ANA Discussion Forum
General Category => AN Issues => Topic started by: Nancy Drew on June 20, 2008, 08:58:12 pm
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Hi!
Some of you are getting to know me pretty well these days, and I am full of thoughts and questions. I don't know if many of you can relate, but I'll give it a try. My AN was found by accident, and it was totally mind boggling when I heard that I have a "brain tumor". I have bipolar disorder, and I has always said, "Watch me get my bipolar under control, and then I''ll get a brain tumor or something." That's what happened. Bummer. Was life looking pretty good for some of you, and then this whole AN stuff came up out of nowhere. I am still shocked about the whole thing. Just looking for some folks who also had their AN found by accident.
Nancy
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My AN wasn't exactly found by accident, but the symtoms came on pretty suddenly (ringing and hearing loss). Never in my wildest dreams did I suspect an AN or anything like it. Life was good for me prior to the AN. Life has surely changed since then. Then bammo.. I know exactly what you are talking about. I suspect that most of us do.
Brian
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Nancy -
I can relate to bad timing. I was diagnosed with my AN six months after my very long, expensive, nasty divorce. I was just getting myself and my children back on track emotionally and financially and things were looking up for all of us when I got the news. I went from feeling on top of the world and anxious to get my life back together to worrying about having treatment and wondering what my life would be like.
Thankfully everything turned out fine, but for a while there things were very stressful.
Jan
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Nancy~
I was 25, only been married 1 year and about to start a having kids (my lifelong dream of being a mother was finally about to start!) and BOOM! things changed overnight! However, I think that I have done a good job getting on with my life. It was a little roadblock, but things are great now - a little different than we'd planned, but good none the less!!
K
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Kaybo -
you have not only done a good job of getting on with your life - you have done an excellent job of getting on with your life :)
Jan
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Jan~
AAAWWWW...thanks...
K
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Nancy:
I think a lot of us can relate to this so thanks for bringing it up.
I had taken early retirement and within a year, my AN symptoms showed up, big-time. Not that we had planned to sail around the world or anything grandiose, but I had hoped to spend more time with my wife and doing things I liked to do, rather than spending it in doctor's offices and hospitals. O.K., I was fortunate that I didn't have to deal with work issues or raising small children, so I can't complain too loudly. Still, it was ironic that soon after I decided to retire, I'm hit with a serious health problem requiring brain surgery when, up until then, I had never had any serious health issues my entire adult life.
I'm thankful that I came through the whole ordeal in pretty good shape. Still, it was quite a shock and the timing was somewhat paradoxical. I suppose finding out you have a brain tumor when things are otherwise looking good is preferable to finding out you have a brain tumor when things are otherwise going badly. Of course, the constant is that finding out you have a brain tumor is always a 'bummer'.
Jim
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My children were in 5th and 7th grade and finally in the same middle school building as me so life was much easier. I was becoming an experienced but not burnt out science teacher and enjoying teaching my daughter's friends. I did have headaches for years, but then i started vomiting with the head pain some mornings. Then I quickly developed a hearing loss and tinnitus. I was always tired but more tired than usual. I started to get a little forgetful. I went to the doctor and said i just didn't feel well and maybe I had a sinus infection-could he give me antibiotics? He asked me to walk in his office and i stumbled and told him i am clumsy and always bump into doorframes. He sent me for an MRI with a suspicion I couldn't read and he didn't say and i didn't ask. I had the MRI done. An hour later, his nurse called and asked me to come in that day. Thant is when i knew it was serious and the craziness began. Why does it feel good to discuss this? Patti
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Patti -
it feels good to discuss this because you know that we can all relate :) IMO our common ground is one of the greatest things about the forum.
Jan
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I am trying to look at this as an interesting chapter in my life. After all, a book is not very interesting if it's all roses and sunshine, now is it? It sometimes takes the challenges to help us better appreciate the joys. I don't wish that to sound pompous or anything, just trying to keep it in perspective.
Tam, enjoying the beautiful weather, sunshine, and love of family and friends...
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It sometimes takes the challenges to help us better appreciate the joys.
Tam -
I don't think this sounds pompous at all. I think it's very insightful and very true. IMO it's a wonderful perspective.
