Author Topic: 39 and researching recent AN diagnosis  (Read 6807 times)

Derika

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39 and researching recent AN diagnosis
« on: June 28, 2013, 07:45:04 am »
Hello, My name is Derika and I am a single mother of 2 boys (18 & 15, 15 yr old lives with me). I have been researching on my options and trying to find someone with a similar situation as myself as far as symptoms etc. I was diagnosed over 3yrs ago with vertigo with an inner ear infection however was never given any tests after I had a lot of hearing loss and was very dizzy! I had it again about a yr later and was treated the same way. Last month I finally went to a out of town ENT in which he did intense testing which included a MRI. I was so dizzy I could not lay down let alone walk. Last week the MRI results came in and he diagnosed me with 3/4" about 2 cm AN and suggested I have it removed and set me up with a Dr. at U of M in Michigan. I have lost just over 50% of hearing in my right ear, severally dizzy, ringing in my rt ear and at lost what to do when my doctor says I need to stay home and rest as I only have my income and need to work. I have an apt with surgeon on July 11th and trying to get some sorta ground on what I should be prepared for on what he says. To wait and watch or to go ahead with surgery. If anyone has been in my situation and could tell me your story I would greatly appreciate it!! Thank You.

ewchisek

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Re: 39 and researching recent AN diagnosis
« Reply #1 on: June 28, 2013, 08:38:38 am »
Hi there. If you live in the Detroit area I would also recommend making an appointment at the Michigan Ear Institute.  It's always good to get a second opinion. I actually met with U of M, Michigan Ear and I sent my MRI scans to House clinic in California, which you can also choose to do, they will give you a free consult over the phone. In my case all the doctors recommended the same procedure, so at that point it's just a matter of who you feel the most comfortable with. Good luck in figuring out your treatment. And ask a lot of questions on here if you have them...I know I did and it really helped! EVERYONE on here is caring, compassionate and extremely helpful! Take care! Elizabeth

Derika

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Re: 39 and researching recent AN diagnosis
« Reply #2 on: June 28, 2013, 08:42:05 am »
Thanks! I have been on here reading before signing up and did have questions. I have not seen any posts of anyone around my age so was not sure if with my symptoms if anyone has went ahead with Waiting or Surgery. Was curious. I do hope to get a lot of answers to my questions and thank everyone ahead of time for reading and replying back.  :)

LakeErie

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Re: 39 and researching recent AN diagnosis
« Reply #3 on: June 28, 2013, 11:37:23 am »
You describe your vertigo as severe. The question seems to be, can you wait and watch with severe balance and orientation symptoms from your tumor? Only you can answer that.
You need professional input about your situation from physicians experienced in treating AN's before you can determine your best path. As already suggested in an earlier reply, getting input from more than one doctor, and regarding different treatment options, is advisable.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

NancyT

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Re: 39 and researching recent AN diagnosis
« Reply #4 on: June 28, 2013, 06:36:08 pm »
Hi Derika.  I'm glad you are doing significant research to help you with your decision.  Your medical team will help you also.  I am a bit older, 55, with a 2.5 cm AN removed in March, 2012.  I had 100% hearing, severe ringing in my ear, headaches, and vertigo.  I choose surgery based on feedback from my medical team to attempt to preserve my hearing and because I was advised that even though AN tumors are slow growing, I had several years (I hope) ahead of me and more damage was likely.   After surgery, I have 50% hearing loss, some facial paralysis, and still have vertigo.  Would I have had surgery had I known this?  I have to assume I did the right thing based on where my tumor was located and the feedback from the medical team.  I made the best decision with all the feedback from all the right people at the time.   Just research your medical team and assure they are the best.  Good luck to you and let us if you have questions and how you are doing.
2.0 x 2.4 cm AN
Middle Fossa @ University of Iowa Hospital March, 2012
50% hearing loss, some facial paralysis, some balance issues

