Hi everyone, hope you're all well. Thought I'd give an update. So I had my AVM in right cheek removed by Dr Suen on 13th August in Little Rock (thanks for the advice), he removed the entire masseter muscle and most of my parotid gland on that side. The surgery went really well, even better than expected. The AVM was successfully removed though I still have to get scans in 6 months to be sure then yearly after that. Also most of my facial nerve function was preserved, there is slight nerve weakness along my lips probably only noticeable by me and will recover in time. Dr Suen is an extremely amazing surgeon, incomparable in both in professional skills and patient care!
When Dr Suen removed my masseter muscle with the AVM, he cut a dermis-fat graft from my tummy and put it into my cheek to fill the space. There was great amount of swelling in my cheek in the first 3 weeks post-surgery, sometimes so much that it felt like the skin was going to burst. Then at end of the 3rd week, the bottom of my sutures on my cheek did burst and started to gush out a lot fluid, which turned out to be fatty tissue from the fat graft. Dr Suen advised that fat grafts shrink by 40% and most people's body absorb that but with mine it leaked out of the wound. It was a scary experience, but the upside is that since it started leaking, the swelling and pain is gone and my face looks much better.
It's now 2 months post surgery, and my face looks almost back to normal and I've got my stamina back :) But my wound is still leaking liquid fat though much less now. Some days it will seem like it stopped leaking and the wound closed up, but another part of the wound will open again and leak more. My cheek also feels very hard over the fat graft area. I'm seeing a local surgeon for follow up, he thinks that a fat graft as big as the one I have is unlikely to survive as it does not have it's own blood supply and will eventually take months to all die, breakdown and leak out, and the hardness I can feel is scarring from fat necrosis and dead fat that needs to breakdown and liquefy, so it's very worrying to hear. Dr Suen says that it will stop leaking after the 40%, and I trust his advice over the local surgeon. I just wondered if anyone else had fat grafts done before and if they have any advice to give? If anyone's leaked like mine and how long it can leak for?
Hi! I had surgery with Dr. Suen several years ago and think he's wonderful, too. I didn't have a fat graft so I can't give you any advice on it personally. I had a skin graft and it took very well and covered an area on my scalp and ear where the AVM was removed. I still have AVM in my left parotid gland, ear and scalp so might have to have a fat graft someday. I'd tend to believe Dr. Suen as he is so experienced but make sure he knows the extent of your condition at this time. Best wishes for a full recovery!
Hi Janey, great to hear from you. Sorry things didn’t go to plan at first but sounds like you’re doing well now. My graft oozed fat for a while through some sutures but has settled down. Back out in Little Rock and seeing Doc Suen on 4th Nov with another op on the 6th. Will probably be back in the same apartment. Wishing you well, do you have to go out again?
My husband, Jeff, had a graft (from his thigh) when his AVM was resected (by a different surgeon..not Dr. Suen). It started leaking fat a couple weeks after surgery. It leaked for a couple weeks but it did stop and eventually healed up nicely. His local family doctor told him that this was very common for these type of grafts. She said that she often sees this happen with breast cancer patients who have had fat tissue grafts done after they've had a mastectomy.
Probably one of the best things you can do is invest in a wedge pillow to sleep on at night so that you can sleep on an incline (elevated). Jeff has had several surgeries and we have found that he has way more swelling when he doesn't sleep on an incline. Also, check with your doctor first to make sure it is okay to try this..but Jeff's first surgeon had us put mineral oil on the wound and the skin surrounding it. Might be worth looking in to.
Thanks for your feedback and best wishes :) Good luck with the rest of your treatment!
Hey Loulou :) Good to hear from you again too! Thanks for your advice, that's good to know I'm not the only one with leaking fat graft... How long did yours leak for? Has the wound closed up and healed now? Will be praying for your next op, you are in good hands :) There's a nice church there down the road from the apartment, real nice folks there, if you have time to check it out. If future scans don't show up anything, then I won't have to go back again.
Hi Kimi, that's really reassuring to know, thanks for sharing that information, I'm glad his wound eventually healed up nicely. How is Jeff going? Any more trips back to Little Rock? Yeah I did sleep upright for almost 5 weeks post surgery, had a really sore back from it but certainly helped with the swelling. I'm not sure if you can get mineral oil here, havent heard of it before, but will look into it.
Did you put mineral oil on the wound while it was still leaking fat? I'm putting antibacterial ointment on it and covering it with a dressing for the leakage.
He had us use a cotton swab dipped in mineral oil, and wipe it around the wound, over the sutures. Yes this was even while it leaked fat. It helped keep the skin moist and also worked well to moisten scabs so they would fall away faster as they healed.
Mineral oil is Paraffinum perliquidum. I think petroleum jelly does the same thing if you can find that. :)
Jeff is doing well! He hasn't had a trip to Little Rock since July because Dr. Suen has managed to get most of his AVM under control. What is left is in small vessels that they can't get a catheter in so they want to wait and see if they grow more before attempting to treat them. So the good news is Jeff gets a break from making trips! He is supposed to go back in the spring. We are really glad to have this break .
Oh yes we have petroleum jelly (Vaseline) here too!
I'm really glad to hear that Jeff's doing better, and that you guys get a break, enjoy every moment of it :) Will keep praying for you both
Hey everyone, thanks for your advice. My wound seem to have stopped leaking for 3 days now, hopefully it will close up and stay that way. It has been good not to have to wear a dressing on my face :)Thanks again!
I'm glad it stopped, Janey. Wishing you quick healing, and no more AVM!
Hi everyone, hope you're all doing well. Just a quick update, my surgery wound continued to reopen and leaked until almost 4 months post surgery, but has now finally closed up and healed up! My face is looking pretty good now. I am due for my first scan post op next month so fingers crossed! Thanks again for your continual prayers and support :)
Thank goodness, Janey. What a relief!
Glad to hear how you are doing Janey! I've wondered. Good luck next month!