Jan
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Hi everyone,
It is nice to get replies from this post because it makes me feel not so alone. Of course, it is only reasonalbe for all of us to be shocked when we find out about our ANs. Sometimes I read post from all of you, and I cry just from the relief that I know you can relate. I think a lot of people I've told about the AN really don't want to hear about it or talk about it because they don't know what to say. Kind of like when one loses a loved one and people tend to push away or avoid talking about the person"s loss. In all actually the loved one really wants to talk and be around people to discuss their loss. I have one really good friend who listens to me, and I appreciate her so much. But, I do think we have something in common that binds us together. Her baby was born with a rare syndrome that can cause tumors to grow on his liver. He has to have an ultrasound every three months until he is eight years old. Her baby is six months old so she can relate to the scary part about not knowing what is going to happen.
One thing I did do yesterday was to take a break from this AN forum. I had become addicted, and I felt like I had a mini vacation. I had time to regroup, and I am in a better place. I know that I have to take it one day at a time. Tomorrow I have my balance test, and then the next Monday I see the doc for the second opinion. I am trying to reduce my anxiety by doing things I enjoy. I am working in my yard which I love and have neglected since I found out about the growth. I have also decided not to discuss my AN with anyone except my good friend. I have decided to limit the discussion with my husband also because it makes him feel scared, I think. So, it is nice to have all of you here. You all are very much appreciated.
Nancy
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HI There,
I am a new postie, having just had surgery 20 days ago. I am just getting back on line after a week in hospital, and a few busy weeks settling back at home.
I am not sure if my AN diagnosis was an "accident" but i can tell you it was a real shocker!! The MRI was ordered to "rule out" an AN, after my ENT did hearing tests, checked my ears and could find no explanation for my decreased hearing (i had the classic drop off at high frequencies) and tinitus.
I am 39 and was in the process of trying to getting pregnant with baby number 2 when i found out i had a "tumor" (HOLY SH*T!) and should do something in the next 6 months (i.e. forget getting pregs). I found out at the end of January and it was a rough few months but I can see that you found your way here so you will probably find that in good time, the reality will set in and you will find that will this really sucks, it is not the end of the world and you will get past it.
I had no intention of surgery after reading about the risks of surgery and some stories that people who had been through it. But in time, with more information that was relevant to ME, i ended up going this way and now here i am, a "postie". I am facing many of the same issues as lots of people here have, and to honest, it's not so bad because they shared their experiences and concern with me everyday and i came to know that I could do this.
It seems your tumor is small, so that is good news. This key, not that you have a small tumor, but there is good news. You already know it is benign, this is also good news. So an important thing to know is that even in the darkest days, there is some good news, some silver lining, if you look (hard sometimes!) and keep talking. I actually kept my diagnosis a secret from many of my closest friends and family (i was emailing best friends the day before surgery!). It was just my way.
I wish you peace in dealing with all that you will face, and hope that you will come back here when it is all over (ok, is it ever "over"? it is a journey really, not a destination) and share like the good people you find here.
Best wishes, hand in there, smile big.
Trish from Toronto Canada
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Nancy,
Although I knew something was wrong with my hearing, I certainly wasn't expecting to be diagnosed with a brain tumor! I know that it's never a good time to find out about this, but in some ways I'm glad it happened when it did. We had just moved to be closer to my daughter and grandkids. So even though we don't have many friends here we have family that can help out. I know that will be important in the weeks to come.
Like you, I've taken a little break from this forum. Even though I've only posted a few times I can spend way too many hours reading other peoples posts. In one way it's very comforting to know that I'm not the only one going through this, but in other ways it stresses me out.
Rosalie
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Hi Rosalie,
It is ok to take a break. Sometimes I think it is good for your mental health. I hope your surgery goes well. I'll be thinking of you. Hang in there.
Nancy
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was in the process of trying to getting pregnant with baby number 2 when i found out
Sorry, Trish, ROFLMAO, the mind picture this gives me...thanks for starting my day with a huge belly laugh! ;D Love it.
Nancy, it is a shock to find out. It knocked me for a loop. For years they told me I don't have one, and now they tell me I DO????? After all these years of doctors assuming I am some kind of hysterical woman, they actually DID find something wrong? Well, it was satisfying, actually. Doctors blew me off for YEARS. Can't tell you quite what that is like. VINDICATION is what I felt, I think; I wanted to go back to the ten previous docs and rub their arrogant noses in my diagnosis.
