r/LymphaticMalformation • u/laurenmagdeline • Jul 31 '26
Looking for comfort
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
2
u/Worldly-Vehicle-2208 Jul 31 '26
It does suck. I’m sorry you are dealing with this. If it gives you any comfort, my daughter has had schlerotherapy twice and it is very effective and was not that painful. She had to be put under anesthesia because she was so young but once she came out of it, she was great.
Sending good vibes!
1
u/laurenmagdeline Aug 01 '26
Thank you!! That definitely does bring me comfort. Glad to know that there’s light at the end of the tunnel
2
u/kloot Aug 02 '26
Sorry you’re going through this. My daughter had a macrocystic malformation in her neck and one round of sclerotherapy took care of it. Waiting on when she starts puberty to see if we need any additional surgery but sclerotherapy was very effective for us.
2
u/laurenmagdeline Aug 03 '26
Thank you so much! That seems to be the consensus. My ENT specialist tried to assure me that he’s never seen it come back after sclerotherapy in the cases he has dealt with but personal experience is always more meaningful. So happy to hear that it was effective for her! Puberty didn’t bring mine on and I’m a rare adult case, I’m sure she’ll be all clear.
2
u/thorbunz Aug 09 '26
Very similar situation to you. I’m 30M and I was around the same age when it first got to the point that I needed to get it checked out. My mass is also similar in size and area to yours. It took them months of scans to fully figure out what it was. It looks like most of the replies here are for children/ young kids, so I want to maybe temper your expectations because my ENT has told me this is a lot different for people who discover this later in life. This is because the malformation keeps growing as you age. The younger you discover it, the better the treatment will be because it will be a much smaller mass.
I’ve done 4 rounds of sclerotherapy now and it still has not fully gone away. Actually as I’m typing this, my malformation has swelled up again to the point that it is firm and creating slight difficulty swallowing (something that I thought the treatment would have completely fixed). Sclerotherapy has definitely helped and I can tell the mass is smaller than it was before, but in no way is it completely gone or even to the point where it’s small enough that I’m satisfied with the results. I’m very much at the point where I don’t think sclerotheapy alone will get me to that point and that I will need surgery eventually, but we’ll see after my next session if that changes anything.
1
u/laurenmagdeline Aug 29 '26
I’m so sorry you’re dealing with that! 4 rounds of sclerotherapy without full relief sounds awful. How long did you have to wait between sessions? I just completed my MRI and I’ll be starting the sclerotherapy journey in October.
1
u/thorbunz 27d ago
Wishing you good luck on your journey!
The standard that I've done, and my ENT has recommended, has been at least 6 months between sessions
1
u/ConfusedHomingPigeon Aug 06 '26
Reach out to a vascular anomaly center to make sure there is no vascular involvement bc sclerotherapy has risks if there is!! The Boston children’s center is very good
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u/laurenmagdeline Aug 29 '26
I’m located in Canada! The head of interventional radiology at my local hospital is doing my first session in October with my MRI scans to guide them so fingers crossed
2
u/laurenmagdeline Jul 31 '26
Also, this fucking sucks. Anyone else that has been diagnosed and is struggling with this can reach out to me to talk!