Hi everyone, I’m brand-new here and grateful to discover a group of people who are experiencing similar things. It can be a lonely journey when no one understands or even knows what these malformations are. Mine is a complex Lymphatic Malformation behind my left knee. By the time I got a correct diagnosis (took 8 yrs), it had grown quite large and was diagnosed after it caused an extensive lymphatic infection in my calf in December. It is 13 cm x 6 cm x 4 cm. I looked into Johns Hopkins and also Dr. Wayne Yakes at Swedish Medical in Denver, CO. We decided to go to Denver because it’s closer, and he came highly recommended.
I just completed my 6th embolization (ethanol) treatment, and while they feel confident there will be improvement, I’ve had some nerve problems in my foot and I’m generally not feeling much improved at this point. My treatments have been aggressive, back-to-back, 2 every other week for the past 5 wks. I know it will take time for swelling to go down and to start feeling the benefits of having it shrink. So far they have pulled about 100 mL of fluid out and injected alcohol into those various compartments, so hoping for some relief as those cells collapse/die. He’s also done many alcohol injections into the surrounding lymph vessels that created this monster.
Does anyone else have a malformation behind the knee or in leg? Or LM only? Curious how others have responded to ethanol embolization treatments or anyone who is a patient of Dr. Yakes?
This is definitely a complicated and strange thing to have. It can be discouraging because no one understands or has seen them before. My mother actually had an AVM in her brain that was surgically removed 30 years ago, and she has had no problems, so she was blessed with a wonderful doctor apparently. She’s now considering getting an MRI though just to check up on things, ha.
Would be grateful to connect with others, thanks for reading and for any insight into embolization therapy, Dr. Yakes, leg LM’s/Other, or anything of pertinence.
Hey there -
I have a venolymphatic malformation in my left thigh. It affects both the venous and the lymphatic systems unfortunately. I am 32 years old now, but have been dealing with it since the age of 15. At that time, doctors just thought I had lymphedema, so I've been wearing a compression stocking for the last 17 years. The stocking still keeps it pretty controlled and I remain active as I'm an avid runner (which I think has helped my VM over the years).
I haven't been without complications though. I went to see Dr. Yakes in 2013 because of some lymph drainage coming from my groin. It of course was caused by the VM. He did an MRI and suggested he wouldn't do anything at that time...but to keep a watch over it and to just live my life how i am currently.
Now 3 years later, I had a cellulitis infection in my thigh where the VM is located. This was back in February of 2016. I was hospitalized for 2 days but i'm so afraid i'll have a recurrence. While i was in the hospital, i had another MRI of my leg and sent the images to Dr. Yakes. His office staff called me to tell me my malformation had grown since the last he saw me, and recommended I come back to see him.
I have yet to schedule a 2nd trip but am VERY curious how serious your case is, what the recovery is like, your history, etc.
I hope you are doing well, and hope to hear back from you.
-Nick
Hi Nick! Thanks for your message, sounds like our situations are very similar. I first noticed symptoms back into 2008 (pressure behind my knee, a swollen cyst-like pocket back there, and some tingling and numbness in my toes) and saw an orthopedic. He did an MRI and diagnosed me with a Baker cyst. We watched it for a few years, he would pull off fluid and it would fill back up. I just managed it and the discomfort grew over the years, but I just put up with it.
In December, I also developed cellulitis in my calf and was on IV anabiotics and miserable for a week. I live in a small town, so nobody could seem to figure out what in the world was behind my knee, even after an MRI. They diagnosed me with a Synovial Sarcoma, an aggressive cancer, at first. Thankfully one radiologist up in Billings Montana had seen one before and diagnosed me with my LVM. It’s extremely large now and completely wrapped around my sciatic nerve, arteries and veins going down into my calf and foot. It is pretty much inoperable, so other treatments with sclerosing agents was my only option. My greatest fear was having recurrent cellulitis infections in my leg (still is)… I am a full-time wedding and portrait photographer and very active, so for me that’s something I cannot live with.
I found Dr. Yakes thru researching online (I also sent my scans to Johns Hopkins and had them confirm my diagnosis just for peace of mind) and because Dr. Yakes was close to home and seems to be one of the best there is for these rare diseases and treatments, it was an obvious choice for me. I began treatment on April 4, 2016 and have had 6 ethanol embolizations so far. My LVM is very large and will require an unknown number of embos in order to sclerose all the compartments, cysts and vessels, and get to a place where it’s under control (I hope and pray!). As for the treatments themselves, I think having anesthesia multiple days in a row is the hardest part on your body (and the steroid treatment after, ugh), but overall they haven’t been horrible. Not fun either. Pain the day of and after, then just mostly discomfort with swelling and some pressure. Gravity for me is the worst, so elevation has been very helpful. It’s hard to stay still though for me. 
