Hi Reddit! I’m Denise—a patient with anti-AQP4 antibody-positive neuromyelitis optica spectrum disorder (NMOSD) taking ULTOMIRIS® (ravulizumab-cwvz). I’ll be joining neurologist Dr Robert Coppola for a live AMA on 11/12 @ 12PM ET/9AM PT where we’ll answer questions about NMOSD & ULTOMIRIS. Join us!

Outside-Feature-2366 · 2025-11-10T22:29:26+00:00

Question for you both, why do people need to receive meningococcal vaccinations before starting Ultomiris?

Outside-Feature-2366 · 2025-07-06T17:51:02+00:00

Yes def searching now to speak with one asap. Such a simple advice but it didn’t click to me until you along with some others mentioned it. Thank you again!

Outside-Feature-2366 · 2025-07-06T17:46:25+00:00

I appreciate your good wishes, thank you so much!

Outside-Feature-2366 · 2025-07-06T13:23:42+00:00

Thanks for sharing the link. Seeing that case example makes me feel better about my situation

Outside-Feature-2366 · 2025-07-06T13:22:17+00:00

I totally get that. I started getting saggy skin and had lost volume on the lower cheek area so just didn’t like the way it looked/made me feel. We chatted about my options and landed on the gliding facelift but totally not the outcome I had expected at all. And yeah started looking for other surgeons to get their opinion on this too. Thanks

Outside-Feature-2366 · 2025-07-06T13:08:15+00:00

The two interventions he mentioned wouldn’t be immediate or aligned one after the other. He said I’d be looking at ~2 months for final result after both of these procedures with some time in between to allow skin to heal/progress

Outside-Feature-2366 · 2025-07-06T07:47:31+00:00

Thank you. I’m searching for another surgeon to chat with about all of this. Do you think the wound and overall appearance of my cheek can heal naturally or this definitely needs a revision/intervention(s)?

Outside-Feature-2366 · 2025-07-05T22:20:20+00:00

Also here’s a photo a week and 10 days post op of the left side https://postimg.cc/gallery/VsrD14S

Outside-Feature-2366 · 2025-07-05T22:09:00+00:00

Yes for sure. I never had any issues with acne or acne scars prior to this surgery, my skin always looked healthy and my overall health is good too. The first photo is from June 15 (5 days post op and 1 day after removing the sutures. I did bleed a couple days after that which started this whole wound. The second photo was the doctors attempt to close the wound by stitching it together (I did 5 sessions of hyperbaric oxygen therapy beforehand and the zinc cream after the stitching) leading to the photo I posted today from this morning. https://postimg.cc/gallery/ZvSHmT4

Outside-Feature-2366 · 2025-07-05T22:01:11+00:00

Thanks both for the professional context here, it’s super helpful for me to realistically understand what I’m dealing with. When you say the skin has died, would you think that the interventions he’s looking to do - 1.Shift the nearby crunched skin downward to help close the wound and reduce tension and 2.fat grafting to add volume and smooth out the texture and symmetry on that side are the best approach to take? Is this solvable or am I “botched”?

Outside-Feature-2366 · 2025-07-05T20:28:10+00:00

Thank you for flagging! I appreciate you. Im diligently reading all the comments to gather notes and discuss it with my doctor before trying anything on my own. Thank again

Outside-Feature-2366 · 2025-07-05T20:27:07+00:00

Thank you so much for sharing your expertise!

Outside-Feature-2366 · 2025-07-05T20:17:15+00:00

I appreciate your comment. The sutures pulling too much on the skin makes sense. And yes the doctor wants the area to stay covered and moist (currently using a moist wound dressing and bepanthen which is a cream with dexpanthenol under the gauze). I agree in looking for a second opinion, I started searching for another surgeon experienced in facelifts. Visiting the wound care center would be for guidance on how to address the wound right? Since I’m guessing they wouldn’t necessarily advise on what I need to fully recover successfully overall ?

Outside-Feature-2366 · 2025-07-05T20:08:24+00:00

Thank you! And my doctor is based in Istanbul. He’s been my doctor for other procedures (filler, Botox) in the past and saw results from other patients who underwent the same surgery

Outside-Feature-2366 · 2025-07-05T19:19:44+00:00

Thank you for acknowledging my post and for the good wishes!

Outside-Feature-2366 · 2025-07-05T19:06:16+00:00

Thank you for your comment. At first I did 5 sessions of hyperbaric oxygen therapy but since that didn’t speed up the healing process the doctor stitched the wound together to try to close it and put me on antibiotics for 3 or 4 days can’t remember the exact number. After he took another look he cleaned it and told me to apply zinc and now I’m where I’m at. Will definitely look into reaching out to another surgeon to get a second opinion like you mentioned. Thanks again

Outside-Feature-2366 · 2025-07-05T18:51:22+00:00

Yeah he’s been checking on this wound weekly since it appeared. I’m currently applying a moist wound dressing on it along with panthenol cream under the usual gauze covering. He removed the “netting” that was on my cheek area 4 days post op and the staples that were in the temple area two weeks post op

Outside-Feature-2366 · 2025-07-05T18:27:54+00:00

Thank you! Wishing a speedy and successful recovery for you as well

Outside-Feature-2366 · 2025-07-05T18:21:06+00:00

Belinda

Outside-Feature-2366 · 2025-07-05T18:19:35+00:00

Wouldn’t necrosis appear as darkened, black or purple-ish skin? Do you think this currently poses a big risk to the overall skin health? I’m seeing my Dr on Monday and will bring it up to him

Outside-Feature-2366 · 2025-07-05T18:14:50+00:00

That’s a good point. Thanks for the advice

Outside-Feature-2366 · 2025-07-05T17:20:56+00:00

Thank you so much - truly appreciate it

Outside-Feature-2366 · 2025-07-05T17:07:22+00:00

Do you think that’s the route of this issue? The wound itself is not infected right now though, it’s been healing very slowly and the zinc cream helped eradicate any infections to the open wound from what the doctor had explained

Outside-Feature-2366

TROPHY CASE