str8testshot

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Re: 39 and researching recent AN diagnosis
« Reply #5 on: July 02, 2013, 01:25:42 pm »
Hi Derika, Im Chris 36 and primary breadwinner I have 3 kids 14, 9 and 3.  my tumor was very small but vertigo was severe and I just wanted it to be over so I found the most currently experienced AN team I could go to and had them take it out.  You said a few things I know do not help.  Laying down and resting too much will not help improve the vertigo, I personally did too much laying around pre surgery and the vertigo took over my life. Vestibular rehab does help and I have been told and experienced improvement the more I move the better these issues get,  challange yourself safely.  I quit driving due to vertigo and waited over a month after surg to drive again, but the more you exercise now the better your recovery can go no matter how you choose to proceed.  You should talk to your Dr about a steroid treatment, mine recovered my hearing and made me feel great and drive although temporarily and with side effect.  The more healthy you are (diet/Exercise) the better I think you will do.  This is a major event and you will need a support system, people to help you through recovery physically and psychologically, if you choose surgery you may feel an instant fix as I did and then realize it is a long road to a different better, for me the challenges were new but more manageable than vertigo and deafness,  I say I'm a lucky one because I do not have vertigo or deafness now!  no Matter what treatment you choose there are risks and challenges.  I firmly suggest getting many opinions of how to move forward I thinks the keys to success are choosing the best solution for you by listening to a lot of docs so you don't find many surprises and carry a good attitude, the better your attitude the more people want to help you.  That being said Brain Tumors are challenging and often cause you to miss work, so I would suggest a fund raiser to help the financial burdens.

best wishes and good luck!

 
Feb/2012- started spinning, March found 4 mm (L) AN, May tumor was 5mm, Reasearched over 100 articles, saw 11 Dr's, tried out sudden hearing loss, first experience of prednisone-hearing came back, opted for Middle Fossa at HEI Friedman/ Schwartz- no more spinning hearing is %100
 I am a lucky one :)

Derika

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Re: 39 and researching recent AN diagnosis
« Reply #6 on: July 02, 2013, 08:47:01 pm »
Thank you everyone for all your helpful advice and tips. I am awaiting for my apt and impatiently I may add. I am currently back on steroids as after being off them I seemed to be more dizzy than I was. Still dizzy but was not hanging on to the walls so much and could walk without falling. I do not want to do the watch and wait as this is the 3rd time I have had this issue but this time it is sticking around. Last few times it lasted a few weeks to a month. This was before my reg doc said it was a inner ear infection and no MRI was done until recently and Tumor was found. I am hopeful to get surgery so I am young enough to heal and hopeful to get back to work as my life is all on hold it seems. Dr orders to not work until further notice so I am researching and trying to keep busy best I can. I do have a few questions.... those of you that have went to U of M and had Dr Arts. Do you stay in the hospital? If so for how long usually? Also, I am not sure how big is considered a large tumor that would require surgery or not. My specialist says it needs to be removed and is about the size of an M&M... I am horrible at numbers. :) I am keeping a positive outlook and not being down about this all. Just the kind of person I am. I just am a very impatient person and want things done now but I know this takes time... time I do not want to wait for it to grow into more symptoms. So far no facial issues but all the rest.

Thanks Again!!!
Derika

str8testshot

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Re: 39 and researching recent AN diagnosis
« Reply #7 on: July 02, 2013, 09:50:46 pm »
If I remember correctly 2cm is the line between small and medium, have you tried motion sickness pills for the vertigo? generic is called meclizine are a lot cheaper that way. they helped me get off the floor ;)  but if you are looking at a computer that is more than I could handle without them.  they finaly move until you cant take it then take a pill, then repeat. I had a different surgeon but 1 night in ICU 3 more in hospital it was a couple weeks before i could do much more than walk around the block.  this is a process I am a year out and still getting better and I get in trouble when I push too hard. I went back to work at 6 weeks into a stressful job and ended up wishing I had waited cause I quit getting better mentally, I needed the check you know! I pushed to hard and started to fail at things, I was never a failure before so that smacked me into depression.  I have served in war zones and fought fires for a living, not someone who gets set back, so trust me when I say take it easy.  Good luck!   
Feb/2012- started spinning, March found 4 mm (L) AN, May tumor was 5mm, Reasearched over 100 articles, saw 11 Dr's, tried out sudden hearing loss, first experience of prednisone-hearing came back, opted for Middle Fossa at HEI Friedman/ Schwartz- no more spinning hearing is %100
 I am a lucky one :)

Derika

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Re: 39 and researching recent AN diagnosis
« Reply #8 on: July 03, 2013, 03:56:56 am »
I do Graphics and although fairly new to my job they are absolutely amazing! My employer and people I work with are so understanding and my job awaits me, it is a desk job and easy going, driving me crazy having to stay home... I have been up since 5am and I think went to bed at midnight Yikes! I see a nap in my future! :0)

