ANA Discussion Forum
Archive => Archives => Topic started by: bob.e on March 02, 2006, 05:00:45 pm
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Diagnosed Dec '99. Two part AN or 9th crainial schwannoma. Doing great with no growth, no treatment, no problems.
I know that wait and watch isn't good for everyone and has certain risks. Just posting this for general info. Good luck everyone!
P.S. Sorry about the double post.
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Wish I had waited and watched. My tumor was only 7 mm, very small. I only have dizziness all the time and funny taste occasionally now but it's more than I had anticipated. I didn't have much input before I had surgery in April 2006. Family and friends urged me to "get it out."
Hope you keep up the good work.
Dee from Michigan
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wow Bob!!!! Sounds like so far, so good! Hang in there and sending wishes that "head booger" grows no further!
Phyl
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thats amazing, good for you.
Im newly diagnosed, 8mm x 3mm, and im trying to decide what to do.
Im 30 years old.
How old are you and how big was your AN on diagnosis ?
How big now ?
Do you live with any symptoms ?
Sorry for all the questions but your story has great interest for me.
:)
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Encouraging news, thank you! I have been advised to watch and wait with 9.5mm; however, I am experiencing significant symtoms. I am wondering if you have symtoms such as Tinnitus, ear pressure, feeling of fullness, headache, neck pain, imbalance and if you have received any kind of treatment of symtoms during your watch and wait?
Thanks!
Bev
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Bev, mine is 8mm.
I have tinnitus, ear fullness, headache on my AN side and the other side, neck pain, hearing loss and once in a while balance problems.
Im meeting with the neuroptoligist on Monday, i guess he will suggest to me at that point what to do.
Im wondering if with all these symptoms he will suggest to wait and see, or do they just suggest that for patients who have hardly any symptoms.
Bev what does your doc say about your symptoms ?
If you dont mind me asking , how old are you ? Im 30.
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Im wondering if with all these symptoms he will suggest to wait and see, or do they just suggest that for patients who have hardly any symptoms.
I was diagnosed in June 2005 after presenting with fullness, tinnitus, almost complete hearing loss, and dizziness/balance problems. Even with all that, I was advised by the neurotologist to take the watch-and-wait approach with repeat MRIs every 6 months to monitor any growth. At the time, he felt that the risks of surgery were much more than the risks of waiting and I agreed.
One year later, with my second follow-up MRI, we found the "head booger" was growing faster than most (almost 5mm in a year) and was starting to encroach on my brain stem - thus the plan for surgery this fall. But, in the end, you're the one that has to be comfortable with your decision after weighing all the risks and benefits of all options, knowing how they relate to your life.
I'm 35, by the way! ;-)
Katie
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Hi Bob.e,
I think that's great that you've had six years of watching and waiting with your An.
I was wondering about what you meant re two part An and also I find it interesting that you said yours was on 9th nerve as i think that's the hypoglossal nerve??? For some reason this strikes a chord in me.... no idea why.
Thanks for any further explantions on that.
Best wishes,
Windsong
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No growth and no symtoms that I can tell. I was diagnosed in Dec 1999 when checking for cause of migraines. Two part schwannoma with one part .8 cm and the other oblong at about 1.2 cm. It's mostly associated with the vagus nerve (9th cranial). Probably have another MRI later this year. Most of the time I forget this even happened and wish I hadn't told anyone. Never did tell my family.
I'm pretty careful about getting plenty of exercise and eating right. I have a specific diet and routine. Not saying that has anything to to do with my luck, just mentioning it. I've been flamed before for mentioning my approach so I don't disclose it anymore. To each their own.
Considering what could have happened I am grateful for everyday I wake up healthy. It is a gift.
Good luck everyone!
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Bob are you kyaking in your pic?
WOW!
We will not tolerate flaming!
Yes, everyday is a gift...thanks for popping in and sharing with us!
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Bob:
I love hearing wait and watch stories. It means they can and do grow slow.
Best of luck to you!!
Kathy
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Thanks Bob for sharing your watch and wait story. I was diagnosed in Dec. 2005 with a very small AN (4mmx5mm), and my six month MRI showed no growth. I have no symptoms except for problems with background noise. It is encouraging to hear that you have been able to do the watch and wait option with success. I hope the same is true for me. I have my next MRI in May 2007, and I hope to follow in your footsteps. It gives me a lot of hope to hear your story. Best wishes. Nancy
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No flamers here! At least not anymore. Congrats of having the guts to wait it out! Kayaking is almost as fun as sailing! Now no one flame me on that'n!
Capt Deb 8)
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Bob, being a "wait & watcher" for 16 years (knowing the name of AN for 9 years plus a prior 7 years of "obvious symptoms), I can relate to what you write. I feel grateful someone started a topic for the wait & watch patients. There are more of us that meet the eyes. But this is still an oddity.
In the old ANAUSA there was one who had been waiting 17 years.That was in 2002, but I knew about her since 97. And there was 2 more, plus I. I often felt out of place among the patients who had treatment.
