ANA Discussion Forum
General Category => AN Issues => Topic started by: Suzy on November 14, 2006, 06:22:53 pm
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I haven't been online in quite awhile so I thought I would give everyone an update. I had retrosigmoid surgery 8/8/06. It's been three months now and I am doing very well. I do have a constant loud humming in my left ear, I have a metallic taste that didn't occur until 1 month post-surgery, and I walk a little clumbsy when I am really tired. I haven't had a hearing test yet to determine how much hearing loss I have as a result of the surgery, but my guess is that I lost about 60%. Prior to surgery, I would wake up in the middle of the night or early morning with terrible headaches that would last until noon. I haven't had a headache in 3 months and I can sleep like a baby now!! I must tell you that the doctors told me that didn't think my headaches had anything to do with the AN....I believe otherwise. I thought it might be a good idea to let others making an AN decision know some of the results after surgery. I spent 5 days at Johns Hopkins, which in my opinion is an awesome hospital with great staff. I didn't have to take any pain medicine other than tylenol after 3 days. My AN was very small, only 1.1, so I did have options. I chose surgery because I am the type of person that would lie in bed and think about all the "what if's". I am 51 and in good health. I thought surgery would be easier now than in my later years. I just wanted this whole thing behind me. I must tell you all that I am a big chicken. One who passes out when having my blood taken. Strangely, I never passed out, never shed a tear, and quite honestly, the whole experience wasn't nearly as bad as I had imagined. It's amazing what we can do when we have to. I truly think I am a stronger person having gone through this experience. I am very surprised to learn that so many people that found out I had an AN have told me that had one, or someone they knew had one. I bet I could name 10 people within a 100 mile radius that experienced an AN. It makes me wonder if its true that only 1 out of 100,000 really get one. Maybe more people get MRI's now so it's much more easily detected. I know one thing though....I never played the lottery but I do now!!
I hope all those going through the decision making choose the best choice for them. I truly think the decision making was harder than the surgery. To all, best of luck.
Suzy
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Suzy,
Thanks for posting and sharing your experience. It's good to hear/read about one that went so smoothly. I am so very happy that you did so well. Wishing you the best in getting better and stronger with each passing day.
Patti UT
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Hi Suzy and thanks for your update.
I really like hearing a post op story like yours. And on top of what sounds like an uneventful recovery (yippee) they saved your hearing!!  Congrats are in order for you all the way around.
Kathy
ps:  because your hearing is less than normal, can you tell where sound comes from?  That is what I miss the most being SSD.....pout, pout....
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Thanks for sharing your experience. I am in the first stages of getting mine taken care of. For some personal reasons I am wanting to have the microsurgery rather than the radiosurgery, but the more I read (on here and other websites) the more I question if that is the right way to go.
I have only been on this website a couple of days, but everyone has been great and thay have all offered great information. I'm glad to read that your op was uneventful.
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I've reported my story so many times on this forum. As an update to complications I may have had from surgery, I had none. In particular I am another surgery patient who had very few headaches. I have been lucky.
I have celebrating news to report today.ÂÂ
My MRI is clear, that 2 cm thing is out of my life!
I Boppie, age 65 now, almost one year post op, accept this award. Thank you, Thank you! Because this forum helped me gather facts and new friends, and because we found a gem of a neurosurgeon, and because my family took such wonderful care of me, with the grace of God my life is back together. I will celebrate with hot chocolate! :)
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That's great news, Boppie, go all out and put marshmallows on top.
:)
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Suzy
My AN is about the same size as yours was, I am 48 and I hope to have it removed Retro in January 07. Thanks for posting your message. Everything I read brings me up or down and it's great to have a reason to be optimistic. Where I work there are 3 of us with AN's out of 2500. Thanks for bringing some joy into my evening.
Richard
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Suzy and Boppie - woo hoo!
great news.
laz
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Boppie:
What great news!!! That first year MRI comming back clean is a HUGE deal!!
Toasting to you, Kathy
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Kathy,
Yes, I forgot to mention that it is difficult to hear which direction sound is coming. I really noticed it when I thought I heard a funny noise while driving my car. I am usually really good at pinpointing sounds. I definitely find that much harder. I am going to a concert tonight so even though I have limited sound in my left ear, it will be like surround sound again tonight. Life is pretty good.
Take Care,
Suzy
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Suzy - I'm happy to hear that your surgery was successful and you're headache free. I had surgery at Hopkins in July - Was your surgeon Dr. Tamargo? with Dr. Niparko?
I had headaches before surgery, too and was told that they were not caused by the AN..... I don't believe it!
Marjoryb
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:)
Suzy, Boppie and all...
