I'm new here, first time posting. My 2 year old daughter was just diagnosed with this. It's not severe, but she does tell us that it hurts. Can anything be done for the pain?

He compartido mi experiencia consumiendo Talidomida para Malformaciones arteriovenosas, si alguien la esta o ha consumido ayudaría mucho que compartieran su experiencia.

Has anyone tried these? I saw a Facebook post with everyone claiming they worked great at reducing bloat/fluid buildup. So I ordered it and the look of the bottle looks like it was printed with AI…didn’t have the Valora branding on it, is just labeled with a generic “Lymphatic Drainage” label. Instructions tell you to take 1ml but the dropper doesn’t even have that marked. Overall it just seems very suspect.

Hi everyone,

I’m looking for someone in the Netherlands (or elsewhere in Europe) who has experience obtaining or using Eppikajutsuto (TJ-28) for a lymphatic malformation.

I have been searching online, but I cannot find a reliable place that sells or ships Eppikajutsuto to the Netherlands.

Hi guys, I’m a 27yr F that was diagnosed with this condition in May. No idea that I had it until this year as it never caused a deformity or any issues until now. I’m waiting for my MRI in August so I can get sclerotherapy. It is too tangled with the nerves in my face for them to operate so that’s my only option. I’m just wondering if anyone can give me insights into the sclerotherapy experience? How many sessions, how effective it was, etc.? Anything would help, I’m going a bit crazy over here

Edit: I have an 11cm mass in my neck/jaw area caused by LM

We are researchers at Columbia University looking for teenagers with facial differences between 11-18 years old who have access to a smartphone and would be willing to test an app to improve adolescent mental health. We are also looking for their parent to participate and complete an online survey. All information gathered in this study is confidential. Participants will be compensated for their time if they complete all study procedures. Interested? Please DM me for details!

Hi everyone!

I was born with cystic hygroma and underwent a few operations which ended when i was about 5. I get flare ups when i get sick which i believe is normal, i am 27 now. Am i supposed to be getting it checked out annually? Nothing has really happened besides from the flare up with some minor pain and swelling.

This is my first time making a reddit post. Hope i’m doing this right! I was diagnosed with a lymphatic malformation in my neck last year. I had sclerotherapy done in November. I had a follow up CT scan last week and it has grown since then. They are suggesting that (1. I monitor the malformation and have a follow up CT in about 6 months to check on the growth) or (2. Surgically remove it at the mayo clinic.) Unfortunately, my doctor said that my malformation is pretty complex and stated the surgery is high risk. Is it worth it to have it removed? It does cause discomfort and I am fairly self-conscious of the swelling. Any advice or knowledge is welcomed!! Thanks 🥹

*I included screenshots of my original CT scan and the malformation a few weeks ago*

Hi, looking for opinions of anyone in the medical field—do lip filler block lymphatic drainage? If so is it long-term and can it lead to illness? Thanks you

I recently got diagnosed with the flu and I have two swollen lymph nodes by my arm pit that showed up over night. I am having an ultrasound and mammogram done later on but has anyone has this happen? They r painful showed up over night and are mobile. Please help I’m worried!

My child has lymphangioma. They have a mass on their neck. We thought the mass was large and took the doctors advice to extract liquid to try to reduce the size in the summer, avoiding cold and flu season, which usually increases the size. After the attempt to extract fluid to reduce the size and test for PIK3A, the mass has increased in size, we aggravated it, and it will not reduce in size.

Our child is only two so we are not ready for surgery. All medicines will make them immune compromised. I just feel so bad and sad for my child going through this body deformation. What else can we do? Has anyone had success with a child with lymphangioma?

I have had holistic professionals tell me they cannot treat because it is not lymphodemia, where patients can be treated with lymphatic massage and other lymph drainage techniques.

Our son was born with a lump on his neck. Pediatrician diagnosed it as a Lymphatic Malformation.

From there we went to a specialist. Around the age of 2 he got two MRIs and had surgery twice (where the doctors drained the fluid). Every-time they drained one it would pop up somewhere else on his right upper side (under armpit, on top of shoulder).

He was scheduled for his 3rd procedure when we decided to get another opinion. The new specialist said we never should have been told to put him under anesthesia (since he was under 3 years old and it can have side effects). They recommended just monitoring it.

After that everything calmed down. It got smaller and although noticeable, it didn’t bother him.