I do notice when I over do it already as far as the dizzy part and yes I do have the medicine you mentioned. I never really notice anything with changes. I think I am expecting it to work magic and stop the dizzy or something. My dr says to keep taking it as it will help. I keep my sense of humor so far and hope it helps as far as being bummed about everything going on. Just everything all happened at once and now I found out to that my landlord wants to move into his house I live in. So this should be a fun adventure to say the least. :0/ I can't wait for the 11th to find out some answers from surgeon on what the plan is. Thanks for the input and hang in there... :) My brothers both served and now my son is about to go in as well and my brother in law is a fire fighter. I appreciate all you have done as well as others. You have to be strong for doing all that. Take care of yourself and I look forward to hearing more of your recovery.  8)

Chances3

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Re: 39 and researching recent AN diagnosis
« Reply #9 on: July 03, 2013, 11:43:42 am »
Hi Derika,

I was diagnosed with a small AN when I was 54.  I was having severe vertigo attacks, the full spin variety.  They were severe, long lasting and debilitating.  They became more frequent, totally unannounced, and unpredictable.  I didn't give Watch and Wait any thought, my tumor needed to be addressed.  I chose surgery because I wanted some finality to the little guy, but I was a good candidate for radiation.  I was fortunate, my hearing was preserved ( albeit somewhat muffled ), but I have no regrets, even though I still struggle with some balance issues, a feeling of a full head, and a ring, that can be quite nasty, depending on how I am feeling. 

What I have learned from sharing on this site, is that no tumor is alike, and no recovery is alike, whether you chose radiation or surgery.  My son works with a guy, whose daughter had a very large AN removed, she lost hearing on one side, but she recovered right away, and is back to living a normal life.  Your age is working in your favor.

Before you make any decisions, learn as much as you can, because you want to make the very best decision that works for you.  It has to be a decision that you will be comfortable with for the rest of your life.  Be very satisfied and happy with the medical team you chose.

I wish you all the best, and continue to interact with the people on this site, they are full of great information and understanding.

God Bless.
« Last Edit: July 03, 2013, 11:46:04 am by Chances3 »

Pam Fraley

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Re: 39 and researching recent AN diagnosis
« Reply #10 on: July 14, 2013, 08:02:42 pm »
Derika,

Just wondering how your appointment went at U of M.  I hope all went well and you were able to get some of your questions answered.


6mmx4mm a/n (left IAC)
8-9mm meningioma (right cavernous sinus)
Diagnosed 2/5/2013 MRI
Wait & Watch -  Dr. Arts, University of Michigan
MRI scheduled for 10/22/2013
No change, continue w&w, repeat MRI in 6months

Derika

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Re: 39 and researching recent AN diagnosis
« Reply #11 on: July 31, 2013, 05:35:49 am »
Hello! I have lots of tests coming up this fri and mon, both full days at U of M. As my surgery date gets closer, Aug 19th, I am getting more anxious and nervous just wanting it over and done with yet a bit scared on how it all goes and turns out. This week I have been so dizzy and exhausted!! All I want to do is sleep. Does anyone else feel tired? Wasn't sure if from the stress of having to move while dealing with this or it is a symptom from being so dizzy or something... I am currently still working but have days off for testing and unfortunately hurts the paychecks/bills which is becoming a big stresser. Ugh!

Echo

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Re: 39 and researching recent AN diagnosis
« Reply #12 on: August 01, 2013, 10:37:15 am »
Hi Derika,

I think you'll find exhaustion or a tired feeling is pretty common with many of us.  In my case (as with others) the good side of my brain is working overtime to compensate for the AN side. Some days it works harder than others depending on what I'm doing and I sure know it by the time I get through my day.  I have just started my vestibular rehab and was discussing the exhaustion with my therapist.  She is strongly recommending I pace myself better and try to get some rest each day even if it's only 10 or 15 minutes where I can sit quietly, feet up and eyes closed - thinking of nothing!  I can tell you I absolutely need more rest now than I did a year ago.  By 3 pm most days I'm struggling to get through the balance of my work day.  Weekends I no longer plan to do as much as I used to as I just can't manage it.  It's been hard to learn to slow down and to accept that I just can't keep up the way I always have.  I just keep telling myself this is a process and hopefully after my Gamma treatment in Sept. I'll start the long road back to a more energetic me!

Take care and pace yourself if you can.
Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital