Author Topic: Just Diagnosed - Managing Symptoms  (Read 1324 times)

KristenWS

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Just Diagnosed - Managing Symptoms
« on: July 17, 2018, 08:28:38 am »
Greetings - I am a new member to this group and was recently diagnosed with a 1cm AN.  I was initially diagnosed with vertigo and then Labrynthitis by my GP who then sent me to an ENT who ordered the MRI where the AN was found.  Like I am sure all of you, I never thought in a million years that this would be the outcome. I am scared and so very worried.  I will add that I have an anxiety disorder, which does not help me manage the worry and subsequent symptoms that go along with that - kind of a catch 22 because the symptoms of anxiety mirror the symptoms of AN, at least for me.

I am not to the stage yet where I will be making decisions about treatment as I have my first otologist appointment later this week so trying to take things one day at a time.  What I am struggling with is the symptoms (dizzy, loss of balance, hearing loss, fatigue) and feel like if I could manage these symptoms, I will be able to face this next stage of making treatment decisions more easily.

As I am sure like many of you, I feel like my life has been stripped away. My symptoms were so severe in the beginning I had to use a walker to walk and could not leave the bed. 19 days on prednisone has helped, I am able to work (work from home) but I cannot drive, walking like I'm drunk/unsteady and ear feels like it is clogged. With the prednisone, I feel like the hearing has improved a bit.  I have had to quit my beloved softball league, cannot work out, music and going to concerts are my passion (probably 5-10 shows a year) and I love to dance.  Basically, I work and I sit.  At least I can now read, which is also one of my passions.  I am very depressed because of all this and it is very demoralizing.  I am also so anxious about other symptoms arising -- any little twitch in my face makes me feel like paralysis is going to hit.  On top of that, we are supposed to be going on vacation to a lake cabin at the end of the month where we spend 95 percent of our time on a boat (!), not to mention, I would love to have a beer while on vacation but I guess having the beer is the least of my worries. 

I am very blessed and grateful to have a full life with many passions and I don't mean to whine.  I feel like I will be able to face this next stage better if I felt more myself but no one seems to be able to help with the symptoms. I am told to accept the timeline.  I feel like once I am off the prednisone, the severe symptoms are going to come back and that in itself makes me anxious, which causes all those dizzy feelings etc.  Can anyone suggest ways to decrease symptoms, tips, questions to ask the doctor.  It has been a month that I have been living like this and it is really wearing me down and taking a toll on my family as well (husband has to take time off work to drive me everywhere etc).  From reading some of the boards, I am fearful that that this is the way the rest of my life if going to be.  Life can sure turn on a dime can't it.  (51 year old female, 1 teenage daughter, husband that is trying to hang in there, Boston, MA).  Thanks for any guidance you can provide and I hope all are doing ok.
Symptoms started 6/24/18
First MRI 7/12/18, 1cm AN

mac84

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Re: Just Diagnosed - Managing Symptoms
« Reply #1 on: July 17, 2018, 09:28:50 am »
Kristen, welcome to the club! 

I have an AN that is 1.4cm and have been on the watch and wait for around 4 yrs. My balance isn't great but my right side has taken over and I suspect yours will too. Once the prednisone has done it's job you'll start getting back to more of a normal feel I think. Your anxiety is likely magnifying things and making it a little worse. Do what you can to handle that part and let the brain do what it needs to to compensate for the attack on the balance nerve. You'll have good days and bad days and will learn what triggers your wonkyness. But you'll do fine!  Read all you can and accept it for what it is and you'll learn to live with it and keep on keeping on!

Good luck! 
Cary
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth but hearing deteriorating - MRI 2 yrs
Fitted with Resound Linx 3D 5/18

KristenWS

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Re: Just Diagnosed - Managing Symptoms
« Reply #2 on: July 17, 2018, 10:21:39 am »
Oh Cary, thank you for your note. I am crying just reading this and truly am still in denial that this is happening and the course of my life is changing forever, overnight. 

Thank you so much for your kind words.  Today is a bad day where the ringing is significant and yes, that makes my anxiety spiral.  Do I feel a twitch on my face, am I going to wake up with facial paralysis, will I ever be able to walk with out looking like I have been drinking.  I keep thinking about how we are having to relearn everything, almost like the movie "Regarding Henry."  Also, the toll this is taking on my family is significant, which also makes me anxious.

