Promised patholgy update. Deep Low sound resonating in head? Facial palsy?

[4cm in Pacific Northwest]

May 31 I received “the newsâ€? that I had a big 4cm whopper in my head. The whopper was named Ted … and for two solid months, this summer, I read, researched and actually interviewed 9 surgeons. I also chatted (on line and over the phone) with folks from this forum. (Thank you)  I deliberated over whether to have a Retrosigmoid or a translab as one ‘new schoolâ€? surgeon planted this wild seed (in my already full head) that this might not be an acoustic neuroma and my hearing could be preserved. I was becoming an ‘old school’ vs. ‘new school’ debate topic amongst the surgeons. The decision was ultimately mine as to with who, how and when “Ted was to leave my head.â€?

I.e. I had to live with the outcome with MY decision so I better make the right one.

Days before my surgery I get a call from dear “Grandpa Brackmann� on my cell phone... He is THE older world renowned guru on acoustic Neuromas that wrote many of the medical textbooks… and truly IS a loveable man to meet in person. He actually used to work with Dr. House back in the founding days. He told me why he thought I should not have an R/S and what the chances and higher risk of outcomes could be with a large tumor.

 (I did not pick up my house phone which rang simultaneously as it was the new school OHSU surgeon- if only I had the ability to conference call these two surgeons, with such different views, so they could hash out there differences directly instead of through me.) Dr Brackmann was pretty certain this was an acoustic neuroma (unlike the OHSU surgeon) … and everything Dr Brackmann projected would happen … well it did. I don’t dare call “Grandpa Brackmannâ€? back now …as in truth I do not want to hear the words “I told you soâ€?. Age discrimination is not fair- and let me tell you all even though I did not go to House I still think that ole Grandpa Dr Derald Brackmann is one spry and sharp cookie (his neurosurgeon partner I did not meet so I have no comment there)

 I chose a younger team (who I feel are excellent and exemplary and one actually did his fellowship with Dr Brackmann many years ago). Dr Brackmann is now age 70 and his partner, Dr. Hitselberger, is now age 77. I wanted a 2 step process which means leaving tumor next to facial nerves to later attack IF there is re-growth with Gamma. I had to face reality that this House team would be age 75 and age 82 - five years down the road… and may not be available for my follow up in future years.

My younger surgeons (in their 50’s) I was very pleased with … and they had all the latest and greatest technology (being  the heart of the silicon valley etc) and Stanford University Hospital was exemplary (minus a couple ICU nurses)  :'(and I was treat very well. However “it happenedâ€? … waking up with one sided deafness (I can deal with this) and full one sided facial palsy (this is very hard for me and I am not dealing with this well). “Ted the tumorâ€? was indeed one gross sticky acoustic neuroma that took 11 + hours to remove and required a blood transfusion (I did an Autologous draw a week 2 weeks prior so it was my own blood used) … but even after removal it was not totally obvious this was an AN as it was so “bloodyâ€? and atypical… and we waited for the pathology report that indicated unusual rapid growth cells- but “benignâ€? (i.e. we need to watch for re-growth closely where residual tumor was left on the facial nerve)

The surgeons are confident the facial palsy will resolve (as the eye issues) with time and healing… being “the probe� activated all nerves just before closing – and the eye lid never malfunctioned until 2 days post surgery. I REALLY NEED TO HEAR SOME TESTIMONIES FROM AN FORUM FOLKS WHO ACTUALLY HAD FULL ONE SIDE FACIAL PALSY RESOLVE – WITH TIME (I NEED SOME OPTIMISM AND HOPE HERE FOLKS)

I am also having something really bizarre going on- and my search, on this forum, is not showing anything (unlike scalp issues etc that many of you shared and I went “phew I not the only one) … I AM GETTING THIS LOW RESONATING SOUND IN MY HEAD- AND IT IS ACTUALLY KEEPING ME AWAKE AT NIGHT. If I brush teeth with my electric tooth brush – after the brush is turned off the sound still resonates in my head (for minutes). Now I get this very LOW rumble frequency (that no one else in my household hears – so it is just me). I do have the titanium mesh (along with fat in ‘the hole’) and the craniotomy skull piece was placed back with two titanium screws … (I am wondering if this is doing it). Or is it an excess CSF issue? (I had minor stoppable CSF leaks for 3 weeks post surgery). HAS ANYONE ELSE HAD THIS LOW RUMBLE SOUND HAPPEN, IN THEIR HEAD, POST SURGERY?

I NEED TO HEAR FROM SOME EXPERIENCED POST –SURGERY AN’ERS RIGHT NOW…

Reaching out…

4

[Omaschwannoma]

Hi 4,

I did not have a low rumble, I had the trickling sound of water for almost 2 years.  I actually liked the sound so it did not stress me out, nor keep me awake at night.  Most recently, twice to be exact, I was awaken from a sound sleep hearing the sound of hammer against wood or rather a loud rapping sound.  This has not happened for a few months now and I cannot explain what that was.  I am over 2.5 years post surgery.  I have heard other people do have "head noise" that can keep them awake and make for a very stressful life.  I do hope your sound dissipates with time, as most AN symptoms will.

[MLB57]

Hi "4"--I had a 1 cm rt AN removed retrosigmoid sub-occipital Jan 2001--residual tumor was left altho both OR reports indicated "total resection to healthy nerve" (I've started 30 FSR sessions recently at MassGen in Boston,MA--they have lots of experience w/Ans) and facial nerve was left anatomically intact, HOWEVER the nerve monitoring indicated drop off in nerve functioning during surgery. So right after surgery I had little facial functioning on my right side--eye didn't blink and I had an eye patch and had low tear production so had to put clear goo in my eye , eventually only Theratears daily. But my neurotologist was confident my traumatized facial nerve would come back--it did within 1 year and my eye blinks but my smile is crooked--but not bad as most people who are new acquaintances never notice at all that much (or so they say).. Anyway I want to tell you that if the nerve monitoring functioning during your surgery indicated no harm to your facial nerve, I would think it will come all the way back.. I had back then and still do occasionally hear this sudden "crashing" sound--sometimes it's like a wave of sound swooping through my brain and crashing.. Usta happen as I was falling asleep at night.. but sometimes when I am tired I hear it come and go. Then at different times I'll have a "zapping" noise that makes me think my nerve endings are firing or short-circuiting maybe!!  Before and now more recently (since I've had 15 FSR and 15 more to go) I'm having a "ping, ping" sound --I'm sure it has to do with the radiation treatments so hopefully it will subside or change into some other sound??!!??  Of course I've have had all along a general swishing sounding tinnitus, but I've gotten used to that... 

All of the above I can live with--but whatever really unnerves or disturbs you you should see your MD about.

Best wishes and I'm sure your facial nerve will recover!    Regards, Mary from MA

[Gennysmom]

Hi again 4,

I came out of surgery with 95% of my facial nerve function, only to slowly slip to pretty much 0 by the time I'd gotten off the steroids.  When I was as far out as you are now, I wasn't seeing much change, but a little.  Somewhere about December I started getting a lot of facial twitching, to which I would notice couple weeks later small improvements.  I'd say I'm about at 70% now and still improving, and I'm at almost 15 months out.  I don't need a straw anymore, nor anything but occasional drops for my eyes...but still can't whistle for my dog.  I have a lot of tightness to that side of my face that doesn't feel normal, but the hypertonus has calmed down a lot.  It's annoying, but I can live with it.  I think if you came out of surgery with functionality, you should gain most of that back with time.

The only roaring I had was when I was leaking....haven't had that sensation since.  I'm assuming that the sound is different than tinnitus?  find something to mask it for a while and see if it goes away.  The only other thing I can think of is pulsatile tinnitus...and the low rumble may be the blood moving in your veins that somehow you're "hearing". 

Hang in there....Kathleen

[Crystal]

Hi 4 - I have varying degrees of noise but it sounds like the ocean. When I am startled I get q quick buzzzzttt sound, almost like a bee buzzes my ear and I feel the vibration also, just for less than a quarter second.  At first I loathed that feeling but I've decided not to let it bother me.

Lots of prayers comming your way.  You have alot of healing to do and have been through alot. It's time to float with your recovery journey.  It seems like everyone has something unique about theirs.  You will get through this ok.  Things will get a little better as each week passes, you will get use to the noise and learn to ignore it.

God Bless.