Author Topic: Newly diagnosed 12/2/19- surgery 2/12/20 Lots of questions!  (Read 768 times)


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Newly diagnosed 12/2/19- surgery 2/12/20 Lots of questions!
« on: January 20, 2020, 10:15:19 am »
I was recently diagnosed 12/9/2019 with aleft side acoustic neuroma. I also have an adjacent arachnoid cyst. Both are in the 2cm-2.5cm range.

Less than a year ago, I had surgery and chemotherapy for Stage IV uterine cancer. I thought the chemo had damaged my hearing as it affected the nerve endings in my toes and fingertips, so I asked to have it checked after I was in remission. The cancer is still clear and I have frequent check ups on that. If the AN was malignant, it would be called a second cancer because that is not where this type of cancer comes back. I'm 57yo. so I've got a lot of living to do yet.

Surgery is the clear choice because cerebellum is already being pushed aside, they can drain the cyst, and most importantly biopsy the tumor.

Tomorrow is my appointment with the neurosurgeon and I have a list of questions for him. I'll come back here to get your personal experience feedback. At this point, the surgery part isn't scaring me too much. Either I survive that or I don't. It's the risks and after effects that are keeping me up at night.

The big three- hearing, facial muscles, and balance are all very important to my lifestyle. I work as a school librarian, I play a brass instrument, and enthusiastically bicycle year round. How much of this will I be able to return to when I go back to work 4-6 weeks after surgery? I just want to be prepared if I need extended therapy to be able to function, or to get some kind of odds that I'll lose the ability to buzz the mouthpiece to play my instrument.

Thank you for any reassurance you can provide, especially about your recovery from surgery.
« Last Edit: January 21, 2020, 06:35:07 pm by SharonJoy »


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Re: Newly diagnosed 12/2/19- surgery 2/12/20 Lots of questions!
« Reply #1 on: January 29, 2020, 01:17:13 pm »
Welcome to the club and sorry you are here! Especially after going through cancer last year. That is not cool at all. Honestly, the brain is a miraculous thing - the opposite side compensates after surgery within a month or so. Balance issues are almost nonexistent for me unless it is dark or I have had a couple of drinks. I did not need any therapy after the eight week period. I did therapy for balance and strengthening but quickly recovered. I did lose complete hearing in one ear and lost my balance nerve on the AN side as well. Hearing is fine unless I am in a crowd or in a loud situation. Facial issues - now that is still ongoing for me. I did not have any paralysis after my surgery, but my eye did not tear or close so it was painful. I have now had almost 3 years of dealing with that and it is better. I tape and patch my eye every night and use lubricating gel drops during the day. My eye actual waters while I eat now - annoying and dry all the other time. Sigh. I only cry out of one eye too. I had a sliver left on my nerve to preserve the nerve and the bugger grew back. So last year I had radiation on the AN. I had side effects from that and facial paralysis in month five after the radiation. This treatment makes the tumor swell and that aggravated my facial nerve. After about 6 months my face is much better, but not completely gone either. So having to drink from a straw, numbness on face etc.. the Bottom line is we all are different and over time you learn to cope with what you are dealt with. I think you probably already know that though. I am sorry you have this to deal with after surviving state 4. Keep reading the forum - I learned so much when I first came.
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness

Greece Lover

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Re: Newly diagnosed 12/2/19- surgery 2/12/20 Lots of questions!
« Reply #2 on: January 30, 2020, 10:22:47 am »
Sorry you had to join the club. Like Colleen, I too sometimes tear up while eating.  Annoying but not a big deal.
As for likely results of the surgery, it's really only your surgeon who can give you the basic percentages that you're facing.  And, my understanding is that a lot of it depends on what the tumor is like and exactly where it's growing once the surgeons are in there.  Trauma to the facial nerve can happen, but often the nerve can heal and facial function returns.  Although not always. 
I ride my bike a ton and I have very few problems now.  I have to be a little careful if I turn my head quickly to look behind me, but overall its great. I had some sessions of vestibular therapy after surgery, which I appreciated. My doctor didn't think they were necessary, but I found it helpful and encouraging to work with a vestibular specialist.

As for when you can return to work, this is really hard to predict and everyone is different.  I have summers off so it wasn't an issue for me, but I would not have been able to do it at 4 weeks. I wouldn't plan on that for sure.  6 weeks might be more likely, but everyone's body is different and heals differently, so don't lock yourself into one idea. You need to let your body do what it needs to do.

the first few weeks after surgery are not fun, but it was amazing to me how quickly I bounced back.  Sounds like you are active and positive and those things can make a big difference.  Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!


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Re: Newly diagnosed 12/2/19- surgery 2/12/20 Lots of questions!
« Reply #3 on: March 07, 2020, 09:59:40 pm »
thank you. I found the Acoustic Neuroma Facebook group, and have been quite active in there since diagnosis.

Retrosigmoid/suboccipital surgery 2/12/20 for 2.1 cm left AN. Loyola (Chicago area) with Dr. Prabhu and Dr. Marzo. I was glad to be referred here because Dr. Prabhu works closely with my gyn. oncologist and Loyola is convenient and familiar.

Everything is healing fine, and I've had no complications besides the common effects of the surgery.

SSD, though my hearing nerves are intact. Some balance issues with my vestibular nerve removed with the tumor, but I'm getting around with a hiking stick in case I lose my balance. Facial paralysis is at VI on the the scale, with no movement at all. That's been the hardest thing to deal with since surgery almost 4 weeks ago. I have some speech difficulties, and need to drink using a straw. My left eye does not close or blink causing eye strain and vision problems.

I had an evaluation with a physical therapist who specializes in facial palsy, confirming VI rating, and have appointments coming up for vestibular and speech therapy.

Doctors assure me that my face will improve over time, but I understand going from a VI to a I is not going be a realistic goal. At this point, I'd be happy if I could get my left 'blinker' to work since my eyes are causing so much discomfort and making it impossible to read or drive. I'm not going to be able to play my tuba anytime soon, if ever.

I wonder if anyone who has retrosigmoid approach hoping retain serviceable hearing, actually regains some if hearing is absent after surgery.  Is the hearing nerve like the facial nerve, just in so much trauma that it isn't working now?