on external factors plus genetic disposition? Thanks.
As per Dr. Mortimer-
Thank you for your enquiry. Removal of even one lymph gland from the armpit (axilla) increases the risk of lymphoedema. Onset of lymphoedema after lymph node removal is variable. It can be immediate or may be delayed. The reason is not always clear. Therefore, I suggest onset in your right arm could have occurred at any time. Factors like infection or trauma (accidental or from further surgery) often trigger the onset. I also believe there is a genetic predisposition but there is currently no evidence to confirm that view.
Hope this response is understandable
I have recently been diagnosed with secondary Lymphoedema due to a biopsy in 1992. My left leg is affected and I’m using compression tights to try and control it but at the age off 44 and a fit person who likes to run when possible I’d like to look at surgery if possible. The LVA I’ve seen offered through a private practice in Oxford looks to identify where the blockage is and bypass the flow. This surgery is relatively new but not uncommon in the private sector, I’m unsure of the nhs option. Do you have any knowledge on the success rates as it’s an expensive option? Many thanks Simon
Apologies for delay but have ben on holiday.
I am very familiar with the Oxford Lymphoedema Practice team. They have far more experience of LVA surgery than anybody else in the UK. Their results are as good as any published data. By that I mean that the microsurgery can improve swelling but probably by no more than 15-20% on average. It is not a cure and most patients still have to wear a compression garment. For those patients who suffer recurrent cellulitis it also appears to reduce infection rates.
The Oxford team have tried to get the procedure approved on the NHS but they have failed on many occasions. Occasionally it has been done on the NHS at Chelmsford hospital.
Hope this helps
Professor Peter Mortimer
Hi I have primary lymphoedema in my left leg which occurred during pregnancy 15 years ago. I have regular MlD but am looking at surgery. In your opinion would you recommend having VLNT and have you seen positive results from it. If so who would you recommend I used? Thanks NIna
By VLNT I presume you mean vascularised lymph node transfer, otherwise known as autologous lymph node transfer.
The jury is still out as to how effective this surgery is. The average volume reduction is less than 10% so it will not cure your lymphedema, furthermore there is a small risk of causing lymphedema in the region from where the lymph nodes are taken. Therefore proceed with caution. Recommendations regarding who to see depends on where you live.
Thank you for the enquiry
Professor Peter Mortimer
This is a question from the UK, I am so sorry to be a bother to you but I just can't seem to get any answers from the UK so in sheer despiration I've had to come and ask you this ... please can you give me any information on Lymphoedema in the stomach .. my Lymphoedema Clinic have told me that they will no longer deal with me now that I also have Lymphoedema in the stomach (I also have Bi-Lateral leg Lymp hoedema .. they have stated to me in a letter that 'they only do legs' ... I have now been without any form of treatment since last August ... I don't know what to do ... my legs are getting worse as is my stomach and now also my buttocks. .. please can you tell me if there's anything at all I can do to help myself Many Thanks SuzeJo
Dear Sue Jo,
Thank you for your enquiry to LE&RN;. Much depends on what you call “lymphedema in the stomach’ as I doubt anybody could diagnose lymphedema of the actual stomach. If you mean lymphedema of the abdominal wall, then that is probably linked with your leg oedema and that would be treated in the same way i.e. massage and compression (abdominal binding), but investigation to find out why it is getting worse would be sensible. If you mean lymphedema of the internal organs then that needs specialist investigation. The St George’s Hospital lymphedema clinic in London is experienced in undertaking such investigations and would be prepared to see you if your lymphedema clinic referred you.
I have primary lymphedema in my right leg. My husband won a trip to Hawaii with the company he works for. Would it be ok to use a self tanning lotion on my leg that has lymphedema? Thank you, Angela
Yes, I am sure that use of a self tanning lotion would be safe. These products have an active ingredient which combines with dead cells on the surface of the skin to create the colour. It naturally disappears after a few days. What you might find is that your lymphoedema leg goes a different colour from you other leg due to the thicker skin in lymphoedema.
