W&W symptons

[cont1592]

I have gotten two more consultations from two top physicians in our field.  One of them has pointed out that yes, a growing AN warrants greater consideration for removal or radiation, but he also feels strongly that worsening symptoms (reduced hearing, increased ringing, etc..) also warrant greater consideration.  After talking with him, I immediately scheduled another hearing test.  My current physician feels strongly about observation with removal or radiation as a last resort since I am 52, my AN is 1.4 cm and is close to my AIC.

Any thoughts?  Thank you.  Rick

Also, I am resigning to the likelihood that my 65% hearing will sooner or later be total hearing loss.  With that said, what happens with the ringing?  Does it persist even after total hearing loss.  Sometimes I feel tinnitus is worse than deafness.  Sorry to sound so negative.

[Ruthie Mac]

It was a relief for me to finally choose a treatment and start the healing process. I think the stress of trying to decide what to do was the worst part. There is no easy answer, but after doing lots of research and connecting with a Doctor I trusted, I felt like I was moving forward, no matter how long it took to feel better, at least I was on the "getting better" part of the journey. I realize that a lot of it is psychology as there are no guarantees, but I think that psychology plays a huge part in healing. I needed to choose a treatment to begin the "getting better" phase...waiting made me too anxious, especially as new symptoms started to appear. 
I had resigned to losing my hearing in the AN ear, but it hasn't happened so far, 8 months post radiation, and yes, tinnitus is really annoying, but a lot of non-AN people are getting it, so I'm hopeful that research will provide some answers for all of us someday soon. I've been taking some herbal remedies for my allergies and it's helping with the tinnitus.
Ruthie

[Pamm659]

I am going to be 55 this Saturday and just had Translab March 19, 2014 at Kaiser San Diego for a 1.4cm left AN. I had already lost 90% of my hearing and I did not even wait to get my 2nd MRI. I obsessed so much about it that I just decided to have it out. I am left deaf which is better than the distorted hearing I had before. After surgery, I had mild facial weakness that was gone in a month although I have mild tongue tingling and slight metallic taste. My tumor was touching my brain stem, had weird twitching on my left side of my face and horrible fatigue. I probably could have Watch and Waited longer but as I see it, I had already been in Watch and Wait 10 years but had not been diagnosed yet. Had I known that that ringing in my left ear over the years was NOT a sign of listening to loud music, I could have saved my hearing by seeking medical care sooner.  I have no surgical regrets at this time and love that the tumor is out. I do have some balance issues but went back to work May 22 doing Home Health Physical Therapy...go figure...I had never heard of AN in my 35 years in PT. So far, I am doing really good with my schedule.

With my experience and understanding of the Neurological System, I know I will never  be 100% but I was not 100% for at least 10 years with the hearing loss, fatigue and mild balance problems. Now, I feel GREAT but I know I have to be slow in changing positions, driving and never walk in the dark. Swimming Free Stoke is my most difficult activity.

To challenge our brains, we need to continue to do the things that make us feel wonky and unsteady but in a safe environment. I do therapy everyday and am psychologically giving myself as much time as I need to recover. Sometimes I feel like a Bobble Head and I embrace it. I just keep making myself feel that cause I know, one day my brain will compensate.

Good Luck and Stay Strong.

[keithmac]

I have gotten two more consultations from two top physicians in our field.  One of them has pointed out that yes, a growing AN warrants greater consideration for removal or radiation, but he also feels strongly that worsening symptoms (reduced hearing, increased ringing, etc..) also warrant greater consideration.  After talking with him, I immediately scheduled another hearing test.  My current physician feels strongly about observation with removal or radiation as a last resort since I am 52, my AN is 1.4 cm and is close to my AIC.

Any thoughts?  Thank you.  Rick

Also, I am resigning to the likelihood that my 65% hearing will sooner or later be total hearing loss.  With that said, what happens with the ringing?  Does it persist even after total hearing loss.  Sometimes I feel tinnitus is worse than deafness.  Sorry to sound so negative.

I'm sorry to tell you that from what I've learned about tinnitus we're stuck with it forever, even when our hearing may have gone, because it's to do with our brain and not the hearing mechanism.  I have a 14x9 mm growth but I don't know its location and have about the same hearing loss as you and tinnitus in both ears - 'loud' in my AN ear and less 'loud' in the other.  I've kinda gotten used to the tinnitus at this level but am always concerned it will get worse and/or that I'll also lose even the impaired hearing I have in my 'bad' ear.  I was 67 in May.

I don't see that stating how we feel is negative - it's simply how we feel.

[Mickey]

Hi Keith! Get over to the W+W brigade post board.  Started by DEREK and filled with alot of valuable info for especially for people our age. You`ll see my posts there also.  Derek seems too be taking a break and doing fine self reducing the size of his tumor. It`s  approx 7 years for me and all is well. Best wishes, Mickey

[keithmac]

Hi Keith! Get over to the W+W brigade post board.  Started by DEREK and filled with alot of valuable info for especially for people our age. You`ll see my posts there also.  Derek seems too be taking a break and doing fine self reducing the size of his tumor. It`s  approx 7 years for me and all is well. Best wishes, Mickey

Hi Mickey!  Although I'm still a newbie here I'm beginning to recognize names on the boards and I've read some of your postings already on the W&W forum with Derek's on my 'still to check out' list. 

Man this is a busy website with so much information!  It takes time to read it and I'm trying to find the most relevant material at the same time as trying not to become a hypochondriac.  I also need to choose the stuff that is relevant to our UK healthcare system as ours and yours are often very different.

Thanks for your welcome and all the best to you too.

[Mickey]

Keith, Derek is a product of the UK health system... I'm happy your staying proactive in your lifestyle. Take your time making your choices, remebering W+W is a viable solution. All the best, Mickey

[john1455]

Rick,

To answer your original post, tinnitus will remain regardless of what hearing you may have remaining. Tinnitus is an "internal" thing.

The only problem I see with your current physician's diehard stance on definitive treatment as a last resort option is whatever symptoms you will develop while watching and waiting, will likely remain with you despite having been treated.

If you choose surgery, then expect hearing loss. If you choose radiation, then the chances of hearing preservation is much higher.

[LakeErie]

"To challenge our brains, we need to continue to do the things that make us feel wonky and unsteady but in a safe environment. I do therapy everyday and am psychologically giving myself as much time as I need to recover. Sometimes I feel like a Bobble Head and I embrace it. I just keep making myself feel that cause I know, one day my brain will compensate."

Pamm, great comment. I had to challenge my vestibular system daily to regain my sense of equilibrium. It took exactly 7 months from the date of my surgery to wake up one morning and feel essentially as I did pre-op. Walking figure eights indoors in a hallway so I could always touch something when needed, and then walking outdoors with head movements, up and down and side to side, seemed to finally get me back almost normal.
Of course, I still have to be careful not to turn my head too fast and have night lights to prevent total darkness, but balance issues did resolve for me eventually.
And you also addressed the need for patience. We can heal only as fast as our brains allow us. That healing is faster for some of us than others. It is only my opinion, but noticing how long it took my brain stem mass effect to become normal again, over a year according to the follow up MRI's,
the de-compression of the brain stem/cerebellum can be part of the "wonky head" so many AN patients experience. Good luck to you.

[Pamm659]

I have a funny story to share...My first week back to work in Home Health Physical Therapy, I was at the home of a 90 year old man who lives alone in a totally 1970's home, who doesn't drive and is pretty far from neighbors and stores. I wanted to call and see if I could get him Meals on Wheels services and asked to use his phone since I left my cell in my car. I also asked him if he had a community phone book. I found a number that was listed under a title close to what I was looking for, picked up the phone receiver to call it. Only there was no dial tone so I pushed the button that hangs up the phone about 4 or 5 times and still nothing. Then I realized I had the phone up to my deaf ear...ha. I then called the number using my good ear and the number had been disconnected. After looking at the date on the phone book did I learn why...the phone book was from 1992.

Life is good...

[Sheryl]

Funny story - thanks for sharing.  We are always picking up the TV remote and wondering why we can't get a dial tone or why we can't change the station with the cordless phone!!
Sheryl