Three weeks post-translabyrinthine. Couple of questions.

[LastAshenHero]

Hi all!  I'm new to the forums.  I had my translabyrinthine approach surgery on August 8th, three weeks ago, by Dr. Farrokhi at Virginia Mason in Seattle.

I'm 36 years old, and had a rough first week of recovery, though I'm doing better now.  No facial weakness, no nausea, just dizziness and "head-wobbliness," which seem to be improving each day.

I've noticed a couple of things that have made me curious about other people's experiences.

1.  As of a few days ago, I appear to be able to "clear" my operated-on ear, despite the fat graft.  It clearly makes the click some of the time when I swallow.  I've read online that between 40-70% of translab patients experience a "reopening" of the eustachian tube, but this has me concerned.  Before surgery, I had a hard time with landings on airplanes.  I couldn't "keep up" with the pressure changes by clearing my ears, and would inevitably get crippling eye and jaw pain from the cabin pressure changes, sometimes it would last for days.  Now I'm worried that because air can apparently get up into my surgical site that flying won't be safe.  I plan to talk more in depth about this with my surgeons at my six-week followup, and I know it's still very early, but has anyone else experienced this?  Has anyone been able to clear their ear, and fly?  Eager to hear about similar experiences.

2.  It's probably an illusion, but I feel like I'm "hearing" the inside of my head with my dead ear.  When I talk, it feels like there's a dull version of my voice echoing in that ear, when I move my eyes around, I can "hear" them moving in that ear.  When I clear my ear, as per item 1, I can "hear" the clicks in that ear.  This is just an illusion, right?  Maybe caused by the bone vibration?  I shouldn't be able to "hear" anything on that side?

[milhaus]

Its a bit sad that this forum isn't more active. It was a lot of help to me back in the beginning. I haven't been on in a while, I am about 4 years post op from my first of two trans-labs. I was 23. My experience was very rough, many complications.

I too have had some strange pressure issues, but I have been able to fly just fine. Sometimes for no apparent reason I get an absolutely horrendous pain in my ear on the surgery side that lasts maybe 30 seconds to a minute. I have no idea why, but I always thought it might have something to do with eustachian tube pressure.

I can't say I have ever had the illusion of feeling like I am hearing the inside of my head with the dead ear, but I can relate to the eye movement thing. I have tinnitus which has not lessened in 4 years, and moving my eyes in different directions actually changes the pitch of the tinnitus. Really weird, but very real. I am not the only one who has reported this either. In fact, I didn't even notice it until someone else told me that's how theirs was. For that reason, I could totally believe what you are describing.

One thing I have learned from all this, everyone is really different. There are so many Acoustic Neuroma stories, so many people with so many experiences. They are all different. We all look to others who have been there before for support, but what I have found over and over is that no one else knows what I have gone through. The brain is a really complicated and strange machine, and when you start messing around with it, unpredictable things happen. That doesn't mean we can support each other or relate to one another, it just means that if you feel like something has happened to you that you can't understand, no one else has experienced, and current medical science can't explain don't despair. It's real. You just have to accept the fact that you will probably never will actually know.

[LakeErie]

Milhause, your post reminds me of a memoir I read years ago by a neurosurgeon titled "When the Air Hits Your Brain."
The title came from an aphorism he heard in residency, You are never the same when the air hits your brain. The meaning is that there is a reason the brain is encased in such thick bone, it is not supposed to be exposed. It is something of a crap shoot how any one of us turns out post op given how the brain may react to different circumstances of the tumor and the surgery.
I agree with your assessment of the current status of the board, it used to be different. No idea what accounts for it, maybe it will come back.
LastAshen, you are very early in the recovery process and much of what you experience currently may disappear with time or you may just acclimate to what doesn't change. Try not to judge your longer term future by your near term experience in recovery. Recovery is often very gradual, mine was 16 to 18 months depending on the particular complication, and I had many. Good luck

[tsaff88]

LastAhen, after my translab I have heard very realistic sounds in my deaf ear from time to time, realistic enough that I've looked around.  My ENT said not to worry, it's all in my head    I guess the brain really does have a mind of its own.

[CHD63]

Not to pull this thread off topic, I just wanted to address the concerns expressed by milhaus and LakeErie regarding the activity change on this Discussion Forum.  This forum began before the social media explosion and thus served a unique purpose of support and information at the time.  In today's world, Facebook has become very active as an area of support.  I think there is a need for both avenues of support since there are still many AN patients and/or caregivers who are not on social media.

This forum is still the lifeline for many people who never post, but check other the posts of other people and the information readily available using the search function.

Thanks to all of you who post on a regular basis!

Clarice

[keithmac]

Not to pull this thread off topic, I just wanted to address the concerns expressed by milhaus and LakeErie regarding the activity change on this Discussion Forum.  This forum began before the social media explosion and thus served a unique purpose of support and information at the time.  In today's world, Facebook has become very active as an area of support.  I think there is a need for both avenues of support since there are still many AN patients and/or caregivers who are not on social media.

This forum is still the lifeline for many people who never post, but check other the posts of other people and the information readily available using the search function.

Thanks to all of you who post on a regular basis!

Clarice

Apologies in advance if I'm also taking this thread off-topic but here in the UK I'm seeing an even lower level of member participation on our BANA website discussion forums.  The Facebook group appears to attract those who might otherwise use our forums to contact other members.

 I have encouraged our members seeking information also to join ANA because there's a huge database here of member experiences and a much more active website in general.

[robertweeks]

Hi LastAshen.  I am a little over two years post translab.  I agree with the earlier post that every person's experience is likely to be unique and variable.  I had a friend who went through AN surgery and two weeks later felt like his life was back to normal.  Mine has been more problematic, but life is still good and I count myself very fortunate. 

I was concerned about flying, post-surgery, and my surgeons, who had ordered me not to cough or sneeze for a month and, when I laughed at that, told me they were dead serious about it, had also told me that flying was not an issue and not to worry about it. 

I also have periodically experienced sharp stabbing pains at the point of incision.  These are short and not frequent.  It has been some months now since I have experienced that so I don't worry about it much. 

And I also experience the illusion of hearing in the affected ear and I am sure that is all that it is.  I asked the doctors about it and all have said it is not possible because the auditory nerve is gone.  And there is certainly no hint of actually hearing anything outside of my head in that ear.  It is only the echoey inside the head stuff that sounds like I am hearing it.  But I'm sure I'm not. 

Hope that helps.  Good luck on your recovery.  Keep at it. 

[kgs123]

Not to appear ignorant, but how does one prevent a cough or sneeze?!

[Kathleen_Mc]

kgs123
I believe one has to have a medical degree to stop a sneeze or cough !
I would think pinching your nose to prevent a sneeze would not be a good idea, tends in greatly increased the pressure in the ear however I am not a doctor so possibly I am wrong

[ColleenS]

Hello, everyone! This site was so very important to me when I needed to learn all I could about... everything. Before, during and after diagnosis and surgery. There are times that I read but do not respond when 1) it didn't happen to me 2) different treatment options or 3) my answers/comments have been covered by others already. So take heart - people are still here and still care.

I had the "don't sneeze and cough" talk too. They said it minimizes the pressure if you keep your mouth open during either. 

I have not had the clicking in my ear but have had sharp pains occasionally that do not last long and have become less frequent the further away from my surgery date.

I have also heard or pseudo heard some weird noises. Mine are like static, tinnitus, clanging and banging noises that come and go. I know it is an illusion kinda since my hearing is gone on that side. I can push my good ear in a pillow and hear NOTHING except for the above... so it seems to be bouncing off the bone or something. I, for the most part, ignore it. I did the same thing with hot flashes years ago. They are easier to deal with if you do not pay it much attention. Both come and go in intensity.

So, all in all, you are doing fabulous this close out of surgery. Each week and month get better. My lasting thing now is fatigue. But even that is getting better. But heck I am working two jobs and try to walk daily. So I can not complain. Good luck to ya!