You are going to be OK, really.
My diagnosis was given to me over my cell phone while I was driving down the freeway, and the doctor was talking to me on HIS cell phone, driving down another freeway. It was nuts. I pulled off into a shopping mall and sat there trying to absorb it.
I'm still trying to....and it is several years later. Apparently it's a process....but life does, indeed, go on.
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I can totally relate to the shock of it all - I had sudden severe hearing loss (immediate) while grocery shopping with my son at Christmas time 2006. I felt my ear close up and this horrible closed in, vacuum seal took effect - - I ignored it thinking it was an infection - and was even given drops for it - - but the hearing never came back - I too was given an MRI to 'rule' out' an AN - and then bammo there it was ...... when I went to the ENT for the results it had been a couple of weeks from the MRI - so I thought it would be nothing - I took no one to the follow-up appointment with me and BOOM - I was told I had a brain tumor!!!! I have NEVER had a panic attack - but I sure did that day.
I have two young boys and I suddenly saw my mortality and it scared the crap right out of me!!!!! I was addicted to this Board as well - the people here are a WONDERFUL support - but I learned all I could about this and - 'yes, it is scary' - but it is also BENIGN and we have to all be thankful for that - I too had to take a break .... kind of like 'outta site outta mind' - would I wish this on anyone - NO! I am one of the one's still anxiously awaiting my surgery date - - so for now I want to enjoy the summer, my kids and 'try' not to worry about it - - my hubby has an awesome attitude about things like this and basically says we are all dealt different hands in life and we just need to know how to play them ..... we can either be optimistic and accept and learn all we can - or we can choose to crawl in a corner ........ I am scared of the outcome - - but at the same time am thankful ...... that this is something that can be removed and is not terminal.
...... and - sorry to go on ..... things do happen for a reason (ie. not hearing of my surgery date yet) - - my husband has been suffering for a couple of years with numbness and pain in his hands and forearms - he has to have his first carpel tunnel surgery on the 3rd of July and then the second arm a couple of weeks after that - so there is no way we could both be 'down' a the same time - especially with an 8 and 4 year old ........ we joked that this summer on the beach I would be walking around wearing a turban and he oven mitts :)
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Denise -
not a nice diagnosis story :( but I'm glad to see you posting. It's been a while.
I was going to ask if you had a date yet, but I see you don't. I also forgot that the game plan was for your husband to have his surgeries first.
Hope everything goes well for him and that his surgeries solve his pain and numbness issues.
Please let us know how things turn out for him.
Jan
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Yes, it is like a punch in the stomach being diagnosed.
6 years ago, i finished a masters degree in music, found a job working with great people and students, in a town/state where my wife and I wanted to raise our then 2 year old daughter.
And then.....wham! I had headache issues that were unresolved by sinus medicine. So, my doctor ordered a CT scan.
After the scan, the radiologist called me into his office.
I knew that I was in trouble when he started by saying: "Let me start by showning you a normal brain. "
I sent my films to Barrow Neurosurgical Associates and House Ear Clinic. Both gave the same advice: Learn sign language and learn a new profession because you will be deaf.
And they were right.
Yes, we can all relate. AN diagnosis is life-altering. It forces one to evaluate their life and priorities. It helps to distill these things.
Yes, diagnosis is tough. And yes, you can get through it. Please let me know if I can help.
Jeff
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Denise:
We can certainly sympathize with your emotions upon receiving your diagnosis and even now, as you await a surgery date.
The initial diagnosis is always somewhat scary but I admire your courage in facing the future and, to be honest, I think your husband's relatively sanguine attitude toward life and it's problems is probably the most effective approach to take. Your clear realization that an AN is not a death sentence is also something we tend to ignore when faced with the possible negative ramifications surgery may bring. However, fear and worry won't alter the outcome of your surgery so I would continue your sensible plan to enjoy your summer (don't simply try - do it) and will also offer my best wishes for your husband's surgery, which I'm sure will be successful. My wife had the same surgery about a decade ago and had no complications, so I'm sure your husband will do just fine. :)
Jim
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An AN diagnosis is probably a surprise for most of us. I don't know who said it, but I like the quote, "Life is what happens while you're planning something else."
Regards,
Rob