ANA Discussion Forum
Archive => Archives => Topic started by: tatianne on August 07, 2006, 07:19:27 am
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The past week has been very difficult for me, its like im obsessing over this AN.
Im on the wait and watch and this is not easy to do, on top of that i havent been feeling great.
The ringing has increased, both my eyes feel very dry, an my other ear has these achy feelings that come and go every once in a while, i keep thinking that i have one growing on the other side and im NF2....I know i must sound crazy. :'(
I feel so much anxiety about this.
I dont know what to do.
T
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I was diagnosed in June with 9.5mm and the first neurotogist I saw recommends watch and wait. I am with Kaiser and have asked for referral to the surgeon who would actually do the surgery if I chose that route. I also did a phone consult with Dr. Slattery at House. (they are now offering cyberknife/gammaknife as well as surgery) I am also going for cyberknife/gamma knife consult, referral for Tinnitus, headaches, ear pain and pressure. The forum has taught me to be actively waiting but not to jump too soon to a specific treatment. I have found my anxiety level has decreased as I am getting more information from the various doctors. Also, seeing a physical therapist for the imbalance. I understand your up and down experience with symtoms. Looking for treatment for the symtoms is part of the "watch and wait". Hang in there and push for what need.
Bev
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Obviously, I'm not a psychologist T but your feelings of anxiety are normal.  I had to wait a little over six months to get my surgery scheduled and it was very troubling.  It seems like your every thought is about that little thing in your ear and if a gust of winds blows causing a tremor in the good ear you go Oh, No!, but many of the feelings are because you know its there consequently it becomes magnified.  If the feelings of anxiety and/or fearfulness continue for a long period I would recommend talking with you Doc and maybe finding someone local to vent too, perhaps even a professional.  Peace of mind is a priceless commodity.  I have a couple of folks who email me all the time about their fears and also just about stuff, trying to get their minds off of the subject.  If you have a confidante or best friend, etc., don't be afraid to spill it all to them, not to mention the wonderful people on the forum.  I doubt there is one person on this forum who wouldn't be willing to listen.  I know....I sound sanctimonious don't I?  I don't mean to be....Just know there are a lot of us out here rooting for you and you are not alone by any means.
good luck, I'll be praying for you....
Road Trip
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Tatianne: It was out of my anxiety that I had my regrowth removed, it remained very small and was growing very slowly but I couldn't stand being "monitored" any longer and it was driving me nuts. I had already lost all there was to loose from surgery the first time so I didn't see any point in waiting any longer for the surgery. My husband says he could see the sense of relief on my face as soon as he saw me post-op and I can remember clearly sighing a big sigh of relief when I awoke in NICU and knew I had come through the surgery safely. Some people are able to remain "monitored" for many years and the doctor's tell me I could have lived out my entire life without needing surgery on the regrowth (currently I'm 38) but I just didn't think that would be the case and I never wanted to have it get as big as it was the first time (grade 4 tumor).
You need to weigh what is important to you.....preserving the function nerves for as long as possible or you psychological well being.
What is you worst fear?
Kathleen
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thanks a lot for the replies, i appreciate your thoughts.
My friends and family mean well but they just dont understand, in fact i feel like they just try to avoid the topic.
My biggest fear right now ig to have a growth on my other ear, to find out im NF2. My other ear has been aching off and on and its scaring me. Im constantly checking to see if my hearing in that year is the same(usually while im on the telephone, thats how i noticed the change in the in AN ear). I feel pressure on my AN side of my head but I also get pressure on the other side once in a while, so I have myself convinced that there is an AN growing on the other side too......
I have three small children, im divorced and really afraid.
I need to be here and healthy to take care of them, they need me.
So I guess my biggest fear is not being here to take care of my children.
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Sweetie, you are going to be there for your children. This AN is not going to do that. It's hard not to obsess over these stupid things, especially when we "hear" them everyday in our ear and know it's sitting in there. And your anxiety is going to make your symptoms magnified. But I know it's very tiring to push it into the background and not to think about it. Especially when the diagnosis is new. Everyone is going to deal with this in their own way and in their own time, so I have a hard time trying to tell you what to do, but you really need to figure out a way to get control of your mental situation before you have a nervous breakdown!! Really! Play some nice music, play with the kids, meditate, cry your eyes out, see if there is a local chapter of AN support group in your city, talk to a counselor, talk to a clergyman/woman, go get a pedicure, walk in the park/woods/by the river/...whatever is pleasing and comforting to you. This is not going to kill you. But you have a "new normal" and it takes some getting used to. Talk to your doctor about your fears. Tatianne, if all of us on this forum could reach out to you and give you a warm hug and whisper in your ear...it'll be okay...we would. So pretend we are all there. Open your arms and feel the group hug. And listen....it'll be okay. ÂÂ
Love,
Sue in Vancouver
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Sue,
I have to respond to your awesome post. I couldn't have said it better! We could all use a big hug once in awhile. Thanks, Ann
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thanks you guys so much...
ive been getting some counselling which has been helping a little. My life is upside down in so many areas and this AN think just kind of put the icing on the cake for me. Just when you think, how can things possible get worse ??
