Author Topic: Waiting & Watching & minimizing symptoms  (Read 4732 times)

antoinette

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Waiting & Watching & minimizing symptoms
« on: February 27, 2005, 11:11:49 pm »
In Feb. 1990, I had a car accident, someone rear ended the car behind me who rear ended my car, propelled it 25 feet forward while it was stopped at a cross road. My neck went back over the seat headrest; I saw the cars behind upside down and was projected forwards towards the windshield. I barely touched anything or I did not feel. Someone was screaming inside my car although I only had my dog fallen on the floor. It was I.
A few days of nauseas, and my hearing went down one big notch. Doctor said it will come back. A few months passed, it was worse. Doctor said it is the shock. A year passed, nauseas, loss of balance, lots of falling, broken ribs, no more proud gait. Doctor said it may still be your accident or it could be age getting you early. I had no white hair, no wrinkle, not a single pounds too many. I was doing sport until that accident and was still canoeing and hiking in summer time and still working long, active days. Doctor said, well you can't be so young in your sixties, you have to face it. It is over. Then I fell again and tinnitus started big time. It is still there but I do not hear it. By then I had pains in my left ear, stabbing pain in the cranium, my face dropped on one side, my eyes did not close at night leading to damage of the cornea. Wow, I thought, aging is not for sissies!
But I fell again in front of a car and it was a doctor. He spoke with me, asked me to visit him. The discovery of this 1.5 cm AN was next. After 7 years of feeling like a crumbling building, it was a relief. I felt much better.
My ENT thought it might be possible to wait as long as symptoms were lesser than a possible poor outcome. So I waited.

I am still waiting.
But I worked at making repair in my facial weakness, I used plastic wrap for 3 years to keep the moisture at night in my eyes. My nose and throat had no moisture. It created some bad problems. But after the disappointment my GP had been, I did not tell her about my AN, I took care of all the problems myself. Exercises for retraining that drooping lip, and biofeedback to get back the tears and moisture in my eyes and eventually in my nose. I still have to give it a boost once or twice a month but I have not used drops or plastic wrap or goggles since 1999, so I am happy, because this was no fun, I need my eyes more than ever.
I hope to stay as I am now, having an MRI each years or longer, drink a lot of water, eat clean food, mostly veggies, not alcohol but half a beer a few times per months, Be active, involved, interested in many things. This tumor manifests itself once in a while. I make note about when and why. I must then relax and do something quiet. It goes away. That’s all. I will not touch it as long as it stays the same

mlwitte

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Re: Waiting & Watching & minimizing symptoms
« Reply #1 on: March 27, 2005, 11:06:05 pm »
In Feb. 1990, I had a car accident, someone rear ended the car behind me who rear ended my car, propelled it 25 feet forward while it was stopped at a cross road. My neck went back over the seat headrest; I saw the cars behind upside down and was projected forwards towards the windshield. I barely touched anything or I did not feel. Someone was screaming inside my car although I only had my dog fallen on the floor. It was I.
A few days of nauseas, and my hearing went down one big notch. Doctor said it will come back. A few months passed, it was worse. Doctor said it is the shock. A year passed, nauseas, loss of balance, lots of falling, broken ribs, no more proud gait. Doctor said it may still be your accident or it could be age getting you early. I had no white hair, no wrinkle, not a single pounds too many. I was doing sport until that accident and was still canoeing and hiking in summer time and still working long, active days. Doctor said, well you can't be so young in your sixties, you have to face it. It is over. Then I fell again and tinnitus started big time. It is still there but I do not hear it. By then I had pains in my left ear, stabbing pain in the cranium, my face dropped on one side, my eyes did not close at night leading to damage of the cornea. Wow, I thought, aging is not for sissies!
But I fell again in front of a car and it was a doctor. He spoke with me, asked me to visit him. The discovery of this 1.5 cm AN was next. After 7 years of feeling like a crumbling building, it was a relief. I felt much better.
My ENT thought it might be possible to wait as long as symptoms were lesser than a possible poor outcome. So I waited.

I am still waiting.
But I worked at making repair in my facial weakness, I used plastic wrap for 3 years to keep the moisture at night in my eyes. My nose and throat had no moisture. It created some bad problems. But after the disappointment my GP had been, I did not tell her about my AN, I took care of all the problems myself. Exercises for retraining that drooping lip, and biofeedback to get back the tears and moisture in my eyes and eventually in my nose. I still have to give it a boost once or twice a month but I have not used drops or plastic wrap or goggles since 1999, so I am happy, because this was no fun, I need my eyes more than ever.
I hope to stay as I am now, having an MRI each years or longer, drink a lot of water, eat clean food, mostly veggies, not alcohol but half a beer a few times per months, Be active, involved, interested in many things. This tumor manifests itself once in a while. I make note about when and why. I must then relax and do something quiet. It goes away. That’s all. I will not touch it as long as it stays the same

How iteresting that we both have been in car accidents, mine in Feb of 1988, rear ended as well, knocked out, seat broken and soft tissue damage to my kneck and lower back. Partially dislocated left jaw for me. I was active before with competive tennis and sailing as well as fast paced business. It felt at one point like some had stuck an ice pic in my ear and jaw.