I have some bruising from the treatments, and some minor outward swelling after. The swelling from first treatments did compress my post tibial nerve more, which was already in contact with my LVM, so that has been a little scary. My foot was numb for a few days after my first 2 embos, and after a month I now have a combination of numbness/tingling/pain in my foot. Time will tell if it’s permanent or not.
Otherwise, I feel very confident in Dr. Yakes care; I really couldn’t ask for a better experience so far. I’ll just do whatever it takes to get this thing under control so I can live my life. Where are you located? I wish you all the best! Let me know if you have Q’s.
Dr. Yakes and his entire staff there at Swedish have been absolutely amazing. They are quick to respond, follow up with all questions and problems after you leave, and genuinely care about you as a person. He and his PA’s have been wonderful to me and my family. Although it’s going to be a long process and I know I have many more treatments because of the sheer size and the fact that you can only do so much with each treatment, but I’m determined to stay optimistic. Mine, like yours, is not really visible outwardly, yet it has taken over the middle of my leg. So far so good, let me know if you have more questions and I’m happy to answer and update as I go along if you wish. I have 2 more scheduled for next week and then I have to take a break for my busy season. Praying I can keep up and do my job. That has been the most stressful part.
Speaking of, do you have a recommendation on compression stocking brands? That is something I’m going to get at my next visit before I start back to work.
Good to hear back from you! What's your name by the way? I don't think I caught that originally.
Anyways, i'm located in Louisville, Ky. I have been everywhere since the age of 15 - Mayo Clinic in Minnesota, Boston Children's Hospital and even Los Angeles (where I had a major surgery due to other complications I've had that were caused by my LVM...it's pretty personal, but was the best thing I've ever done). One of my docs suggested going to see Dr. Yakes, as he is one of the most knowledgeable docs when it comes to AVM's and the treatment. I was very impressed during my first visit in 2013. And every time i call the office, everyone is so attentive and helpful.
I'm scared that as I grow older, my LVM is going to continue to grow. The last thing i want is a huge mass in my thigh because I didn't take the steps needed to try and eradicate it. My vascular doctor here in Louisville suggested i not do anything for it right now, as i keep it pretty controlled with exercise and the stocking...but I still fear for the future, and am considering taking another trip by the end of the year to see Dr. Yakes to get a thorough update.
The stockings I have been wearing since i was 15 was Sigvaris, however I now wear Juzo brand. Have you never had to wear them? That's surprising to me if you haven't. How do you control the swelling? The type I like are the ones without the silicone band at the top of the thigh. It's really annoying to me and makes my leg feel very heavy. You'll probably also want the open toe ones I'd imagine...they're the lightest weight of any stocking i've worn. I wear 30/40 compression which is the highest they go. If i don't wear my stocking when i'm up on my feet, my leg will swell pretty bad. The only time i don't wear my stocking is if i'm running/exercising or just chilling out at home or in bed.
I'm glad we've connected. It's great to hear from someone who is in a similar situation as myself. I don't come to this site much, but get regular emails when people post things. Your post made me want to reply.
Hope you are having a good weekend.
-Nick
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I am 60 (too old for the dye in MRI and arteriogram) and have a huge VM in my left thigh and upwards. On a professional's advice, I tried a compression binder with velcro short-straps. Mine was for the thigh, but there are others for different segments of the leg.
These wraps are designed for LMs as an "easier" alternative to wrapping. Lymphedemaproducts.com has them online if you want to take a look. Circaid or Solaris brands are most popular.
It were not helpful for my VM; acted like a tourniquet and fluid filled up above the compressed area. They are mostly used for LV and lymphatic massage is useful also.
Interesting, Nick. I am new to the compression world, not having LM but VM of leg. You say you take off the stocking when running. I don't run, but I wore them for fast walking. Now I wonder if that is the reason I developed such swelling above the compression binder.
We ladies have the option of wearing a garter belt with thigh highs. Tho, really, I'd think a man would wear whatever helped.
Nick, I am reading and re-reading the posts here. When you say "exercise" and the stocking help, what kind of exercise? There are PTs who are certified in Lymphatic treatment; I am
wondering if you sought the services of one of them.
I always felt that walking was so good for my leg VM. It seemed that the tight muscles helped compress the VM. But that all changed 12 yrs ago; when my condition worsened.
The lymphatic component really is a struggle for you guys! Fluid aspiration, infections; the VM is bad enough for me to handle. All the best.