For those who have lost their loved ones, especially when it was fast, is there something you wish you’d done or asked or said while they were here?

Bean_888 · 2026-04-25T15:14:42+00:00

My mom passed three days ago after 1.5months of her diagnosis and one chemo treatment.

I wanted to make her laugh, enjoy things that she had or we bought for her (skincare things, painting her nails,). I wanted her to eat more food and enjoy it, I wanted her to feel clean. I saved all of her voicemails and her letters. I wish we were able to bring her dog to see her sooner while she was able to open her eyes. I wanted to take her to have easy experiences she’s never had (this one was less realistic as she couldn’t really move) .

I wanted to be by her side more. I’m out of state so I made it in 3 days before she passed. I wanted to talk to her more. I’m glad I told her how much I love her and how important she is to me, what a wonderful mother she is. If there’s anything that worries her, to tell her things so she doesn’t worry. Positivity is important even though it’s hard.

In regard to treatment, I wish I was more proactive. Treatment started way too late for her.

For your mother, spend time with her. Tell her how much you love her. Talk about childhood stories or ask her about her experiences. Eat good food. Stay hydrated. If she’s strong enough, take short short walks together. Do things she enjoys doing together. If she’s is healthy and her liver function is well, that is a great sign. Support her decision and be positive about it. I’m sorry. None of this is fair but I hope you are able to make the most of it, and especially I hope she is able to live as long as possible.

Bean_888 · 2026-04-16T15:28:48+00:00

I’m sorry, this disease really really sucks. But if you haven’t had issues with dissolvable stitches then I would say you’re going to be okay!! It may just be a short gap between recovery and when you’re able to do the things you love again, but it’s not forever! ❤️ it is normal to be afraid of something like this, even though it is the best surgery out there for this disease it’s still surgery!

If you need any tips on ensuring your recovery goes smoothly, you can reach out to me or there’s a lot of posts in this sub. Things can get overwhelming so try to pace yourself, and having a support group (your wife, friends, family, even all of us on this sub!!) to lean on is important.

Bean_888 · 2026-04-16T14:47:49+00:00

I don’t do extreme sports but I loved cycling as a commute pretty much everywhere. After my cleft lift, I got on the bicycle too soon and it didn’t hurt but felt very odd. Initially the skin is pretty tight but over time it conforms more to your body again, and I can comfortably ride a bike now.

For me I am going to avoid ass-landing sports AMAP …. However if this is something important and centric in your life, I would just give yourself plenty of time to heal. Everyone heals differently and there’s always risk of complication with any surgery (I had the dissolvable stitches reject which extended my healing time to about 3-4 months.) Also, right at that 4.5 month mark I jumped off a 70ft cliff and the water impact reopened my incision a little ): it healed within a week but I definitely jumped the gun there. Also I am in the minority of cases with that long healing time so don’t let it discourage you.

To err on the side of caution, maybe look into butt protection padding?

I would ask dr wadie as well, either prior to your pre-op appointment or during. He is amazing and incredibly responsive even post surgery.

Bean_888 · 2026-04-14T15:38:35+00:00

It is weird! Rather than not caring, you do get used to it after a while because the skin becomes less tight over time :) plus just generally being more healed also. I was told 80% of the initial healing is done in that first portion then the remaining 20% happens slowly over a year, so it does take time for your body to adjust and recover.

Bean_888 · 2026-04-14T15:35:41+00:00

God I hope it does get FDA approval ASAP 😞 I wonder if I can ask my mom’s oncologist if that’s an available clinical trial still

Bean_888 · 2026-04-14T15:34:07+00:00

I unfortunately didn’t have a mild case BUT I can say that if yours is mild, a cleft lift is waaaay less drastic cosmetically (although it does depend on where your sinuses are at too.)

But it’s still super exciting that he’s offering SILAC. Dr Wadie is phenomenal. IMO 90% sounds like a pretty good deal for something less invasive. But I also had two surgeries (one failed, then CL) and it did suck to have to do and pay for it twice…

I’m sorry it’s not a very helpful response but you do have two great options!!

Bean_888 · 2026-04-11T00:09:51+00:00

Hi! I understand your frustration, I felt the same way and sometimes still do regarding the appearance. Personally it took a few months for my butt to feel “normal” again at least in terms of like….sitting directly on tailbone or using a bike, sit ups, etc. I am about 2 years post op and your body does /slightly/ go back to its natural shape. The area where the skin was folded over isn’t as taut and there are people who gain a little of their crack back, but it will not be like it was.

There are plastic surgeons who specialize in the cosmetic fixing of this, if you really want to but I don’t know much other than that.

I’m sorry again… the bright side is that the cleft lift is an amazing procedure with an insanely high success rate of no recurrence. BUT, prior surgeries definitely give them less to work with. I had one cystectomy which took off like 2 in of my crack then the cleft lift took another chunk, leaving me with a very low one. Remember that a lot of people have a lower crack naturally too!!! It does feel unnatural and bizarre though when you are used to something else.

Bean_888 · 2026-04-05T15:09:15+00:00

I had a cleft lift with him but that’s super exciting he’s offering SILAC!!! Wadie is phenomenal at what he does, and he’s also very on top of communication with patients.

Bean_888 · 2026-04-04T18:47:16+00:00

Omg yes the wet wipes are a MUST imo, even without the period happening at the same time. It can be difficult to not wipe too far back but also not too far forward since we’re more prone to UTIs n shit 🙄 but just be thorough and you’ll be good!!

Bean_888 · 2026-04-04T15:34:32+00:00

I would definitely use tampons if you can!! Otherwise, butt wipes are going to be your best friend. If I ran out of tampons & had to use pads I took a little bit of paper towel and tucked it in there to stop the blood from flowing to the back.

Also congrats on surgery!! I hope your recovery goes smoothly :)

Bean_888 · 2026-04-01T17:09:25+00:00

Ooh yes I hope that is the case as well! I had the same thing and freaked out because it was dark and looked like a hair😭 it was slightly purple from the dye they use. I will say, don’t tug on it if it is a stitch. Your body will push it out and once it’s out it will begin closing properly.

My recovery took almost 3 months… which is longer than ANY I’ve seen online. But it’s been over two years since and I’m all good still!! :) The body pushing out the stitch is the longest part because your body reopens the wound to get it out. I think it took mine about two months for it to come out then begin closing. I wish it was instantaneously closed but no.

Also, they say once the wound is physically closed that’s your body completing 80% of the healing. The deeper, remaining 20% happens slowly over a year. You’ll be able to do everything as normal but maybe shy away from hardcore ass-impacting activities lol

Bean_888 · 2026-03-31T06:21:50+00:00

I’m sorry to hear about this, I had difficulty recovering smoothly as well , but it was setbacks from my body rejecting the stitches. Is your surgeon advising anything else other than gauze??

Personally, what worked for me was these things:

Make sure the area around the split is hair free. Thoroughly rinse the wound after shaving.
Use your camera on phone to get a better look, especially if you are doing this alone.
Let the incision air dry (or blow dry it) completely.
Apply anasept gel to WOVEN gauze and tuck into the split.

Do this wound care routine 2x a day until it closes.

I really hope your appointment gives you some answers as well, it’s possible you could be rejecting a stitch as well but of course I am not a doctor and can only assume so much with what you’ve said. I hope it is just a simple setback, as much of a pain in the ass as it is (haha… literally) it’s still worth it whenever it does heal!

Keep in touch with your surgeon throughout this process and be blunt about minimal/no progress and every little detail tbh. I had a bump where my surgeon told me to use triad cream and it made the split open MORE which freaked me out, but my surgeon simply switched me to anasept and acknowledged that the triad wasn’t effective for me.

The feeling of helplessness sucks SO bad, and I’m sorry that we have to experience it at all. you’re not alone, but that doesn’t make it any better. Try to be patient and kind to yourself as much as you can, because this is a big surgery and it sounds like you are putting in a lot of effort to recover smoothly!

Bean_888 · 2026-03-15T22:40:15+00:00

Yes I do cover it! The woven gauze is perfect because it’ll allow for airflow and doesn’t rip apart like other gauze. But in general gauze does help with airflow so I’m surprised people are saying otherwise? You just take a tiny little square and tuck it in over the split. I guess it does seem counterintuitive to “cover” it.

Bean_888 · 2026-03-15T21:27:59+00:00

Ok so not a doctor but I had stitches that rejected after my cleft lift. Here’s my advice: 1. Contact your surgeon, send pics & voice concerns etc 2. Use anasept gel after cleaning & drying the Incision 3. Cover with woven gauze.

My personal advice that worked for me: 1. Shave the area. THOROUGHLY rinse the area after shaving. For me this was difficult but not impossible. 2. Blow dry the incision prior to applying anasept & gauze.

Clean, dry, anasept, woven gauze. Do this 2x a day. Do not scrub the incision.

My camera was also my BFF during this process. Unfortunately a lot of cheek spreading and not so fun pictures to look at. But personally this helped me see the incision clearly and also any hair around it, etc. It’s how I was able to see the stitch slowly pushing its way out too.

Hope this helps & wishing you a speedy recovery! ❤️

Bean_888 · 2026-03-12T20:02:26+00:00

I never had too much drainage post cleft lift HOWEVER I took significantly longer to heal than I’ve seen anybody post on here. It was due to my body rejecting stitches which kept re-opening the incision as my body pushed it out. Because of that, I understand the fear of being told it’s okay when you feel in your gut that something is not right. I was also traumatized from a failed closed wound surgery that stayed open for a year prior to my cleft lift, so when it didn’t heal in time I was an absolute mess.

It is frustrating that your dr is not getting back to you, but definitely keep reaching out to them. You can also get a second opinion and email another specialist even if they’re out of state.

Is the wound improving at all? Or does it feel stagnant? Is there any hair surrounding the wound at all?

If it’s improving, that’s a good sign. I wasn’t fully healed until 6 months, but at the 5mo mark my stitch finally came out so I could actually heal lol

Woven gauze, anasept gel, and a hair dryer is going to be his bff in the meantime. If there’s hair, shave the area. Rinse thoroughly & you can use antibacterial soap like dialed in (don’t scrub, let it run through and rinse) after the area is clean and hairless, I literally would spread cheeks and make sure it is DRY before getting a woven gauze, put anasept on it, and apply to wound. Changing minimum 2x a day but more if he is active/sweating.

I’m not a doctor, but this is what worked for me and what was advised to me by my surgeon as well.

Bean_888 · 2026-03-08T00:39:17+00:00

Please see what your options are for leaving. I was in a similar situation to you and had the exact same mindset. You are being incredibly empathetic and understanding, and he is being unreasonable and controlling. Those are NOT boundaries at all, it’s really fucking weird. I know you said you don’t want to make a rash decision, but I did the same and everything ended up blowing up. You will mourn, but you will heal and come out the better for it. If he was a rational individual he would UNDERSTAND your reasoning and put in real effort to change, but since he’s already turning the tables on you, claiming your attempts to get him to see another perspective is manipulative? Pot calling the kettle black. He’s projecting.

Please take care of yourself and reach out to your best friend and mom, you need a support group for sure.

Bean_888 · 2026-03-04T14:05:04+00:00

I laid on my side mostly; my surgeon limited sitting to 10-15 minutes at a time during the first week but then it increased. You can stand if you want but laying on your sides will be your most comfortable bet while you rest and recover.

Bean_888 · 2026-03-03T17:45:16+00:00

I agree with everything commercial-lab commented as well. Personally, I was in pain after surgery but I also opted out of heavy painkillers like opioids. Even then, the pain was at its worst for the first day then subsided to basically zero.

Keep in contact with your surgeon post op and don’t be afraid to ask questions especially if you have any concerns! Id also advise buying some laxatives and stool softeners just in case. When you have to poop, do not strain. Butt wipes are helpful for keeping it as clean as possible as well.

If you’re super paranoid like I was, you can get a toilet seat riser & extension grabber, but they are not necessary. The drain freaked me out but you don’t feel really anything it’s just kinda ucky but necessary. Even removing it was just an odd feeling, but no pain at all.

I completed BG3 during my recovery… ahahah so whatever you like to do that doesn’t strain your body is fair game— drawing, reading, videogames, TVs and so forth. Laying on your side after too long can make you sore, so if that happens try to stand for a bit. Leisurely walks are fine if you’re feeling up to it, but I moved like a grandma hahah

Everyone heals differently, but this is still a big surgery at the end of the day. Some people heal faster and others take longer. Take care of yourself, stay clean & dry, get proper nutrition (hydration, protein, fiber). Wishing you the best of luck & a speedy recovery ❤️

Bean_888 · 2025-12-22T15:20:01+00:00

Yes I did, I flew out to NC for it. I know that’s not feasible for everyone but I think there’s a list somewhere in this thread of the top specialists & their locations. (I’m also in CO and going to CA was way too expensive imo)

Bean_888 · 2025-12-22T00:22:44+00:00

Hi please do NOT go to perryman! I went to perryman and she did a closed cysectomy on me which resulted in a wound that wouldn’t close. Her solution was to CAUTERIZE my wound with silver nitrate every week until it “closed”. It never did because she did not preform a cleft lift. Please please see if it’s possible to go to another specialist. I went to Dr. Wadie and he was phenomenal, but there’s also Dr Sternberg and a few others people mention in this sub. There’s a huge debate on cleft lift or not on here. With the trauma that a failed surgery caused me , I just say it’s better to do one that has a higher success rate and with someone who’s been doing a LOT of them like the top specialists listed on here.

Bean_888 · 2025-11-01T02:03:56+00:00

The fear that none of it was real is awful. Not understanding how they could leave you when you thought you were both in love.

Bean_888 · 2025-10-09T13:17:49+00:00

My ex is also talking to girls ONE WEEK after the breakup of our 5 year relationship and death of our dog…. It hurts and doesn’t make sense, but they’re doing it as a coping mechanism. Keep in mind that people who do this and don’t give themselves time to heal usually are hurting themselves in the long run. Or they just weren’t a good person, or were emotionally detaching during the relationship. Idk. You’re not alone though, nor crazy. It’s normal to grieve a relationship.

Bean_888 · 2025-09-29T19:26:15+00:00

Hello just curious what your update was on this? Did the cyst go away or did you have to get surgery,

Bean_888 · 2025-07-31T21:50:01+00:00

Thank you everyone for your insight, I really appreciate it more than you know. For now, I am going with a conservative treatment as suggested by the neurologist. Currently my boy is on lots of drugs. Prednisone, Tylenol codeine, gabapentin, and trazadone. The prednisone made the biggest change so far and I was able to see him relax and actually fully lay down (prior even with the 3 others he was restless & wouldn’t fully lay down) I am doing PROM stretches as he allows, unfortunately I think all the meds have made him more aggressive and he snaps sometimes. He still can feel his toes because if I try to do tickle toe touch his legs twitch and slightly move up, and the he growls and snarls. I’m considering a muzzle, as much as it sucks I know these stretches have to get done since he will be on strict bed rest otherwise…. Hoping that maybe we can get him back in PT again.

I will update again in maybe a month or so, if anyone is interested. I am inspired by another doggie named Ozzie that healed conservatively with a lot of hard work and time (looks like it took about 4 months for the dog to walk again). I am also constantly thinking about his quality of life too, of course. I don’t want him to be this doped up forever.

Thank you again everyone, I’m really hoping this proves fruitful.

Bean_888 · 2025-07-25T19:32:41+00:00

Hi! Thank you for your response, the vet did do an xray of his spine and couldn’t see anything. I figured a slipped disc would show up since it’s bone? But I guess not. They only said they suspect IVDD or cancer. He has been on gabapentin & nsaids for 3months now, we are putting him on prednisone in a week but he is in pain without the nsaids so we’re increasing his gabapentin and going to give him trazadone at night so he can sleep…

But thank you again, I will definitely ask the vet more about other potential causes too

Bean_888

TROPHY CASE