Therefore I suggest you do a trial before you go
Professor Peter Mortimer
My son was misdiagnosed at birth with a subcutaneous haemangeoma in November 2015 on his left lower thigh. However, following a flare up due to infection in July 17 & Feb 18, he was sent for an MRI which led to an assessment of extensive Lymphovenous malformation. Plastics department said that they cannot perform surgery due to size of malformation. The Interventional radiology department is to perform a biopsy tomorrow. Following that we are to receive treatment options. My questions are: what treatments are there for this condition and what are the risks? Is this condition treatable? is there a specialist hospital/ consultant that we should be referred to given we think that the current practitioners have not got the relevant experience? How can we push for referral to the experts? we are willing to travel (live in Birmingham).
Apologies for delay but I have been away without a computer.
Your son’s malformation may well be purely lymphatic and not lymphovenous as it is often impossible to distinguish between the two.
I would not recommend biopsy as that may risk infection, poor healing, lymph leakage and, besides, it is very unlikely to change management.
Surgery is also unlikely to solve the problem as it is very difficult to remove these malformations (birthmarks) and they can simply return. If they cause no symptoms I often do nothing. If they have quite large cysts containing lymph then injection sclerotherapy by an experienced radiologist is probably best (bit like injecting varicose veins).
happy to see at St George’s in London
Professor Peter Mortimer
I have had lymphedema in my left leg for almost 20 years. The skin around my toes has been dry for some time and has gotten much worse in recent years. I recently began applying Eucerin lotion morning and night. It seemed to help for a while, but now the skin seems to be getting even more cracked and dry and I don't know what to do! Do you have any tips for reversing and preventing this? Thank you!
As per Dr. Mortimer
The first consideration must be for a fungal infection and there would be no harm in buying terbinafine (Lamisil) cream and applying at night for 2 weeks. More likely is dryness related to the hardening of skin associated with the lymphoedema skin changes plus effects of cold winter weather (assuming you are in northern hemisphere). 25% urea heel balm (Flexitol) would be worth using as well as bandaging the toes at night if they are swollen
Prof. Mortimer, reading your posts for the first time on this site(LSN member UK, and secondary lymphoedema sufferer for 13 years). Interesting reading your take on surgery care for lymphoedema patients concerning tourniquets. Two years ago, I had a cardiac arrest at home(one of the lucky ones, I survived!) I was taken to the Freeman Hospital in Newcastle, and had an angioplasty and stent insertion. As we are "trained" to do, I mentioned that I had lymphoedema and therefore shouldn't have treatment on my affected right arm(crazy when my life was at stake, but you do this automatically). They said "don't worry, we can treat cellulitis if it happens!" I had an an incision in my right wrist, and the angioplasty followed. They then fitted an extremely tight plastic tourniquet to seal the artery. I watched it closely for 24 hours or there abouts, expecting problems. Next day, it was removed, and all was well. No effects whatsoever! Lucky or what?
Thank you for your enquiry
First of all I cannot criticise your doctors one bit as they quite rightly prioritised and your lymphedema came a distant second when it was a matter of life and death!
It is true to say that the risks of worse swelling or cellulitis following a sterile puncture are extremely small but if you happen to be the one who gets that complication then it is not acceptable.
As for tourniquets, again, there is a theoretical risk of worse swelling because of the sudden flush of blood and fluid into the arm when the tourniquet is released but as with a blood pressure cuff that risk is very small.
I would not describe you as lucky to have had a cardiac arrest but you would have been very unlucky to have suffered worse lymphedema
My dad who is 73, had shingles in July 2016. This resulted in neuropathic pains, which now has lasted a year. Nothing helps for pain relief, but what I am enquiring about is a swollen area filled with fluid under his armpit. It came after the shingles. Doctors in Holland are not sure what it is. He had physio for it, which has not reduced or changed it.It causes pain when he walks or moves. Also his skin remains extremely sensitive. Is he at risk for infection? Will the fluid stay or solidify? What is it? He never had this before. In your expertise, could you please advise me what this could be and which specialist should he refer himself to? He does take meds as he had a heart attack 3 years ago. He does not drink, eats healthy, cycles and walks. I live in the UK. He lives in Holland. Thank you.
Thank you for your enquiry
It is difficult to give a diagnosis without seeing and examining your father. Shingles does not cause a lymph problem. He needs an ultrasound examination or a CT to determine the nature of the swelling so that the correct treatment can be given.
The skin will remain sensitive because of the nerve damage from the shingles.
Your other questions are all dependent on the diagnosis.
If he is in Holland and his doctors think this is a lymph problem then I suggest he consults with Dr Robert Damstra in Groningen
Sorry not to be more help
Dr Mortimer I have developed lymphedema on both ankles at the age of 18. I am healthly and do not suffer from any other condition. Nobody in my family has this condition but I need to identify if It is primary or secondary Lymphedema as this increases the chances of giving birth to a child with the symptom. Is there any specific tests that determines if my condition is primary or secondary?
As per Dr. Mortimer-
A: This is likely to be primary lymphoedema (PL) because of the age of onset and because there has been no known damage to the lymph system. Many forms of PL are not inherited but the exact risk to offspring is dependent on the type of PL you have. This can only be determined through an expert who can characterise the type of primary lymphedema you have and if appropriate gene testing.
Hi. I am asking the question on behalf of a family member. As a result of being diagnosed with cancer of the uterus approx 14 years ago they underwent a full hysterectomy, they subsequently had chemotherapy and radiotherapy. The lymph nodes were removed from the left leg area. Over the past 4 years lymphodema has become an increasing problem down the left leg. A large lump has grown on the inner thigh and treatment is having very little impact. They are under the care of the Christie Hospital but due to this condition being extremely under funded there are very few options. They currently wear a compression stocking every day which is bearable however trying to obtain a second stocking has become impossible as the nurses never get the measurements right. Very frustrating!! They have visited a clinic in London to investigate the possiblity of lymph node transplant but apparently this is not an option as it has been stated there is a lot of scar tissue?? Whatever that means. I would like to know if there is anywhere in the UK that specialised in lymphodema and what does your research suggest for long term treatment? Many Thanks
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”
Since uterine cancer diagnosis and treatment 5 years ago, I have had recurring infections. For the past two years I have experienced rapid onset of cellulitis and lymphedema. I am concerned because the cellulitis comes on so quickly as does the swelling. My doctor has me on daily antibiotic but I do not feel any better. Do you have any suggestions? I am frustrated. Thank you.
As per Dr. Mortimer-
“Recurrent infections are a common occurrence with lymphoedema. It is also very common for the effects of the infection to develop rapidly. Patients can feel fine one minute and within 15 minutes feel ill with chills and flu-like symptoms. This is because of the effect lymphoedema has on immune cell trafficking and function within the swollen region. Research has shown that it is not helpful to give antibiotics only when infections occur. The infections need to be prevented and the recommendation is for prophylactic penicillin. Advice for patients on this subject can be found at
My question regards the skin lesions that appear to be a hyperkeratosis that are commonly seen particularly in cases of lower extremity lymphedema. Are these keratoses similar histologically to actinic keratoses which may develop from overexposure to sunlight? Do they simply represent a hyperplasia of the keratinocytes or a metaplasia of the keratinocytes in which their cell structure undergo change.
The hyperkeratosis seen with lymphoedema reflects an increase in the horny layer (keratin) on the surface of the skin. It is related to the increased thickening of the skin which is often called elephantiasis because it represents elephant skin. The hyperkeratosis is different from a keratosis which is a benign tumour on the surface of the skin usually resulting from sun damage.
Therefore the hyperkeratosis seen with lymphoedema is simply an excessive production of mature keratin from normal keratinocytes. A keratosis is related to a hyperplasia or dysplasia of the underlying keratinocytes which are the cells responsible for producing the keratin.
Well I am planning a trip and it takes 24hours to get there. I had the lymph node taken out of one arm pit and bc and I have a compression sleeve and I can wear it just incase but what else should I do. Is there a big risk of my arm swelling. Is there something I should worry about in Thailand, should I take shots.
Patients with existing lymphoedema do find that it temporarily deteriorates during a flight. However it should return to its former condition within 24 to 48 hours of arrival providing there are no complications eg infection. For patients with existing lymphoedema the recommendations are to wear the compression garment, perform regular exercises during the flight, elevate the swollen area as much as is feasible and ensure no dehydration. The problem with air travel is inactivity and the cabin pressure. On arrival it is worth undertaking exercise to stimulate lymph drainage.
Having psoriasis flare-ups on my elbow of my bad arm is challenging. The meds for it don't work for long. What advise do you have to keep the flaking & rawness at bay?
In general lymphoedema does not affect psoriasis and therefore one would treat the psoriasis in the normal way with ultraviolet light therapy as creams are not that effective. Psoriasis could be,in theory, worse on a limb affected by lymphedema because of the alteration to immune cell trafficking from the compromised lymph drainage. Therefore it makes sense to treat the swelling as well as one can and ensure no infection (as infection can exacerbate psoriasis)
20 years ago was the first time the back of my head swelled up. It would get really swollen, hot and skin was very tight. It would spread all over the back and into the temple region between 4-12 seconds. After a week or two, it would drain down my neck and out my shoulders. This continued a couple times a year, every single year. Last June, the swelling got worse and reached my face, swelling one eye shut. It no longer drains, as the back of my head and both sides of my neck down by the collarbone have big squishy lumps. In August and continuing, both my armpits and down both sides of my body have swollen up and have stayed that way. My arms, fingers, legs, knees, ankles and toes also are a bit swollen. From what I was told by a doctor was that I have Primary Lymphedema with Angioedema. However, other doctors aren't sure because I don't fit in the "norm" of Lymphedema patients since it's affecting my entire body, literally from head to toe. I've seen so many doctors (ENT, Immunologist, Neurologist, Vascular Surgeon, Internalist) and have every single one of them stumped. Do you have any idea or opinion or thought as to what these conditions are that are happening to me? For some reason, the doctors are not coming to any kind of conclusion to my situation. I look forward to hearing your thoughts. Much Thanks, Joe
I am not convinced from your history that you do have lymphoedema with angioedema. Angioedema manifests with bouts of swelling which settle within minutes or over a few hours. It is thought to be allergic but no cause is usually found. It is certainly inflammatory and will respond to oral steroids. There are reports in the literature of recurrent angioedema giving rise to lymphoedema. However under those circumstances the lymphoedema swelling is persistent and usually affects sites such as the skin around the eyes, mouth or ears. I would agree that your circumstances do not fit in with the norm either for angioedema or lymphoedema and therefore it is difficult through an online response to advise. My suggestion would be to see a lymphoedema physician if possible.
I am a left breast cancer survivor of 9 years. I had a lumpectomy and 3 sentinel nodes removed. I have also had a parathyroid removed ( benign) and have Hashimoto Thyroiditis. I want to undergo a trigger finger surgery on my left hand and am concerned about Lymphedema. The procedure involves a wound and a tourniquet on the arm/hand I have always been advised to protect from such things. Can you comment on the risk and any possible options to lessen the risk? Say if a tourniquet was somehow not used. Is the wound made and the tourniquet used the same level of risk? I don't want to trade a painful trigger finger for Lymphedema and I just don't know how to calculate the risk?
Thank you for this interesting question. You are right in saying that guidelines recommend avoidance of needle puncture/surgery/tourniquets in/on the at-risk arm following breast cancer treatment. The concern is that swelling could be precipitated. Furthermore there is always the risk of infection (cellulitis) which could also precipitate long-term swelling.
Therefore in an ideal world one would advise against trigger finger surgery but one has to do a risk/benefit analysis. If there is no alternative to your trigger finger then you should undergo surgery. However I would ask your surgeon if it can be done without tourniquet (assuming the tourniquet is around the upper arm or forearm). It may also be worthwhile covering the period around the surgery with antibiotics although there is no evidence that this is necessary.
I am afraid I don’t know the risk analysis of inducing lymphoedema but I would expect it to be very low with surgery alone and higher if the tourniquet is added.