r/Schwannoma

▲ 11 r/Schwannoma+1 crossposts

Edit : pathology finally came back as a schwannoma with little chance of re occurrence. So this is generally advice for a non-cancerous facial tumor removal!

waddup yall. i am officially 2-weeks post surgery on my superficial paroidectomy. this is an attempt to fill the gaps in information I had before the surgery. (pics/vid added soon. All pictures please assume to be NSFW. Days 0-7 are covered with a bandage. Day 3 you are able to see a couple inches of the wound. Dried blood visible throughout. Nothing too crazy nsfw.)

Day O/Preamble - I originally noticed this tumor 5 years ago around covid. Derm told me to get it scanned, and after 4 ultrasounds, a CT, and 3 biopsies (2 ultrasound-guided) the consensus was a whopping "i unno glhf". Once i saw my new ENT in Minneapolis he gave me a good explanation that boiled down to "if you were 60 i would tell you to live with it. its likely benign and "sitting quite nicely on you parotid gland"". I'm 24 so it's a good idea to get it removed now since i saw .1-.2cm per year growth in diameter. Only the last 6 months did I start truely having issues - minimum nerve and jaw pain, likely since the tumor was just big enough for being so close to my mouth. I have been biting my cheek for years now and its SO nice to not be anymore.

Day 1 - Surgery went amazingly. Thanks to dr Patel @ HCMC. No port and discharged within an hour! My scar will be a bit bigger than normal since my tumor was so far forward on my face. But the general day one feel was chilling on oxy while trying to get my (famously bad back sleeping) ass to sleep. A neck pillow + POANG ikea chair made do until

Day 3 - where i started moving to a wedge pillow plus sleeping on the opposite side of my incision. But oh boy, the swelling and bruising ramped up. I've barely been able to move my head more than a few degrees each direction. A bit of ice helps but I tried to still practice moving my head every day progressively more. have you ever got a bit cut/scrape and it takes a week or two to heal and scab over? thats the only pain I can relate this to. I've had a septoplasty and ear tubes which doesnt come close to this. It feels like each end of the incision is tugging back and forth. This eventually got better by week two but it's such an uncomfortable recovery while not being painful. im not sure how to explain it if you haven't had stitches before. I was feeling so good though I was itching for it to heal so I could get moving again. Everything that gets bad on day 3 is like a bell curve - it slowly gets worse for a day or two, peaks, then slowly gets better. but it still sucks.

Day 5 - Swelling and bruising has already peaked. Oxy is over, so driving again (but turning to check your mirrors suck) so i only drive when I have to. Acetamenophin is a big help. Home stretch time. I'm only now really able to know how much is numb. Earlobe feels fine, tinnitus out that ear is worse. Lack of sensation from the incision up about 4-5 cm towards the tumor. however, i've noticed my face is hella defined and tight looking. my best guess is this is one of two things. 1) my doc gave a free facelift, or 2) there is a lack of fat in the area since there was a big ass TUMOR there, so my face is automatically more "defined". I'm 240lbs and have the left half jaw line of a right wing incel facemaxxxer lmao.

Day 7 - Doctor clears me for all activities after removing the bandages. Work my way up, but I'm good to go back to working as a mail courier. One more week of light treatement before it finally starts scarring

day 10 - still feeling better slowly. started lifting stuff up to 45lbs or so just fine. still trying not to "strain" when i do any lifting, preventing sun exposure, and other general advice. Going on a fast elevator from floor 0 to 20 was a bit painful for my ear but i dont regularly go up 20 floors in 45 seconds anyways LOL

Day 14- Very pleased with recovery. Some areas look perfect and healed, others have what is either scabbing (too scared to be abrasive) or dried blood. been two weeks so i plan to clean it a bit more. Been a couple days of trying to just run my hand across my face as much as possible. I feel maybe a bit more sensation coming back. The first few days of doing that it got sore and hurt, so be careful at first, but you should try to get it used to stimulation asap. I feel like I waited to long, i didnt even touch it with a washcloth for days after bandage removal.

Day 17 Finally starting to lose the stitches. Still fine healing. Will slow with updates but I feel like I can feel a slight bit more sensation every day. My facial hair is three weeks long now so I can't see it great but still healing fine. Tinnitus is mostly gone and my hearing is 75% back to normal, just a bit more pressure in that ear than normal. Still some tightness when I turn my head opposite the side of my incision but honestly by this point I'm just being a baby when it comes to exercise n stuff. Athletes id give ya another week to start high intensity stuff but my fellow slightly overweight sedentary homies should be fine at this point to resume 99% of activities unless ur doctor says otherwise.

Let me know any other questions but hopefully that timeline can help with giving you an idea of what you're up against. Dont take it lightly, but its not the end of the world!

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u/living_tumor — 12 days ago

Hi everyone, I’ve (35f) recently been diagnosed with a suspected vagal/hypoglossal schwannoma, approximately 4cm in size.
I have consulted with a few specialists and have been guided towards Stereotactic Radiosurgery as a less risky option considering the location of the schwannoma.
I was wondering if anyone has similar experiences they can share or undergone SRS for schwannoma treatment?
Thanks!

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u/No_Biscotti_2480 — 9 days ago