Fast forward to last September when on a vacation in Kauai, upon landing my left ear (interesting) closed up. I went to a Doc in the islands - who thought it was a sinus issue blockage. It never cleared up so I went to my GP in CA, who sent me to and ENT in Nov. - who suggested and MRI but wrote me a script for steriods - which I never took. I just waited.

In Jan - I notice another decline in my hearing from September and sought out a different ENT. He did a full work up - including audio testing and noticed a slight hearing loss in my left ear. I said while rare, he wanted to rule out this inner ear thing with and MRI. I had that done on 3/15 only to fine out in the same day I had a small 7mm Acoustice Neuroma in my left ear. I have slight pain, fullness, ringing, minor balance issues.

The ENT I went to - Dr Fenn in No. CA - referred me to Stanford Medical - who saw me the next week. Lucky I guess. Anyway - I am going to pursue microsurgery while the tumor is small in the hopes of saving my hearing. I am in my late 40's and my family history is such that many of my grandparents lived into their 90's and almost 100. The Doc's at Stanford seemed to think the longer we waited the great the impact on the blood supply to the nerve in that ear. So I am going to move forward in July. I need to prepare for the worst case scenarios and also get fit for recovery.

I saw you message and wanted to respond as we had such similar auto accidents and outcomes. Peace be with you.



Marcus  :-)
We all fall down. God helps us get back up.
Life is a process consider all your options and live each day.
Like Winston Churchill, "Never ever surrender"
AN 7mm disagnosed 3/16/05 left ear, Surgery - Stanford 7/13 - Dr Jackler and Dr Harsh - total hearing loss in left ear

Becky

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Re: Waiting & Watching & minimizing symptoms
« Reply #2 on: March 28, 2005, 05:51:44 am »
"the longer we waited the great the impact on the blood supply to the nerve in that ear."

This is a very important consideration in treating AN's and other blood vessel compression considerations.  The ear is very delicate, indeed.

Becky

antoinette

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Re: Waiting & Watching & minimizing symptoms
« Reply #3 on: April 26, 2005, 08:40:36 am »
mlwitte, I wanted to reply to your post, which was so similar to mine.
But I am used to the simple way of e mailing and could not (still cannot) figure out the simplest maneuvers on the new ANA. How does one replies simply to a post? So I postpone and times passes.
It is important though to let you know that if I were your age, I would choose the best place to get rid of this AN. House is my preferred one but I know there are others. I have done nothing, my hearing has settled nicely to fake stereo effect and is clearer, but it is a truly amazing that in fact, that AN ear is now 95% dead and it is the good one that provides a sort of balance in sound, I believe mostly because the human body is meant to function symmetrically. Recently I had terrible pains in the temple and behind my ear, in the bone. It lasts a couple of seconds and may repeat it for less than a minute, but it is really nasty.
I am starting to thinking that I may have been wrong to expect a remission of this tumor, since I have known by e mail on the precious ANA that one guy had a spontaneous shrinkage and disappearance of the symptoms. . This is "involution" and I believed in it. I still do, but it may not be granted to me after all.
I would choose middlefossa, to preserve hearing and I would keep monitoring it each year or more often for the next 10 years. I may have some problems soon.
That accident did start it and I have understood why. By the way lots of the AN patients I have known did suffer a trauma to the head or neck before their AN started. There is a study in store here.
antoinette

cookiesecond

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Re: Waiting & Watching & minimizing symptoms
« Reply #4 on: July 23, 2005, 08:48:47 pm »
Antoinette,
 I was diagnosed in May with a 2-3 cm An.They first found it on a MRI in March. I was in an accident(fender bender) in  september 2004. I have continued to have neck/back problems and have been in PT since October 2004. I see a new therapist Monday.The last doctor i saw says this is a different approach. The problem is I'm not sure if the headaches are from the An or the neck injury. I am miserable. I have had an symptoms ( nausea, dizziness etc.) for several years and was treated for vertigo. inner ear and migraines.
Now I'm dealing with all of this at once. I do wonder if ther accident intensified my symptoms.I have surgery scheduled for August 2.
Lynn

 


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