Thanks everyone who answered, I'm much calmer right now

[catlover]

 Hello!
Thanks to everyone who answered. I feel much calmer and happier now. I agree that the outcome of surgery must be much better if you can stay positive. Discussing and getting answers from you who know much more about ANs than I do is great! I've been stuck by the computer for several hours the last week and now, thanks to you, I know much more about surgery and ANs and I feel that I can focus on other things than my AN, on my pupils in school for example!   

It is wonderful to hear that I, hopefully, can get back to work as a teacher after surgery and that others have managed to even continue as musicians with SSD. That's fantastic! I will also check the opportunities go get treatment with GK. I know they use radiation as well in Sweden, but my doctor wasn't very positive to GK. He only recommended it to older people because of the radiation risks, but the more I read on this forum the more suspicious I get about his opinion that it would be dangerous with GK radiation. There are so many of you who are satisfied with you GK treatment. I will consider GK as well as surgery. We'll see what the doctors say on Tuesday 2nd December. Thanks again for all your support!

[hruss]

hello catlover!!

i did not reply to your previous message (recently i have not been in front of the computer a lot) but I know that there are wonderful people here ready to answer!!
the reason why I have not been recently around is that I have had a surgery and they ask me to restrain from computer. So my doctors also suggested me having a radiation therapy but I decided to follow the other path and went to Germany for a surgery! I wanted this bugger out of my head!
Plus, I am 25 and I saw that much older people are treated with radiation!

I am glad that you are calmed down, it is really important!

Please do not worry to contact me if I can be of any help to you!

Best,
Hrissy

[catlover]

Hello Hrissy,
Thanks very much for answering! I can't believe you have been doing three sigmoid surgeries! It's unbelieveable how you have coped with that. It's nice to hear that you are doing better and that you can sit in front of the computer again for a while. it's good for us at the forum anyway! How do you actually feel after surgery? Äre you tired? What have the doctors said about your face? Will it heal and how many months do they estimate it will take? I am very concerned about facial paralysis and about SSD as well. It is very hard trying to understand how it feels to be deaf in one ear and also having problems with the balance, dry eyes and also facial paralysis. Do you have problems talking and eating or how does the paralysis work?

What have the doctors said about going back to work? I'm curious because I've almost decided to go for a translab. My AN is 1,6 cm large and I am afraid I would get more symptoms if I wait. I have more or less none symptoms right now so I must say I am very lucky! I am also thinking a lot about tinnitus. In the beginning I had some tinnitus and it annoyed me a lot, but now I almost can't hear the tune. Maybe the sound in my ear is better now or otherwise my brain is used to the noise so that's why I don't hear it anylonger. I am thinking about what to do if I get a terrible tinnitus after surgery. Do you get worse tinnitus if you've had a lot of tinnitus before the surgery or is it only damage to the nerves that decides how much tinnitus you get post-op?
I've learned that here in Sweden the doctors "kill" the balance nerve 3 months before surgery by putting some drops into the ear. I suppose it's a way of giving the brain a chance to activate the balance nerve on the healthy side so much that it can control both sides after a while. Äre the doctors doing this "trick" in the USA as well?

I think I have a lot of silly, silly questions, but so many questions are flying around in my brain and I am so grateful for this forum and the wonderful people here. I am so lucky I found it.

Take care and I wish you a fast recover!

Catlover

[hruss]

hi catlover!!
I had my third surgery in Hannover, Germany as you can see in my signature! it was not that far behind so I have to wait for my nerves to calm down. Meanwhile, I did not know I was deaf with my right ear after the operation, by the time they made a hearing test for me. It is not as bad as you imagine - it is recognizable for me only when someone whispers in my damaged ear!

Do you have problems talking and eating or how does the paralysis work?

I had problems with talking at first - people asked me to repeat what i said a lot because it was difficult to pronounce some of the vowels like p & b. now my talking has improved and I think i have slighter problems.

I try to eat on the affected side but i have to admit that it takes efforts. i do drink only through a straw, though. Eating of soups and juicy fruits is more difficult because the juice comes out of your mouth and i have to eat let's say oranges and mandarins over the sink.

I have some problems with the eye too - it did not want to blink all the way down so it got very red. I tried to treat it but it did not help. so my doctors here in Bulgaria shut it as the best way for it to cure. Now i have only part of the eye shut not the whole of it and i can look through it. it is uncomfortable but i  got used to the shut eye!

What have the doctors said about going back to work?

I will go back to work probably around March. They told me that the most important now is my eye and the moment they remove the stitches and can watch properly there is no hinge for me going back to work. Now if you don;t look my eye, you cannot say i had a surgery - my face is well symmetrical!! Only when i smile you can see the difference because my smile goes only half way. Doctors say this is temporary, but it will take from 3 to 6 months to be ok.

Do you get worse tinnitus if you've had a lot of tinnitus before the surgery or is it only damage to the nerves that decides how much tinnitus you get post-op?



i did not have any hearing loss or tinnitus before surgery. My only symptom was the loss of balance that got more and more severe. Post op I think i have a kind of stange feeling of pressure in my damage ear but it will fade away with time. I have been told that it will never disappear, though!

I've learned that here in Sweden the doctors "kill" the balance nerve 3 months before surgery by putting some drops into the ear.

I have not heard of killing the balance nerve. Neither doctors in Bulgaria (where i had my first 2 operations), nor the ones in Germany put some drops to kill my balance nerve. Brain learns to compensate for the loss pretty fast, i think! I do not know how doctors do it in the USA, I never have had an experience with them!

Never called your questions "silly". You have a lot of questions because you have done a thorough research! You are on the right place and you can ask as many questions as you have. I know how difficult it is to do the best choice! I am here (and I am sure a lot of other people too!!!)

If I have unanswered any question or you want to ask more, just go ahead!!

Take care too,
Hrissy

[catlover]

Thanks, dear Hrissy for your answer. I'm becoming more and more comfort with the fact that I'm going to have a surgery. Last Tuesday I met my doctor and we decided that a surgery in March/April 2009 would be necessary because my AN has doubled its size during the last year. In September it was 1,5 cm. I thought that the doctors would suggest me to do a translab surgery but they suggested a kind of sugery where they go in behind the ear, near the neck. I don't know what this approach is called in English. Does it sounds familiar to you? Is it the same approach as the sigmoid approach? Anyway, the last week in December I'm going to see the doctor to "kill" my balance nerve. When I asked him why doctors in the USA and in other countries don't kill balance nerves, he told me that the Swedish doctors were the first ones to test this and that it probably will spead to other countries. I don't know what this will mean to me, but I hope for the best and I hope the brain will adjust quite quick so I won't be dizzy the whole Christmas.   

Best wishes,

Catlover

[lacey7]

Hi catlover,
I'll try to answer your question to tinnitis first.  I had that symptom before I had surgery.  In fact, that, and loss of hearing in my left ear is what lead me to an ENT doctor.   I had translab, as you can see.
My surgeon told me that they cannot do anything about tinnitis, b/c it's coming from the brain.
Mine is about the same as before surgery.  I was hoping it would go away, but no luck.  I guess you just get used to it, as time goes by.
It is hard to go to single sided deafness (SSD), if you have translab.  BUT, I'd rather have that, than a huge tumor growing bigger in my brain.  You learn somehow to live with it.  If someone is on my left hand side and talking to me, I have to turn my whole face to them, to be able to hear.  I haved learned that it could be worse.....you could be totally deaf, like some people are.  You have to look at the positive side. 
In the US, my doctor never put something in my ear 3 months prior to surgery.  Maybe we will catch up with Sweden in the future.  I hope it helps you.
It is very scary when you first learn you have this.  But, you are not alone.  You are so fortunate to have found this wonderful group of people.  I found them about 2 months before my surgery.
I did not have any facial problems with my translab.  I'm so grateful. 
I'm sure you and your surgeon will decide what is best for you.......and go for it.  You really need to trust your surgeon.  That is so important.
Trusting God helps, too!!
If I can help you in any other way, please let me know.
Lacey

[catlover]

Thanks Lacey, your answers helped me a lot as well as the answers and discussions from the others on the forum. It is such a great place I have found on the Internet.

I still think a lot about different surgeries and different approaches. What are the advantages and disadvantages related to the approaches. I have learnt that with the translab the risks for facial issues are less, but what about the approach from the neck? I also wonder about if it is harder to get rid of the whole AN when you do the approach from the neck. My doctor's reason for choosing the approach from the neck was that my hearing is perfect and that they maybe could save some of the hearing. From my point of view it is better to loose hearing on one ear than having a bit of the AN still in my head! On the other hand, he hasn't said anything about not being able to take the whole AN away, I'm just spectulating.

Well, it's time to go to bed here in Sweden.

Have a good time all of you!

Catlover