Waiting while learning & monitering

[antoinette]

When my AN started? I do not know for sure..
I can only date it, not from the MRI which confirmed its existence, location and size, but from the time when symptoms were so obviously pointing in that direction but were misinterpreted and misdiagnosed by doctors, GPs, ENTs and neurologists. Symptoms are still there, but do not disturb my quality of life anymore and they became a gauge to learn about what affects the rest of my body, health and moods.
I have made lists of the symptoms at the time they drove me to such despair as suicide appeared the only solution. The doctors I saw grabbed the page, showing how much they wanted to keep it.
The only solution was treatment whether surgery or radiation, and my age was not a consideration then.
I hesitated  frighteningly, preferred radiation’s, then changed opinion and choice, but during all these years had to do something to feel better, look better and finally, it convinced me that “Iâ€? can live with AN providing I take care of myself and obey my instinct and some universal logic.
Date of symptoms. Early 1990.  Almost complete loss of hearing in left ear, dry eyes, weakness of lower lip, nausea, stabbing pains in cranium, tinnitus with white flashing in eyes, balance gone, jerking gait, feeling of concrete in ear and cranium very hot to the touch, loss of confidence.
Size in 1997 :  1.5 cm x .8 cm, left side, entangled with 3 nerves, close to cpr angle
Size in 1998 :  1.8 cm x 1 cm, another 1 cm schwannoma near by on hypoglossal canal
Size in 1998 :  1.8 cm x 1.2 cm, symptoms increase, brake ribs twice when falling
Size in 1999 :  2.1 cm x 1.4 cm, have started exercises for lips, successfully
Size in 2001 :  2 cm x 1.5 cm, biofeedback for dryness of eyes completely successful, vertigo better
Since the AN size has not changed, MRIs are only 2 years to 18 months apart, the symptoms have almost disappeared 90% of the time, and when they are back it is for reasons of not observing the few diet rules I have found to be helpful. Mostly drinking water slightly over 1 liter per day, small amount of protein daily, and dark green vegetables also seem to help. A glass of vine will not hurt anymore as well as coffee and half a beer. I am careful with sugar and use of salt, only natural sea salt from Israel sparingly.
As it is, I will keep this AN to the end, I suppose, and feel good all over because of it.

Now! We could exchange observatioins among those who are waiting, while they learn what treatment they will opt for.
antoinette

[Larry]

Antoinette,

How brave you are. I have posted my situation elsewhere on this site. briefly, I had a 2cm an removed 3 years ago and it has returned. in the last 6 mo9nths, it has not changed and my ent now says to watch and wait. He no longer recommends any treatment on "small" an's. I guess it depends on whether the tumour is affecting quality of life and whether it runs a risk for other issues. However, your story is intriguing. I think diet may be something to look at. I will certainly be trying different things. I am sure your history will be of great value to the medico's and I think all those that are in the wait and see mode should keep a record of events like you have so that a history model can be hopefully used to help others.

Larry

[Desilu]

Hi Antoinette, I'm am really confused by reading your post maybe I just don't understand your situation. It appears to me that you have an AN that you are monitoring and it continues to grow. The treatment that you have chosen is to watch and wait. Eating well and taking care of yourself gives you peace of mind?  You have to take control of your AN instead of it taking control of you. I would hate to see it debilitate you or worse yet be life threatening. Have you researched all of your options? I am truly concerned about you. I was on the wait and watch program for 5 years. Each year when I went for an MRI it was nerve wracking. Did it grow or not? I felt like I was a time bomb waiting to go off. When my AN started to get bigger, I knew it was time to do something about it. I hope your quality of life continues to remain good. I guess only you will know when it is time to do something about it. I wish you the best, whether you continue to watch and wait or seek treatment.  Ann

[Kathleen_Mc]

Antoinette: I too am concerned for you. It seems you have opted to just "watch and wait" until this thing is life threatening and/or kills you. The tumor is growing and is of a size that is showing need to be treated. Are you afraid of what the quality of your life will be afterwards? This is not a matter of "mind over matter" and we are not talking about a part of your body that can easily accomidate a mass continually growing. Please for the sake of you health rethink your options and seek medical advise.
Kathleen

[antoinette]

Thank you for posting your concern about my questionable choice of waiting.
I have a good ENT,(even quite famous and head of the research department) I trust him, he advised not to touch it in 98, I could ask to have it "done"  but do prefer not to have any treatment, unless I suddenly have to.
The fact that I have another tumor similar about 1 cm away from the AN and another one has been discovered in the adrenal gland of the right kidney makes my choice simple. I figure they must be all linked to something and treating one will affect the others, very likely by making them increase suddenly. I know the one on the hypoglossal canal is quite difficult if not impossible, to remove. It would have to be another surgeon. All this would take such a long time, too long for my age. Radiation is to be absolutely out.
The only way is to live with it, worrying makes it worse, increasing the pains and dizziness. But I can live with it and forget I have it 90% of the time. I even had the surprise of tasting silence, for a few minutes mostly, but it was a weird feeling after 15 years of omnipresent tinnitus. Some mornings, it takes a while for the tinnitus to come back from almost completely gone. When I go for my MRIs it is with the conviction the tumor will have shrunk. It is not "brainwashing", it is that symptoms are so much lesser unless I do something wrong in my diet or if I am upset or depressed.
I also search a reason for these tumors as I have 3 children and I fear they could get it too.
I will come back on my observation of this tumor if you want, but I wonder if publicizing it is not a mistake for some patients need to act sooner than later and I am only an example NOT to follow (unless partially while waiting to make a decision). This is not even a proof that we can wait as they are all different and can start growing fast... or not at all.... or grow again after any treatment.... or shrink to almost nothing as it happened to one of our list member in 99. God knows that he was worrying so much... and next MRI, the AN was half the size, he had to have another to check and, then, he said "Good-bye, I am the lucky one!"
antoinette
PS, Is there a spell checker in this list system

[antoinette]

Larry, I am sorry your AN returned. You can easily guess that over all these past years it has happened a few times and it was always a terrible feeling.
Some had a second removal and apparently it was easier and faster the second time, I guess because the way to get there was still wide open and did not have to be done again. Some had radiation and it worked for some and it didn't for some others, surgery had to occur again in these cases, but the nerves did not have to be 'cleaned up" so closely, for 2 reasons I believe. and the effect of the radiation are expected to keep a regrowth from occuring then, but even if not always sure it is frequently satisfactory. Most never have to think about it again whatever the treatment.
Doing nothing!  I know the feeling... It can work if you do not make yourself sick with worry, and it you keep yourself in good health, also using the general rule of 'moderation" .
I wish you to relax and monitor this regrowth, Larry, to learn about your own body and listen to it, it will tellyou when to act, believe me!
antoinette