I am really looking forward to seeing the otologist this week to see if they can assist.  This all started on June 25th, diagnosed on July 13 so I guess not that long but it is almost like if I had some notice, "This will be your last day of feeling normal and then you will have to dig in," I could handle it better. And would also be able to handle the next phase if I felt more like myself. 

Life can turn on a dime, can't it?  Thank you again for your very positive message and that there can be hope.  All the best to you as well.

Symptoms started 6/24/18
First MRI 7/12/18, 1cm AN

notaclone13

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Re: Just Diagnosed - Managing Symptoms
« Reply #3 on: July 17, 2018, 11:17:23 am »
Hi Kristen,
What Cary said is very true. It is perfectly normal to be freaked out post diagnosis, but as you get to know the nice people on the forum and learn about their experiences and coping mechanisms you will see you are not alone. I sent you a PM regarding some things I have found helpful. Check the Watch and Wait threads as they provide a wealth of advice and information.

Cheers,

M.A.

KristenWS

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Re: Just Diagnosed - Managing Symptoms
« Reply #4 on: July 17, 2018, 12:07:44 pm »
I received your note MA, responded and can't thank you enough. 

As I mentioned, I think I am past denial but am in the bit of the pity (why me, why did this happen) phase.  Also, blown away by the fact that it hits so suddenly, is so life altering and there is no cure, which has really tapped into me being very sad. 

Your notes have given me hope and I will continue to participate in this lovely forum.

Thanks so very much!
Symptoms started 6/24/18
First MRI 7/12/18, 1cm AN

mac84

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Re: Just Diagnosed - Managing Symptoms
« Reply #5 on: July 17, 2018, 03:55:15 pm »
There WILL be days when you'll forget all about it. Promise!

 ;D
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth but hearing deteriorating - MRI 2 yrs
Fitted with Resound Linx 3D 5/18

notaclone13

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Re: Just Diagnosed - Managing Symptoms
« Reply #6 on: July 17, 2018, 04:54:02 pm »
I think you will feel better after you visit the otologist this week.  Unfortunately, I found out about my AN when I picked up a copy of my MRI to bring to my doctor's appt. scheduled for the next day.  I read the path report myself and thoroughly freaked out. I don't even remember driving home.  Luckily, when I visited the specialist the next day his positive attitude very much put me at ease. He reminded me that it was a benign tumor, would likely grow slowly and was still small and thus treatable by Cyberknife.  Once I was out of my "panic mode" I began to feel better and am quite sure you will too.  Luckily you are in Boston and near several fantastic doctors and treatment centers for acoustic neuromas.  Should you need treatment you have good options.  Please check back after your appointment and let us know how it went.

Gtmochi

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Re: Just Diagnosed - Managing Symptoms
« Reply #7 on: July 17, 2018, 05:07:33 pm »
Hi KristenWS,

Ooh - the diagnosis is like a punch in the stomach, right? Or getting hit by a truck. Or something violent and random for sure. But, like MA and mac84 have said, it will get better! And there will be days when you forget all about it!

For a few days after diagnosis I was pretty inconsolable. I found out on a Friday morning from my then ENT and had to suffer through the weekend without speaking to a specialist (actually, I fully looked at my own MRI the Thursday night before, and knew what I saw was an AN, but was praying that maybe as a non-medical person I was wrong!). There was only Google for comfort. I was literally crying hysterically in my husband’s arms (dear man!) all weekend long. That Monday I had a doctor’s appointment, then another that Tuesday - that made a HUGE difference in my mindset. I am sure it will help you too! After that, I entered a phase of  alternately mourning and fearing the future. I really thought I’d never feel like a normal human again. But I did! And so will you!

Previous to diagnosis, I only had tinnitus, slight facial sensation, and slight hearing loss (I was unaware until tested). The moment I found out I had an AN, it was like a symptom bomb went off. During that first month or so, my symptoms were totally heightened, and I gave myself tension headaches from worrying all the time and not sleeping well because I was worried.  But once I settled, so did the symptoms.  What really got me through (and continues to help me on days when I am just not feeling it) is to go through the motions of being normal.  I tell myself to just keep swimming. The more I force myself to move and go and do and fight, the better I feel. But man, is it hard. I am sorry you are having this experience.