Im trying to find a support group in my area, im in montreal quebec canada if anyone is aware of a group.
Sue you are a sweetie, your post brougth tears to eyes, i definitly felt your hug.
Dale, Kathleen and Bev thank you.
I have alot of support but i just feel like there isnt anyone (except you guys and girls) that really understand.
Thanks for the support and the big hug
T :-*
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Antionette is Canada way - she may have a contact or two for you.
Best Regards
Tony
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Hi there,
I'm sorry to hear how bad you feel. I think you are right, people don't understand any of this unless they have personally gone through it..Thank goodness for this internet. Being a MOM changes much of how we look at llife and our children seem to come first. My wish for you is that you do everything you can to feel better. You'll then make better decisions and those kids will benefit too. My thing was to take a bath, I would sit in that tub ALL the time!! Take good care, Pattibobatti
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This maybe outdated information, but it could be a good starting place for contacts.
ANA Canada
http://www.anac.ca
Booklet available: "Acoustic Neuroma: Stereotactic Radiosurgery and Fractionated Stereotactic Radiotherapy" (20 pp). Contact the national office at 800/561-2622 or 780/428-3384 or Irma Arnold at 705/429-6704. Canada does not yet have a Gamma Knife center, and Canadians having such treatment in the USA risk not having insurance coverage approved.
Canada is expecting its first Gamma Knife machine at the Health Sciences Centre in Winnipeg, MB in the fall of 2003. Cancer centers in Toronto (Princess Margaret Hospital) and Ottawa have introduced Linac FSR treatment.
Email: anac@compusmart.ab.ca
Information provided March 2003 by:
Cheryl Bauer
ANAC - National Coordinator
Ph: 1-800-561-2622 /(780) 428-3384
Fax: (780) 438-4837
Email: anac@compusmart.ab.ca
Thinking of you
Raydean
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It sounds like you have a lot going on right now (three young kids on your own is more than enough!), so one more stressor definitely isn't optimal. But while an AN can make life a bit more complicated for a while, it can be dealt with and then 98% left behind. (An MRI every few years for monitoring isn't a big deal.) I know how worried you must feel about your kids - I've got two little ones myself. It took me a long time to get over that one (and that worry still nags me every once-in-a-while), but this will not affect your ability to be a mother.
((((hugs))))
Katie
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I hope we have helped you Tatianne (you have a beautiful name, by the way). I have been thinking of you all day and I sincerely hope you will soon find some peace of mind. We all have our days and nights and we never know when fears and anxiety will pop up and take over. I just get MAD. This is so FREAKIN' IRRITATING. And the medical bills. That is frustrating for me. I don't fear for my life with this AN...Heck, complications from Diabetes will probably do me in, or a car accident, or a stray meteorite, or lightening, or a tsnunami, or an earthquake, but not the AN. ;)
Hugs again and a kiss on the cheek! :-*
Sue in Vancouver
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thank you so much everyone. :D
My doctor actually studied at Harvard in regards to ANs for two years, he is mentioned on a MAerican neurology site as one of the few doctors in USA/Canada that specialize in ANs and NF2 so i think im in good hands. He definitly suggested gamma knife as the best treatment for my case. although he dodnt say if i would have to travel or not. I didnt even think about that, i assumed we had this machine here in Montreal. I will have to ask the questions.
You have all helped me so very much, I sincerely appreciate all of your replies, all of your kind words.
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I have read only 5% of all ANs are NF2. How accurate this is,is anyones guess. The odds are just the stress of the situitation are making you feel every ache pain that is a bit off. If you had a tumor on the other side at this time then it should have shown up in the MRI. However any ANer should always be alert with your MRI's as I was found to be NF2 2 years after my surgery for my first tumor. I am lucky to be the older adult onset. My biggest worry is if my daughters will get it as am told if they do,it will probably be at an older age also. One has had a MRI and is ok for now. Time will tell for us all.
Hang in there and good luck with your AN journey. Cheryl R.
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thanks cheryl
Im wondering how old you are and how old your daughters are ?
I have read that 50% of the time NF2 is genetic and the other 50 % its a random occurance, if its a random occurance then it is not geneticaly passed on to your children.
Whether this is accurate im not 100%, i reed it on an internet site about NF2 but I dont put my faith in most things i read on the internet. My doctor actually told me absolutly not to read to much on the internet, that a lot of information is outdated and incorrect. He felt it may cause me anxiety for nothing.
All the best to you and your daughters, thanks for sharing with me.
T
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my mri actually read"no significant abnormality on the left 7th and 8th nerve " which makes me wonder is there was something there but not yet visible in order to mention.....
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Look at the bright side ... if it is something they found it very early which should bode well for you in the long run.
Early diagnoses for anything is always a positive, even though it seems like a negative.
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Hello again. I am 54 now. My daughters just turned 29 and 31. I have a weird family history of having older parents. My mother was 39 and my father was 53 when i was born. My parents died when I was 20 and 21. I don't think they had symptoms of NF2 but my father did have some hearing problems which I think was more due to old age and diabetes. I have some much older half siblings who are fine.
Sounds like you will have to keep watch but would not worry too much for now.
Cheryl R.
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thanks for the infor cheryl, yes lets keep in touch ;)