Middle fossa post op questions

[Marcirecovery]

Hello all!

I had a middle fossa cranial surgery on Sept 3, 2024 to remove a very small VS that was causing dizzy and balance issues. The surgery was more complex than anticipated because the tumor was more entwined in the nerves than expected. I was informed my facial and cochlear nerve were both intact at the end of surgery. Two days after the surgery I developed a cerebral spinal fluid leak and spent an extra seven days in the hospital on my back with a drain.

Since the surgery I have come a long way with balance, facial issues and eye issues but still have a lot of pressure on the right side of my head where the tumor was.  I also have these weird sensations that radiate inside my head and down my right side of my face as well as eyesight issues when looking at a computer.  My ear feels full like I have water in it and I’m sensitive to sound.

My docs and PT say I’m doing great and will recover but it’s hard to believe at this point.  All google says is I should have been better by now and back to work. It’s discouraging.

Has anyone else had these issues hang on and is this normal? I’m terrified I will never get better at this point.

Thank you to anyone who is able to respond with input.
Marci

[BertH]

Hi Marcy! This is frustrating, I know.  I had retrosigmoid in early 2009 and it frustrated me when I was still struggling three or four months down the road. First, STAY OFF GOOGLE! There's so much misinformation on there. This is the best place for feedback from other post treatment patients.
Please remember you're still early days in the process. This is brain surgery, not an appendectomy. Some of us take longer to get back to a normal that's different than it was before. Honest to god, it gets better.

[donjehle]

Hi Marcirecovery!

As BertH stated, please do not rely on Google for a timeline on when you should be better.  Even posts on this forum can vary on recovery time.

There are many, many factors which can cause your recovery time to vary.  One factor can be where you had your surgery.  Some hospitals and doctors do not have much experience in treating acoustic neuromas, and sad to say, their success at treatment and the recovery time can vary greatly from specialists and facilities which take care of many patients with ANs.  Another factor can be where the tumor is located.  From your description, it sounds like yours was more complicated than many others.  Hence, you might not be able to go by a 'standard' recovery time.  It only makes sense that a difficult procedure could have a longer recovery time.   Other factors can include the patient's overall health and age.  Younger people tend to heal faster as do those who are in good health (compared to those who have a number of other health issues).

I am not a physician and no longer work in a hospital setting, but I just want to assure you that while there are often general recovery times which are true for some patients, those general times are not true for everyone.  Some of us just take longer to recover, and that is okay.  Please do not worry about how long it is taking you.  Your recovery journey is unique to you!

Best wishes on your continued recovery!
Don

[Marcirecovery]

Thank you both for your responses.  Thankfully I was lucky to have a top rated dr and team perform my surgery at the University of Iowa Hospitals. My dr was hand picked out of San Diego and the team was in contact with Mayo Clinic regarding my case. 

I know I need to trust in faith, and my drs more and stop searching google. I just get so scared sometimes as I don’t think I prepared myself enough for the healing process. 

I very much appreciate the responses and support. Thank you.

[skier]

Hi,

I can relate to your situation, too. I am 13 months post-translab surgery.

I'm happy with the results, but I am still making progress with subtle issues like:
1- dry eye (occasionally, which is better with natural moisturizer drops), or sometimes extra tears in that eye
2- funky feeling in the area of the skull where the surgery, which comes and goes. (Few days/month, it might be bothersome) Sometimes an ice pack helps.
3- rarely, mental fatigue, which I attribute to the tinnitus and single-sided hearing. (1-2 days/month?)
4- grief. I am doing great, but I do mourn the lost hearing and the tinnitus burden

I try to remember the Big Wins from surgery. I have my overall health back; my facial nerve works well; my balance is super-amazing/nearly 100%; and the tumor is gone. I have very deep gratitude for these results.

Some days I forget the whole thing has happened.
Other days, I struggle, especially when the tinnitus blares and I'm mentally exhausted.

I find walking outdoors is a mood lifter. Even a short one.

Take care, and I'm glad you wrote to the chatboard. Hope your healing continues well.
Skier