Know that all will be well! You will find that once you get over the shock and sadness and begin finding your treatment path, you will be just the same as before. One of the doctors I met with, Dr. Slattery at the House Clinic, told me that for someone who has a choice (surgery or radiation or watch and wait) the most important thing is to choose one that your heart is happy with, because then you can move forward with a sense of peace. And he was right...though I didn't believe him at the time!

Jessica
« Last Edit: July 17, 2018, 05:21:06 pm by Gtmochi »
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

KristenWS

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Re: Just Diagnosed - Managing Symptoms
« Reply #8 on: July 17, 2018, 06:54:56 pm »
To you all, I cannot thank you enough for taking the time out to write back to me, share your experiences and to help allieviate some of my anxiety.  I had a terrible day today and spent most of the night hysterically crying with my husband who is holding up the best that he can when also trying to deal with his own emotions and experience.  I just still can't believe that this has happened and just want someone to "fix" me so like you say, the first step is to get with the doctors and get a plan.  Hard to wrap your head around how significantly your life is going to change and that you will never feel like you once were but you have all given me hope and for that I cannot thank you enough.  I will be sure to report back after the appointment on Thursday and again, thank you.  It is a comfort knowing I am not alone. 
Symptoms started 6/24/18
First MRI 7/12/18, 1cm AN

CHD63

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Re: Just Diagnosed - Managing Symptoms
« Reply #9 on: July 18, 2018, 05:38:47 am »
Hi KristenWS and welcome to this forum, where you already know you can find much support.

To this day, I can still remember in great detail my extreme fear and anxiety upon hearing the unexpected diagnosis of an acoustic neuroma.  Within a couple of days, I moved into the frantic research phase and talked with a number of AN patients before making my decision on treatment.  If you have not already done so, please contact the ANA and send for the free informational package.  It contains a wealth of accurate information, which should be reassuring for you.

It is so important to talk and/or have opinions of medical professionals with vast experience in treating acoustic neuroma.  Fortunately you live in an area where you can find experienced AN physicians to get more than one opinion.

As for size, your AN is still in the small category, but the specific location is equally important.  Many large tumors cause relatively few symptoms, while small ones can cause debilitating symptoms.  A good AN doctor will help you sort out whether it is advisable to wait and watch or not.

I would urge you to be very careful not to dwell on the worst case scenarios.  Many of us have had treatment and then gone on with our lives.  Some of us have had to make adjustments related to hearing loss, but there are so many options for that, as well.

Take a deep breath and try to relax while you walk through this process.  We are here for you.  Best wishes.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

KristenWS

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Re: Just Diagnosed - Managing Symptoms
« Reply #10 on: July 18, 2018, 10:26:36 am »
Again, I cannot thank you all enough for taking the time to write to me and to share your experiences.  I do need to calm down - the symptoms don't help with my existing anxiety disorder because every little twitch or dizzy spell sends me spiraling into the worst case scenario.  Also, the anxiety over what is going on in my life (supposed to take teen daughter to first Taylor Swift concert next week and then go on a lake vacation where 98 percent of our time is spent on a boat of swimming), which should not be the priority now but makes me anxious on how I will handle and effects my family.

I also agree that I will hopefully feel better once I see the first otologist tomorrow.  I feel like if I can manage these symptoms and feel like myself again, I can handle the rest better (3.5 weeks of symptoms, first week severe couldn't leave bed, next two a bit better).  I am going to write for the ANA packet now.

Can any of you share the treatment plans you pursued, success rates and how you feel?  I truly can't thank you all enough.  This group is already a blessing.
Symptoms started 6/24/18
First MRI 7/12/18, 1cm AN

mac84

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Re: Just Diagnosed - Managing Symptoms
« Reply #11 on: July 18, 2018, 10:35:28 am »
2 baby aspirin each morning along with regular exercise. I run 20 miles per week.......

I realize that it's not possible for everyone to run or bike..but do what you can to get the heart rate up!
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth but hearing deteriorating - MRI 2 yrs
Fitted with Resound Linx 3D 5/18

kestes

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Re: Just Diagnosed - Managing Symptoms
« Reply #12 on: July 18, 2018, 10:53:56 am »
 I take 2 baby aspirin 2 times a day morn and evening as well.  Some studies are showing aspirin helps stopping the growth and they are just entering clinical trials to see if that holds true.   I run about 10 miles per week.  Yes I do get dizzy and wonky headed but I just focus straight ahead and run slow! 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina