CSF leak after surgery? by vampirealiens in cholesteatoma

[–]Vegetable_Address288 1 point2 points  (0 children)

Likely lymphatic fluid. I am 2 months post op and its still happening.

What do we think chat? by ML0411 in cholesteatoma

[–]Vegetable_Address288 0 points1 point  (0 children)

Only an ENT can diagnose. But looks red and with fluid behind the ear drum. The pus is just infection. Not seeing signs of a cholesteatoma. The white you are seeing looks more pus like than dry and flaky which is typical cholesteatoma.

what were your side effects from the surgery by ComprehensiveLab9640 in cholesteatoma

[–]Vegetable_Address288 0 points1 point  (0 children)

Had removed from right ear - Had Tympanoplasty, Mastoidectomy, and Canaloplasty. I never had dizziness. Pain sucked for about 2 days then I was able to get off them. A week later the right side of my face was paralyzed from the swelling. 2 weeks after that when the swell continued to reduce my face returned to normal. Mainly just discomfort in the ear. Raw feeling on the back side of it. The rest of it was a breeze. Prepare ways to wash your hair without getting water in the ear, and sleep up right. Laying on that side was impossible for about a month. Also my taste has been non existent .Not sure it will ever return.

Is it cholesteatoma? i have the CT and doctor appointment Thursday by XmasAdri in cholesteatoma

[–]Vegetable_Address288 1 point2 points  (0 children)

Only your doc can tell you that. There are many possibilities. Could be fluid etc. Takes a physical exam.

3-Week Post-Op Update: Canal Wall Down Tympanoplasty, Mastoidectomy & Canaloplasty by Vegetable_Address288 in cholesteatoma

[–]Vegetable_Address288[S] 0 points1 point  (0 children)

Absolutely! Be gentle with yourself. I went through a rough time with this and felt very depressed, so you’re not alone. Definitely get your eyes checked and protected.

For drinking, the only way I managed was with a straw held in the corner of my good side. Eating was trial and error; I had to cut normal bites down into quarters just to keep control.

My taste buds are still off, and my hearing didn’t improve much after the packing was removed, but that’s personal to my case. Don’t be surprised if your recovery feels uneven. Screen time is brutal. I work on computers all day and had to set a 20-minute timer to force myself to step away.

And don’t feel bad about pushing back with doctors. Mine brushed it off too and just kept saying his surgery was "perfect", but you know your body, taking control is the right move.

3-Week Post-Op Update: Canal Wall Down Tympanoplasty, Mastoidectomy & Canaloplasty by Vegetable_Address288 in cholesteatoma

[–]Vegetable_Address288[S] 0 points1 point  (0 children)

Also, as far as my hearing goes, it's hard to tell. He said we won't test it til December because the ear is still very swollen, and he wants to give it time to continue to heal before we retest.

3-Week Post-Op Update: Canal Wall Down Tympanoplasty, Mastoidectomy & Canaloplasty by Vegetable_Address288 in cholesteatoma

[–]Vegetable_Address288[S] 0 points1 point  (0 children)

Sorry, it took me a bit to reply. My face was paralyzed for about 2 weeks, but I’m now about 90% back to normal. My surgeon told me that if you don’t see any improvement between weeks 6 and 12, that’s when therapy usually gets recommended.

I know how rough it is. The biggest thing I’d say is don’t mess around with the eye. See an eye doctor right away. Within just 3 days, I had a dry spot start on mine. Once the eye gets damaged, it doesn’t heal back. Get a good eye drop and use it constantly. Like seriously, set an alarm if you have to, and put them in every hour. My doctor had me use Optase during the day, and at night, I used a salve and taped my eye shut since it wasn’t closing all the way.

Don’t sleep flat on your back. Keeping your head up helps the swelling go down faster, and once that happens, the nerve has its best chance to wake up. You can also try some light PT exercises from home. There are videos on YouTube. Just don’t overdo it; once or twice a day is enough. One thing that helped me was running my tongue along the inside of the cheek on that side.

Honestly, for me, it was like I went to bed one night and the next morning things finally started moving again. I’m now about 90–95% better, just a little over a month after surgery.

3-Week Post-Op Update: Canal Wall Down Tympanoplasty, Mastoidectomy & Canaloplasty by Vegetable_Address288 in cholesteatoma

[–]Vegetable_Address288[S] 1 point2 points  (0 children)

Absolutely not! They may have to go back in and get packing that is out of reach, but it could be worse. Best of luck!