Do you think we could keep this topic open for W&W to join.?
I also try to minimize my tumor with a reasonable diet and also use my symptoms to learn what is affecting the AN and in what way.
It is now such a long story, I will not pour it in one post, I have try this before. No response.
My success in using myself as a gunny pig is paying off in spite of the continuous growing of the tumor and the discovery at the beginning of 2 more schwannomas, one very close to the AN and one in the kidney area. All seem to have started at the same time. I have been very successful with the one in the kidney though surgical removal would be easy there.
Diet is very important, and drinking mostly water is primordial, at least to me.
Thanks for your post.
antoinette
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I am a 1 year watch and waiter. Last summer I had just had a completely different major surgury and was not ready for another. This year no growth and as my doctor put it "we don't treat a rock". He also mentioned he has some patients going back a few years to the beginning of his practice that have had no tumor growth after diagnossis and no treatment. I am leaning towards radiation for when I do have to make a decision on treatment but for now I have till next summer's MRI free. Any change in symptoms would of course warrent checking as well but so far so good. And ski season is just around the corner!
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Does anyone find your Doctors pushing to "get it out of there" even if it isn't growing?
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In general, yes. They want to "act" when it is still small. veteran doctors are more patient and carefull, they know that there is no other way "out" if we want it out. But there are other ways to treat, though we do not know for sure at what cost, it is worth investigating. I wish there was true statistics about the radiaation outcomes.
In my case I am glad my surgeon did not want to operate until the symptoms from having an AN would be worse than the results of even a successfull surgery. i still have it, it looks as if my body manage to compensate and the dizziness is a fact of life never to be change, surgery, radiation or wait & watch. The other symptoms are under control with diet and biofeedback.
I am glad, though I was sometimes scared and feeling abandoned.
antoinette
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Scott - my doctors were completely happy leaving it alone for now thank goodness! ;D
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my doctor is in no rush to remove it.
He told me my AN is small, and because my symptoms are at a minimum that removing could actually make things worse for me.
He did two years of study at Harvard on ANs and he told me that sometimes they dont grow at all, even though this doesnt occur very often, he wants to make sure that mine is actually growing.
He has already suggested GK for me, he feels it would be the best in my case but has told me he will definitly refer me to a neurosurgeon for consultation, he said no matter what he believes he thinks the consultation is necessary and important for me. I was really leaning towards getting it out of there but i trust his judgement, i guess we will have to wait and see.
So no, i dont think all doctors suggest to get it out right away. I think it would depend on their experience and what they have seen.
T ;)
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I have also been diagnosed with a 5mm AN in March and my doctors also insisted on wait and watch. I have tinnitus, sometimes imbalance problem, specially when I am tired but as antoinette said, it has become part of my life in past 2years now. However, just thought of sharing, my first symptom was in 2004 when I lost complete balance and was in bed for 7days. It took me 2 weeks to stand again and start normal life. At that time, it was diagnosed as viral attack (labryntithitis) and the doctor prescribed me 7 up/sprite or any lime+soda drink. I still find few sips of 7up or any soda drink very helpful, when I get dizzy.
antoinette and Bev will you please let us know what kind of diet you both are having. I understand everyperson is different, but as far as diet is concerned their is no harm is trying.
AN
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Just seems like my Dr. keeps saying, we'll just watch it for now, but you're only 30 so it's very likely it'll grow again in your lifetime. That being sais, we may as well take care of it now.
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Hello AN: I am not on any special diet; however, the Tinnitus doc I am seeing has had me journaling everything that I put in my mouth for the past two weeks. The journal also includes medications, exercise,hearing/communication observations and experiences, degree of tinnitus 1-5; stress 1-5; 3 positive observations/experiences. I see her for the second time today and will have more information to share. All of this will lead to a recommendation on treatment of the Tinnitus. I have not noticed any effect of the above on any of my symtoms so far. Let me know if you have other specific questons.
Bev
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These waiting and watching discussions are great. I hope I'm as fortunate as some of you. I only recently decided (this month) to wait and watch and will go for my 6-month MRI in October. Not all neurosurgeons want to cut. Mine is one that is a believer in CK and only if I have to do something, so I'm stickin' with him!
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Sorry if this is a dumb question, but what is flaming? I would really like to know so hope someone answers. I am new to this whole AN business, and I am in wait and watch mode. I'm ok with this for now since I don't have any symptoms that bother me. My doctor recommended wait and watch, but he told me about the options that are available. Obviously I think about the AN from time to time since I do check this board although not very often. So I am not in complete denial. It is always in the back of my mind--how could it not be. Also like to hear wait and watch stories so keep it up all of you and best of luck to everyone no matter what approach you take. Support is always helpful. Thanks. Nancy
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Hi Nancy, no question is every dumb. "Flaming" is an internet term used for when others don't tend to agree with what you say and make their emotions/comments known in a very....oh, how should we say.... "colorful" way. Hope that helps.
Phyl