Post operative questions

[Derosa9817]

I am two months out from surgery. The doctors removed a. 3.2 AN on right side. I am a 42 year old mother of 3 children. before  surgery i was experiencing: Pressure headaches, ringing and fullness sensation in right ear, numbness on right side of face, loss of taste buds on right side and balance issues.  The surgery was a success as the doctors were able to remove the entire tumor. They removed the tumor that was effecting 6 out of the 12 cranial nerves. my surgeon has no concerns as i continue the healing process. i have been doing very well until recently and had a few questions.

1. I have lost hearing on right side but I have a significant amount of "white noise". Is there anything I can do to lower the noise level. Has anyone noticed that it has gone away and what is the time frame?

2. I have been experiencing a "popping" or "snapping" sensation in my head that has me scared. I am 9 weeks post op and feel that I am going backwards now. The sudden popping is very unsettling to me and making me extremely anxious. I have spoken with my doctor in regard to this and I was told that I basically have to just work through it. I have never been an anxious person before but the popping feelings have me on edge and I may be developing anxiety issues.

3. Does anyone find it difficult to be in an environment that is over
Stimulating and does that sensation go away or get better with time.

4. I currently have trouble with my right eye that is causing double vision. I have had it since surgery. Do you think OT helps?


I guess I am trying to find out from other people who have triumphed and struggled with these issues.

Thank you for your time!

[CHD63]

Hi Derosa9817 .....

So glad you had a successful surgery and complete tumor removal.  Overall it sounds like you are doing quite well.

Please remember that none of us are doctors on this forum, but here are my answers to your questions from a lay person, AN patient perspective.

1)  The "white noise" to which you refer is most likely tinnitus.  This is very annoying to many of us (I never had it until after my first AN surgery).  Mine gets worse when I am overly tired and/or stressed or when I drink too much coffee so I try to control for those things.  Some time ago I purchased a noise machine with under pillow speakers so I put my good ear down on my pillow and listen to a babbling brook as I sleep.  It seems to help me focus on the good sounds, instead of the loud banging ..... especially when trying to quiet down to go to sleep.

2)  You do not say what type of surgical approach was used to remove your AN.  My first surgery was via retrosigmoid.  I found I was holding myself very tense and soon experiencing the snapping and popping you were describing.  Not too long post-op, I began vestibular therapy (a very specialized kind of physical therapy with a trained vestibular therapist).  This helped me learn to move my head/neck in a much more normal fashion when walking especially.  I also do a gentle yoga still today that really keeps my neck much more flexible.

3)  Alas, to this day I find it very difficult to remain in an overstimulating environment very long.  Loud restaurants and/or many noisy people gathered together wear me out and I find myself going out of the area of noise (outdoors or to the restroom) to regroup ..... wedding receptions are the absolute worst for me!!  I also had my audiologist fit my good ear with a musicians' earplug, which helps tremendously when I cannot get out of this environment.

4) I also had double vision following my first surgery, but it gradually went away as I became more mobile.  I continued to have nystagmus (rapid eye movement) for several more weeks, but that eventually stopped, as well.  I am a firm believer in vestibular therapy (this is quite different than regular physical therapy).  Our vestibular system is made up of three parts; vestibular nerves, vision, and sensorineural response (how the muscles and nerves of our legs and torso feel where we are in gravity).  When the signals from one of the vestibular nerves is disrupted by the AN, our other two parts have to work overtime until the remaining good vestibular nerve learns to take over.  It's a brain thing and the timing/severity of this is unique to each of us.

So, yes, many of us have struggled (or still struggle with parts of this) and learned to compensate very well and go on with life ..... sometimes needing permanent modifications in what we do (e.g. sitting in a room with best hearing advantage, etc.).

Best thoughts.

Clarice

[Derosa9817]

Good morning Clarice! Thank you for taking the time to respond to my questions. I definitely feel more at ease with what I am currently experiencing. Your words and thoughts are helpful to me and I wanted you to know that I appreciate it.

I agree that vestibular therapy is extremely helpful. I too was having difficulty with my neck and normal head movements. I have been going on a regular basis and would also recommend to others.

Did the popping sensation go away for you as it is this post surgical sensation that is causing me the most difficulty emotionally speaking right now? I too had a retrosigmoid surgical approach used to remove tumor.

I will also be looking into my options for hearing devices and agree that the tinnitus is exaggerated when I am tired or in a loud environment. Your suggestionsare helpful.

Happy Monday!

[CHD63]

Hi again .....

The popping sensation eventually went away for me ..... but still returns if I find I have been holding my head/neck stiffly too long and then turn my head quickly.

I assume you have mentioned this popping to your vestibular therapist ..... if not, be sure to and follow the suggestions made.  If the exercises do not help or if you have actual pain when you hear the popping noises, be sure to recheck with your doctor (your PCP should be able to help with this).  If  you are assured they cannot find a reason for the popping, maybe a massage by a licensed and experienced massage therapist would help.  Remember I am not a doctor, but that is what I would consider doing.

Hope you have some relief soon.

Clarice

[Crazycat]

Yes, I had double vision before surgery. After surgery it was the most extreme. I had to wear an eye patch for about a year. It has eased up considerably since then but I still have it. I have good days and bad days.

[lkrk]

I am 5-1/2 weeks post translab approach. I too am experiencing double vision, white noise, loud sharp noises, vertigo and very sore neck. I was told to give healing more time, to be patient! I tend to want things NOW! I am very thankful that I do not have facial issues.

Lauren
15 mm AN
Diagnosed 6/2011, 7 mm
Translab approach 3/13/13
Mayo Clinic
Dr Driscoll, Dr Link

[Syl]

1. I have lost hearing on right side but I have a significant amount of "white noise". Is there anything I can do to lower the noise level. Has anyone noticed that it has gone away and what is the time frame?

3. Does anyone find it difficult to be in an environment that is over
Stimulating and does that sensation go away or get better with time.

Derosa9817,
With time my brain has adapted a bit to the many changes caused by the AN. I doubt that my tinnitus has diminished, I have just adapted & learned to deal with it. What helps me with the tinnitus is my hearing aid. When I am wearing it, the tinnitus gets masked a bit. When I'm not wearing my hearing aid, the noise is more noticeable.

As for the over stimulating environment...any place with lots of people (the mall, flea markets, birthday parties, etc.) tends to tire me out alot. It's not just the noise. But just the fact that I need to move my head to look around tires me out alot & my wonkiheadedness gets worse. I find that when I'm in this type of environment, I need to sit for a bit & get some rest to continue on with my day. It helps that my husband holds my hand, especially when I start to walk like a drunk. This is another issue that I have learned to deal with, but the wonkiheadedness has diminished over time, unlike the tinnitus.

Syl

[Imcamodchick88]

Derosa,

I am 2 years post-op, and I do still have the tinnitus. I think I have learned to ignore it, as my doctor said I would. Since I was experiencing this before my surgery, I was already learning to tune it out. I have noticed that it is worse when I am really stressed, or of course if it is really quiet where I am. Or if I am hyped up on caffeine, since I rarely drink caffeine.

As for double vision, I cant help you there. I wear contacts, and my glasses make me dizzy. Therefore, immediately after surgery I walked around mostly blind, with my mom leading me. Once I was cleared to put my contacts back in, I know my vision was back to normal, except for when I have migraines.

I never had the popping sound, although I swear I still get the sharp ringing in my AN ear every once in a while. Although, I work in a lab where there is constant noise so I may just be losing it in there. I do agree that yoga helps though, since I know I tend to hold my neck stiff more often now.

I still find being in loud situations overstimulating. However, mine is more that I can't pinpoint where noises are coming from, and that all the noise just slams into me. I don't wear a hearing aid, so instead I control what I hear and how long as much as possible. In lab, I very often have a headset in so I get to chose the noise I have in my head. However, I have gotten better at it in the past 2 years. I no longer feel like I cant handle it, and having someone there with me helps. This past summer I took my niece to a children's museum that was incredibly crowded. She is 4, but knows I cant hear out of one ear, so she has to stay on one side and in line of sight, because if she shouts, and I cant see her, I wont be able to find her. We stayed there all day, and I was able to stay in the crowd without a panic attack, or having to disrupt her fun to go outside. So it does get better.

Best Wishes!
Kristin

[ncbj]

Hi,

I am almost 9 months post-op. Still have the popping sound. Somewhere if have read that this normal for scull surgeries and it is because of the scull bone growing together again. When I hold my hand against the surgery side the popping disappears - it gives me comfort that it is related to the healing process.

Best wishes,
Niels