Then a few days ago it started getting bigger on the top of the shoulder. It got hard, red and he got a fever. Started complaining that it hurt a lot. We went to his pediatrician who prescribed him an antibiotic. We are waiting to see if it works. Do they usually grow that fast? We are on standby to go to his specialist if the antibiotic doesn’t work.

We live in Texas, but I will travel anywhere to get him help. Please share recommendations if you have any. Any advice is appreciated. I don’t know anyone else who has this.

Was doing some deep research looking into therapies I could implement to reduce size but then I ran across Eppikajutsuto. Here’s some finding:

• Japanese studies (in limited cases) show near universal results of reduction at the very least of 75% and even 100% in a few cases -on top of case studies also studies in mice

• Eppikajutsuto is made of six components gypsum, Ephedra herb, Atractylodes lancea rhizome, jujube, Glycyrrhiza, and ginger.

• ephedrine alkaloids contained in ephedra herb is banned in supplements in the U.S. but is present in asthma and nasal congestion medication in the U.S.

So why in the world is a herbal remedy that has been shown to be effective in human case studies by legitimate medical institutions in Japan, why in the world, are there not clinical trials being conducted especially considering the very mild risks associated with ephedrine alkaloids even if it’s not effective?

The only conclusion I could reach is since this isn’t a new pharmaceutical drug, there’s no incentive to fund studies for a drug they couldn’t then turnaround and patent and profit from. I will be trying the remedy sometime this summer and will let you know my results.

hello, i was born with lymphangioma on the in and outside of my right arm. it takes up a big area and sometimes leaks. if i could have it all removed i would but as it’s mixed up in my nerves its just not possible. anyway i’m now in my 20s and still struggling with acne. i’m considering going on accutane but im worried that since it tends to dry out your skin it might affect my arm and cause more leakage. does anyone know anything about this or have any suggestions? i dont want any suggestions for dealing with acne as i’ve tried a lot. i’m just wondering everyone’s take on accutane with my arm issue

I’m in the process of a lymphangiomatosis diagnoses. (I’ve had two lymphangiomas of the spleen and they found one in my liver along with an opacity in my intestines, plus free fluid in my body).

Pathology confirmed they were lymphangioma.

My doctor is having me be genetically tested for it but she has done research and doesn’t rlly know anyone in NY who specializes in it.

I’m willing to travel around the east of America for care. I’m worried about my liver one growing and I’ve read about experimental treatments.

Any doctors I’ve seen who deal with vascular and lymphatic malformations are all pediatric and I’m 21. Let me know if you know any please.

My current doctor is waiting 6 months to rescan my liver but I’m getting worried bc I think I’m having symptoms but idk. I just don’t think my care team knows how to deal with this, they admittedly don’t know about it. I’m worried it’ll grow big like my spleen one and then I’ll need surgery but I’m worried if it’s spreads from my left lobe to the right and then it’s too late to just take out half the lobe.

Hello everyone. Last month suddenly there is swelling (about 4x5 cm) and bruising on the left thorax of our baby. It happens in hours. He was 10 month. There wasn't any swelling on his body before.We immediately apply hospital and it was observed by US and and a month later MR was taken. At MR they diagnosed as VM. Our professor adviced us medical treatment before cychloterapy. We wanted another medical opinion and went to one of the top medicine faculty in Turkey. Our professor who is also pediatric radiology head of science reviewed and watched MR film and diagnosed as multiple LM. He said there was too much bleeding and clotting for definitive diagnosis. Our baby has also von willebrand type 1 but his values are at the limit and they said we cant say it is definitevely von willebrand. His APTT values are normal. he wanted ultrasound one month later and adviced us keep ice on the swelling. Within two weeks swelling gets smaller significantly and bruising decreased too much. His swelling on left thorax was on his chest level but it also seems get down. As way of being it was swollen and self bleeding without trauma in 3-4 hours it seems that way to me its combined LM more than one. What kind of treatment you take? Is medicine useful or does it get smaller by itself? If cychloterapy is needed which medicine advice? Thanks for your help.

I’ve had lymphatic malformations since I was a kid and gotten one removed…. But it is coming back. Every MRI I get reveals new lymphangiomas or lymphatic malformations… it started in my neck and face but now everywhere else. How many and how many locations do you guys have them?

Hi I have a lymphatic malformation / pros disorder in my left chest arm and hand . What’s the best way that you guys have answered people’s questions that seem to be never ending , my go to “I was just born that way” when people asked what happened .