That is worth a celebration. We will all raise our glass tonight to all the success stories! YAHOOOO!
I can't wait to join you all in a success story. I'm on the big counting down. "Wow," the waiting is hard.
Yippppeeee good for you!
Take care and make it hot chocolate with the sprinkles on top of the whipped cream, marshmellows..............heck, put a shot of something in that hot chocolate....maybe a liquor!
Cheers,
Palace
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Suzy, Boppie and all.. time to celebrate! I'm feeling a martini coming my way in your honor! :)
Phylo
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Suzy and Boppie,
Hey, lots of hurrahs for you. Really good news.
A P.S. for brucifer?... Gk and Ck do not give headaches anymore than cut open sugery. I had FSR and yes about 3 months later I did have headaches. But i have not thought of them or taken a headache pill for some weeks/ months now for any head pain in my head . So i personally do not think the treatment itself is a reason for any headache but rather what goes on inside regarding any nerves/ tissue/ pressure/ swelling/barometric pressure/ water content in any of the previous mentioned along with blood vessels..... etc.....
hurrrah!
Windsong
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I think i see what you are saying now brucifer.... :) thanks for clearing that up for me.
I guess i was wondering why you had said gk or ck may very well have etc.... re the headaches, but i see what you were thinking now.
True, shrinkage does take time with radiation. Then again some never shrink but sure do stop growing....and for many headaches never enter the picture.
I am NOT windy as you addessed your response to my PS lol...
That's ok...
I am Windsong.....
Stay well.
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I think that in your case, your decision had a lot to do with your headaches going away. Had you had FSR or GK, you may very well have still been experiencing headaches. You went with your gut feeling, and I'm very happy your choice worked for you. Congratulations!
Bruce
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So glad to hear about your recovery Suzy. I go in on Dec. 7th. I am trying to focus on positive stories.
We have three people in the company I work for inlcuding me with AN's. Weird huh?
1 had surgery twice - not sure of her situation now as she has left the company.
1 had surgery once and gamma knife the second time, now remains stable after 2 years. She has been very helpful to me in sharing her experience.
I had Cyberknife in 04 and will now must have surgery in December given mine continues to grow.
...And 2 people I work with each have a friend's that had an AN, one from Texas, one from my town.
...And, when I was having Cyberknife treatment there was another person from the small town of Tacoma, where I am from, at Stanford having the CK treatment at the same time.
I have noticed alot of people having this thing treated twice. Doc told me some have more stubborn(aggressive) tumors than others. I haven't seen anybody talk about doing it a third time. (whew!)
I am wondering if "they" need to update their stats... and if there might be something environmental that may contribute to a gene weakness... like sitting in front of a computer almost every day for 24 years like I have.
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Hi. I am considering surgery too, with the same doctor. My AN is about the same size as yours, 1 cm. I will be 51 in a few days, pretty healthy. I found out about this AN after a car accident, I toolk an MRI an they discovered it. That was in 2004. I do not have strong headaches or otyher symptoms, but since the AN grew from 0.8 mm. to 1 cm in the last year, it was suggested to me that I should do something about it. Itseems that surgery is better than radiation for someone who is not too old. I would like to talk to others who are in a similar situation. Thanks.
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I was 44 when I was treated and there are numerous folks who have had GK or CK on this board who were treated in their 30's and 40's. 51 is certainly not an age which is too young for radiosurgery if you want to consider that option.
Mark
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...I have a metallic taste that didn't occur until 1 month post-surgery...
I'm dealing with that right now; it's totally ruining food for me, nothing tastes right. I'm hoping it's due to the anti-inflammatory steroid (Dexamethasone) which I am no longer taking (finished the last one this AM).
Glad to hear you're doing well. I'm looking forward to the day when I can move my head without taking the whole house with it. ;D
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Hi eggroll:
You sound great!! The taste thing goes away - it just takes time. I got so used to chewing on my good side that I still find myself doing it!!
I hope the house stays put soon for you. Its just another of the unpleasant, temporary things we have to go through until our good side takes over.
Kathy
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Hey - I've still got the metallic taste & I'm almost 9 months out ( geez, time is flying by);
The metal taste seems to be getting worse for me,
I wonder if it's because of the facial paralysis....
Does it get worse before it gets better?
Or am I doomed with this ?
Food hardly has any taste anymore (except for vegetables);
I also don't have any appetite- I don't care much about eating anymore, which is a good thing (weight wise)
until I get a headache & think, 'I haven't eaten for about 12 hours, geuss I'm hungry......'
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Great News! Glad things are getting some what back to normal- or the new normal! Take care, Annie