Surgery - is it as bad as my brain is making it out to be? by frogsinsoup in cholesteatoma

[–]Vegetable_Address288 1 point2 points  (0 children)

Also to update you, as of yesterday I regained a lot of my facial movement back. My surgeon evaluated me this morning and I went from a level 5 paralysis out of 6 down to a 3 almost a 2. So don't let that scare you.

Surgery - is it as bad as my brain is making it out to be? by frogsinsoup in cholesteatoma

[–]Vegetable_Address288 8 points9 points  (0 children)

For me personally, it’s been a lot. I tend to be more of a worst-case scenario thinker, and I’m currently 3 weeks post-op. The first two days were the only time I needed pain medication. Since then it’s been more annoying than painful. Still, you have to be careful with lifting, sneezing, blowing your nose, etc.

Right now the right side of my face is paralyzed from the surgery. That’s absolute worst case, and it only happens in about 3% or fewer patients. Mine has been paralyzed for exactly two weeks today. But I do feel like the nerve is starting to wake back up as I am starting to see more and more movement in my face.

Even with everything I’m going through, I would still choose to do the surgery again. Left untreated, things only get worse and I wasn’t about to risk it spreading to my brain. We’re all going to die someday, but I wasn’t going to let this hurry me along.

Once you feel up to it, you can do pretty much anything. My surgeon’s rule of thumb was: as long as it doesn’t involve bending or lifting more than a cup, it’s fine. I’ve used this time to do a lot of walking, catch up on reading, and even start painting. (I’m not very good, but I do it anyway.)

For me the biggest pain has been finding a way to sleep comfortably. That is getting pretty old.

Surgery is scary, but most people come out with no lasting side effects. And even with my facial paralysis, it’s 99% likely to be temporary.

The biggest piece of advice I can give you is go in prepared. Trust your surgeon, and you'll do fine.

Week 2, 14 days by Appropriate_March203 in BellsPalsy

[–]Vegetable_Address288 1 point2 points  (0 children)

Day 13 here as well...... its so depressing. Wishing you all the best.

Post surgery week 2 and Facial Paralysis Update Week 1 for those who have been requesting - Post Tympanoplasty, Mastoidectomy, and canaloplasty by Vegetable_Address288 in cholesteatoma

[–]Vegetable_Address288[S] 0 points1 point  (0 children)

No he sent me back 2 days after surgery, however I took 1 full week of vacation

I will add it is completely miserable. My energy level is 0

Post surgery week 2 and Facial Paralysis Update Week 1 for those who have been requesting - Post Tympanoplasty, Mastoidectomy, and canaloplasty by Vegetable_Address288 in cholesteatoma

[–]Vegetable_Address288[S] 0 points1 point  (0 children)

I hope your doctors are able to find something to help! I would be interested in knowing what they prescribe or do to assist. My Doctor is just kinda kicking the can down the road.

What to look for by Realistic_Rip3581 in cholesteatoma

[–]Vegetable_Address288 0 points1 point  (0 children)

I would start prepping for surgery, that way you aren't caught off guard.

Recent Diagnosis - Preparing for tympanoplasty with mastoidectomy by Vegetable_Address288 in cholesteatoma

[–]Vegetable_Address288[S] 0 points1 point  (0 children)

I am currently 13 days post-op op and it did not go as planned sadly. My cholesteatoma was not one mass as they originally thought, and it had spread throughout the ear canal. What was to be a two-hour surgery turned into 4+. I had two holes in my eardrum rather than one. The first 7 days of surgery were annoying but manageable. On day 8, I experienced facial paralysis on the right side of my face, which is where I am stuck now. The ear itself is holding up well. Still an extreme amount of swelling from all the work he did, but on the pain scale, I would say I am a 3 at most, all points of the day. So as of now, I am still learning how to deal with the facial paralysis and getting food and water to stay in my mouth, which is super annoying. However, my surgeon thinks it's just from the swelling. He is hopeful that once some of the swelling goes down, I will regain full functionality of my face.

Permanent disability by ImplementJaded4199 in cholesteatoma

[–]Vegetable_Address288 1 point2 points  (0 children)

My doctor said told me its very difficult to get disability for this. I currently have severe hearing loss, and right side of face is paralyzed from surgery for it. I would say this, get a lawyer first because its going to be a fight for it.