Author Topic: Scared, and more scared  (Read 4150 times)

cld_1221

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Scared, and more scared
« on: April 25, 2015, 06:16:12 pm »
Hi Everyone, thank you for reading this and I apologize if this is long and I start whining too much, but frankly this seems like the only place I can get some support and advise.
Years ago when I was 27yrs old I started having lots of strange ear issues that would disappear as quickly as they would come. Didn't have any symptoms till I was about 30yrs old and that's when the symptoms started staying for a longer periods, two weeks instead of days. I went to numerous doctors and they dismissed it as anxiety, I started thinking I was becoming a hypochondriac. I finally started getting throbbing in my Right ear, like a hissing noise that would happen sometimes when I went to bed, this was about the same time my father passed away, so I thought it was depression. Then one day I woke up and everything sound like it had an echo and I had fullness in my ear. I didn't have insurance at the time, and frankly didn't have insurance for long pockets due to not working while working on my degree and then on my BS degree, so I decided to wait till I graduated and got a job with  health insurance. A year later I started to get ringing that would come and go and finally never left me alone. I was about 32 when I finally saw a doctor and after weeks of weird testing she said I either had Meiniers disease or AN, gave me prescription for a diuretic and told me live on a low salt diet. She also said AN are something that isn't serious, so just watched and waited (hoping it would just go away) , plus she scared me so bad about how "invasive" AN surgery is (this was 10yrs ago) so I'm hoping that the technology has improved dramatically, ran out of the office.

Fast forward 10 yrs and I've had ongoing issues, most recent is constant ringing getting so loud, tiredness, tingling on my tongue, unsteadiness, sudden dizzy spells, and what caused the recent MRI order was my history and this constant watering I started having in both my eyes 4 weeks ago, that will not go away.  I'm also noticing that I'm having memory issues, and seems like things that should be easy to do are more harder...is this common, so scared I'm starting to feel incompetent and stupid.  I'm a divorced mom of two wonderful children, recently separated from another partner of 6yrs (not sure if the stress made the tumor grow), currently living with my sister till I can find a job because the last job I quit because my dizzy spells were getting so bad, I was worried they were going to find me on the floor (10 hr standing job). So I'm basically feeling so low in my life right now, no job, I guess you can say homeless, spouse left me, I'm just so scared, and there is no one I can talk to. 

I need to get back to work to support my kids, but now with this new worsened ear issue, should I wait to attempt getting a new job?
 I had an interview last week but cancelled because my eyes were watering so bad it was hard to drive. 
Feeling complete devastation....highly stressed, worried about my children, what will happen if this is serious, how will take care of them, bills, etc, so many things. I just can't believe how quickly our lives can change at a drop of a hat.  Thanks for reading, I need advise, anyone in my same situation, single parent, alone and scared?  Sorry so long! :-[

milhaus

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Re: Scared, and more scared
« Reply #1 on: April 27, 2015, 08:13:05 am »
cld_1221:

I can certainly sympathize with what you are going through. My symptoms were chalked up to anxiety by probably at least 4 doctors for over a year. You said you had a recent MRI order. Has that been completed? It seems like a definitive diagnosis would really help you decide what to do.

I have never heard of watering eyes from an AN, but given enough time to grow almost any symptom is possible. The rest seems to fit.

Do you have a network of family and friends who can support you? If you get a definitive diagnosis, hopefully they will step up and help you. I know I couldn't have made it through without leaning on family and friends for support. Not that you should ever abuse this, but in my experience "brain tumor" is like a magic word that can get you almost anything. Don't be afraid to ask for help. If you are suffering from the symptoms of an AN, adjusting to a "new normal" especially after treatment is just a part of the experience. You will have to learn your new limitations. Many of them you will be able to overcome with time, but time is key.

I don't mean to present an overly bleak picture. As many on this forum like to say: "there is life after AN." You will make it through this with perseverance. I know what it feels like to feel so low, like a failure, or even a burden. I have persevered through it all for the ones I love, and you will too. The part that makes it so painful and so difficult is just time, and the unknown.

You want to fix it now. You need good health, a job, and stability now so you can provide for your children. It may be hard to see a way through it all now, while possibly facing a life changing diagnosis or surgery, then having to put your life back together afterward. I have been there too. Time will pass, and eventually what you can't see over the horizon will come to pass as well. Just persevere.

Let us know when you get a diagnosis, and keep your head up. Living with those symptoms before a diagnosis can be very stressful and depressing, I would know. I had myself convinced for the longest time that my dizziness and vertigo was all in my head, that I was just a serious hypochondriac and I needed to pull myself together, toughen up, and get over. I felt as low as can be when I was missing classes, and generally just unable to function normally in my life due to attacks of vertigo that were unexplained.

Once I was driving to class and had an attack of dizziness while on the road. I decided I absolutely could not make it to class, turned right around, and drove straight to a doctor's office. When I saw the doctor, she offered to up my dosage of antidepressants without making even the slightest effort to look into the possible causes of my dizziness and vertigo. That was crushing. It would be almost another year after that of doing poorly in classes, quitting my job, and generally just failing at life before I finally got a diagnosis. At that point my surgeons cleared their schedules to get me into surgery within weeks because my tumor was so large it was compressing my brain stem. Vindication was sweet, but it didn't make up for all the time I spent beating myself up wondering why I couldn't just pull myself together like a normal person.

Do don't do that to yourself. Be tough, but give yourself permission to trust your feelings as well. Believe in yourself, and persevere. The AN community is here for moral support. You may feel alone, but you have come to the right place to find others who know what you are going through. Apologies for the long-winded response, but I hope it helps.

Andrew
3.8 cm left side AN diagnosed June 2013

Drs. Thedinger and Milligan at St. Lukes Neurosurgery (Kansas City)

Translab July 2013
Translab round 2 March 2014

NYLady

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Re: Scared, and more scared
« Reply #2 on: April 27, 2015, 09:50:47 am »
Milhaus (Andrew)

I just read your post and had to comment on how much better you sound.  You really fought the good fight my friend.  It is wonderful to see how you now can pass along encouragement to someone else.  This is truly a wonderful place...especially when you can see someone uplifted by the support found here.  The ultimate recognitition of the success of this forum may never truly be known.  Just a word, or a cyber hug and some prayers can touch so many who never post.  The knowledge of people who have "walked the walk" and shared the hardships, means so much to all of us who travel this path.  With gratitude to all who have helped me and from whom I continue to draw encouragement, I extend very best wishes.  Andrew, keep on keeping on....good to hear from you.

NYL

Crazycat

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Re: Scared, and more scared
« Reply #3 on: May 07, 2015, 09:52:50 pm »
I don't know what to say...........
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

 


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