Author Topic: I am also new here and I am also scared!  (Read 3955 times)

catlover

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I am also new here and I am also scared!
« on: November 21, 2008, 06:40:09 pm »
Hi everyone,

I first visited this forum in February 2006 when an MRI showed I had an AN size 8 mm. At this point I had no symptoms, except from some tinnitus. My tinnitus was the reason why I contacted the doctor in the first place.

The day I was told I had an AN was the same day that I had my teacher exam! Anyway, I became a wait-and-watcher and life went on. I have three kids, two boys (17 and 14 years old), a girl (17 years old) and a nice husband. I also had a lot of things to do at my new job as a teacher. Every six months I went for an MRI and the first MRI showed that my AN hadn't grown and I was happy and didn't think more about it in the following six months. The second and third MRIs showed no growth at all and life was wonderful!

However, my last MRI showed a growth of 4 mm and my AN is now 1,6 cm. I am thinking a lot about if I am going into surgery or not. The doctors have looked at my latest MRI and I'm waiting for their proposal concering surgery or not. Right now I don't have much symptoms - my tinnitus is more or less gone, I have almost full hearing in both ears and my balance is OK. I can walk in the woods and ride my bike to work, so I am satisfied. On 2th of December I'm going to see the doctors and have my hearing and balance checked and perhaps they'll tell me that I have to go into surgery and that is what scares me to death, right now! I am afraid of everything, for example that the doctors have a bad day on that day of my surgery and drill my head at the wrong side! I am also very afraid of getting a stoke during or after surgery and of course I am very worried about balance issues, facial issues and nevertheless, hearing issues. I am also very afraid of dying an I have already planned my own funeral, more or less. I already know that if I'm going into surgery I'll loose my hearing om my right side (SSD) and the doctors have told me that it is much more difficult to deal with than I thought from the beginning.  Is there anyone out there who is a teacher like me and who has been able to get back to work with SSD?

I am, by the way, 42 years old and I live in Sweden in a little town called Hässleholm in the south of Sweden. I haven't noticed any others from Sweden on this forum yet. I apologize if my English now and then is wrong, but I think you all know what I mean.

Thanks for all helpful information and interesting books you gave ut.

Have a nice weekend from Catlove       :(

AN found in February, 2006, size 0,8 cm
Surgery 20th May, 2009, retrosigmoid approach
SSD and balance issues
Forever grateful to Dr Siesjo and Dr Kahlon, University Hospital of Lund, Sweden
Two AN:s found 1st March, 2016
Waiting for GK

Mickey

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Re: I am also new here and I am also scared!
« Reply #1 on: November 21, 2008, 07:30:54 pm »
Hi Catlover! I am also waiting and watching with a AN 12X6 mm. I feel for what you are going thru. I just wanted to give you confidence that what ever you decide that nowadays this procees is a very reasonably safe and with the size your AN and age is at much more positive in recovery. I`m a member of an AN club here who just went to a fantastic meeting in Oct. It is amazing how far the treatment has come over the years.There`s a good chance your hearing can be preserved. I`m wishing you the best! God bless, Mickey

sgerrard

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Re: I am also new here and I am also scared!
« Reply #2 on: November 21, 2008, 09:36:55 pm »
Hi Catlover,

I am a little confused. If it was 8mm, and it grew 4mm, wouldn't that make it 12mm, or 1.2 cm?

Anyway, 1.2 or 1.6 cm is still small, or just barely medium. You can probably watch and wait another 6 months, which is tempting, since you seem to have no symptoms at the moment. If you do have treatment, you could also consider radiation. The Gammaknife machine was invented in Sweden, so I think there is probably one there.

If you do have surgery, you will not die, they will open the correct side of your head, and you won't have a stroke. The first few days you will not feel too good, and you might have some facial, balance, or hearing issue afterwards. By most accounts on this forum, SSD is not that difficult to deal with. With an AN your size, you would not be expected to have any long term side effects, but you might have some temporary issues for 1-6 months. All in all, not a bad outlook.

It does help to find a good experienced place to get treatment, and a doctor who has treated ANs before. There have been some discussions about various locations in Europe, if travelling is an option for you.

Hopefully you can watch and wait again, and we will hear from you in another 6 months. If not, you can do some research on this forum and elsewhere, and find a good treatment option that works well for you.

Wishing you the best,

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Jim Scott

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Re: I am also new here and I am also scared!
« Reply #3 on: November 22, 2008, 04:49:57 pm »
Catlover:

Welcome to the forum.  I was sorry to learn that your AN has grown and surgery may be in your future.  Although AN surgery carries risks and hearing loss in the affected ear is one of them, most of your fears are normal but probably unfounded.  There are many, many people that read and post on these message boards who have gone though the surgery and went on to resume their normal lives, including teachers and even musicians, all with SSD!  Some of them will likely post messages to you on this thread.  Meanwhile, please stay connected here and try not to become overwrought with fears and worries.  We're here to help and inform you in whatever way we can. 

I once corresponded with a fellow in Sweden (via the internet).  One day, he complained that the air conditioner in his car didn't work.  I replied, (with what I assumed was droll wit) that, living in Sweden, why would he need an air conditioner?  He responded, with equally droll wit: "Oh, we have summer in Sweden.  Unfortunately, last year, I was working that day and missed it".  Chalk one up for the Swede!  :)  True story.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

mk

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Re: I am also new here and I am also scared!
« Reply #4 on: November 22, 2008, 07:20:46 pm »
Hi Catlover and welcome

As you will see on the forum there are many positive stories and good outcomes after surgery, if you end up needing one.

For what it's worth I was also scared of surgery. I had GK 7 months ago. I had minimal symptoms before treatment, just facial numbness. 7 months later, the numbness remains the same and I don't have any new issues.

At your size you still have choices, and there is no need to hurry. You will obviously need to get your AN treated, since it shows growth, but you have time to research all the treatment options and decide which one  is more suitable for you.

Feel free to ask any questions you want. That's why we are here  ;)

All the best,
Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

RosemaryL

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Re: I am also new here and I am also scared!
« Reply #5 on: November 23, 2008, 04:42:41 pm »
Hi Catlover:

Being scared is understandable - it is scary.  That's why we each want the absolutely best doctor we can find.  Your tumor is still small and it has to be easier to remove a smaller tumor than a larger one.   When you read our messages, look at our signature lines - most of us tell the size of our tumor and the type of treatment used. 

My single best recommendation is to schedule your surgery (or treatment) for a Tuesday.  On Monday, some folks are recovering from the weekend.  On Thursday and Friday, they are already thinking about what to do on the Weekend.  So if you have surgery on Tuesday, then you get both your surgery and your first recovery day on days when most folks are really focussed on their work.  And you also get the Monday before to get all those last minute things done at home.

My second recommendation is to gather as much information as you can - from your doctors and from us.  Then make your own decision based on things are most important to you.  And when you have made the decision, commit to it and think only positive thoughts about your outcome.  Worrying can't help; thinking positively can.  BTW the "think positively" advice came from my neurosurgeon.  He said people who think positively about their surgery have better outcomes.

Rosemary
also a cat lover

1.5 cm right side AN removed by retrosigmoid approach, 12/1/98
Laligam Sekhar and Sanjay Prasad, George Washington Univ Hosp
deaf on right side, facial feeling and function fully recovered

Kaybo

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Re: I am also new here and I am also scared!
« Reply #6 on: November 23, 2008, 05:57:36 pm »
Catlover~
Hi!
I just wanted to comment on the teacher question...there are several teachers on here that had surgery and have successfully returned to the classroom.  I don't teach now because I stay home with my children but I had surgery at 25 (before I had kids) and I was a 1st grade teacher.  I did have a few complications, but I returned to teach at 3 months.  I am sure others returned even sooner.  I went on & taught for 6 more years before I was able to be a "stay-at-home" mom full-time so it is DEFINITELY doable!!   ;D

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!