Author Topic: Introducing Myself, just diagnosed  (Read 19633 times)

Nimrod

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Re: Introducing Myself, just diagnosed
« Reply #15 on: March 20, 2012, 07:15:41 pm »
BeckyMax
 I too have just been diagnoised with AN in the left side. I am a avid diver & with the water warming have a trip planned. Unles the Dr on my 3/28 visit says otherwise I'll let yo know.
 
Don't let this interupt your dreams!!
 
I'm 54 and in 08 had a hell of cancer scare. I survived that and plan a long & health retirement in the future.
Prayers be with you and keep your faith.
 Craig

BeckyMax

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Re: Introducing Myself, just diagnosed
« Reply #16 on: March 26, 2012, 05:57:39 pm »
Craig, you posted this 2 days after my dive.  I did it!!!!  So glad I did, I replied on your thread as well.

Becky
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

millie

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Re: Introducing Myself, just diagnosed
« Reply #17 on: April 04, 2012, 08:28:39 am »
I identify with many of your feelings and concerns.  Like you, I am staying  physically active and it gets my mind off things.  I too am watch and wait-I had two opinions,and both were to watch and wait until August MRI.  I do have an ABA April 18th and I wonder if that will tell us more about whether to watch and wait.  Only one  of the ENT's ordered that, though.
Carry on!  Millie

Tumbleweed

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Re: Introducing Myself, just diagnosed
« Reply #18 on: April 04, 2012, 11:34:10 pm »
I do have an ABA April 18th and I wonder if that will tell us more about whether to watch and wait.

Millie, did you mean an ABR (auditory brainstem response) test? If so, that will tell you how well your hearing nerve is conducting impulses to your brain stem. Knowing that, your doctor will have a better idea of which treatment would best preserve your hearing (if you still have useful hearing on your AN side). Typically, people who have poor ABR results will lose all their hearing during surgical resection. If preserving your hearing is of primary concern to you, an ABR test is all the more important.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

millie

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Re: Introducing Myself, just diagnosed
« Reply #19 on: April 23, 2012, 06:35:39 am »
Yes, TW...I had an ABR on April 18th, but I have not yet gotten the results.  The doctor who gave me the ABR said my tense muscles were sending electrical impulses that interfered with the test and that probably happened to me previously at Mt. Sinai when I was told the machines weren't working properly due to building consruction. (They are very sensitive.)
The same day my husband was found to need a laminectomy and spine surgery, for which he goes to Hospital for Special Surgery May 4.  Somewhere down the line,  he will have his aortic valve replaced.
No word yet on the ABR results.  I have been gardening like a mad woman which is good for me as it keeps my mind off things but now suspect I have poison ivy.  I am about to go to the therapist then take my mom (90) to her oncologist.  I am praying my wonderful son, college grad, layed off salesman, gets a job soon.   I have not been able to see my grandkids lately due to other appoitments-and they are the light of my life.
I am trying to stay positive.  I notice the ear ringing and fullness a lot, then, maybe when I am quiet, it seems not so bad.  I think I can deal with hearing loss since I seem to have it already.  Now I am worrying maybe I will get more bad news. What else can they tell me about my ear? However I did spend Sat at a women's retreat so as I said...I am trying to be positive and control those thoughts!
Sorry to vent but sometimes I get tired of all this "stuff." 
Hoping today is a good day-for us all...
...Mil

BeckyMax

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Re: Introducing Myself, just diagnosed
« Reply #20 on: April 23, 2012, 08:59:06 pm »
Millie, I can so relate to all that you are dealing with.....like reading my own post!  Be sure to post back you ABR results.

Becky
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

millie

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Re: Introducing Myself, just diagnosed
« Reply #21 on: May 11, 2012, 09:10:09 am »
BeckyMax and everyone:
I have not been on the forum until today May 11th because my husband, instead of spinal surgery, had a quadruple bypass and his aortic valve replaced.  Last night was my first night home and I am doing bills and trying to catch up.  I am going back to the hospital where he has been for ten days and he hasbeen moved out of intensive care and should be home newxt week.  For those with heart issues St. Francis in Roslyn L.I. is the place to go.
I am fried.
I have not gotten the results of the BRA hearing test so I called the doctor's office and asked to please be updated.  My blood test when I had the poison ivy revealed elevated liver enzymes but I don't know what to think about that; I have not had a glass of wine in almost two years.  Honestly I am so weary and afraid of talking to another doctor!
Sometimes my symptoms seem worse I think it is the stress and being tired.  Just wanted to explain why I have not been around.
Praying for us all...Millie

alabamajane

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Re: Introducing Myself, just diagnosed
« Reply #22 on: May 11, 2012, 11:15:18 am »
Wow Millie,, when it rains it pours huh???? Bless your heart,, and your husband,, I sure hope he is out of ICU and recovers without incident...

Elevated liver enzymes can be many things and they can change daily.. you may be referred to a gastroenterologist for futher testing,,just what you want I am sure,, but not always a "big deal',, but I am not a Dr either....I am sure you know stress can alter so much in our lives too... TRY to relax some and not worry about it until you find out there is anything going on...
Our prayers are with both of you.. Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

LizAN

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Re: Introducing Myself, just diagnosed
« Reply #23 on: May 13, 2012, 02:46:18 pm »
BeckyMax and everyone:
I have not been on the forum until today May 11th because my husband, instead of spinal surgery, had a quadruple bypass and his aortic valve replaced.  Last night was my first night home and I am doing bills and trying to catch up.  I am going back to the hospital where he has been for ten days and he hasbeen moved out of intensive care and should be home newxt week.  For those with heart issues St. Francis in Roslyn L.I. is the place to go.
I am fried.
I have not gotten the results of the BRA hearing test so I called the doctor's office and asked to please be updated.  My blood test when I had the poison ivy revealed elevated liver enzymes but I don't know what to think about that; I have not had a glass of wine in almost two years.  Honestly I am so weary and afraid of talking to another doctor!
Sometimes my symptoms seem worse I think it is the stress and being tired.  Just wanted to explain why I have not been around.
Praying for us all...Millie

Millie,

Sorry for all of your troubles.  I will keep you and your husband in my thoughts and prayers.

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

geexploitation

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Re: Introducing Myself, just diagnosed
« Reply #24 on: May 19, 2012, 10:04:14 am »
Hi Becky,

I'm sorry to hear about your diagnosis. Others have covered a bunch of topics here, but I want to chime in with an encouragement to keep living your life exactly the way you want to live it. IMO, there is NO reason you need to change your behavior because of this. Just keep tabs on your symptoms and monitor your tumor responsibly... these tumors, especially when small and not pressing against the brainstem or some other absolutely vital structure, pose exceedingly little danger to you.

My illustrative example: I was diagnosed with a very large/giant AN this year (avg diameter 3 cm, largest diameter 4 cm -- way bigger than yours). Obviously this has been there a long time. In retrospect, I started noticing a feeling of fullness in my ear 4 years ago when I was 30 years old, so this thing has been around since then and probably a very long time before that. I've not been limited in any way, in spite of the size of my tumor. So don't think that this tumor means you've got to stop doing the things you enjoy!

Sean
=========================
41 mm x 24 mm x 28 mm probable AN diagnosed 1/10/2012.
Surgically diagnosed 7/9/2012 as TRIGEMINAL schwannoma and removed via retrosigmoid at MGH in Boston, MA by Drs. Barker and McKenna.

BeckyMax

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Re: Introducing Myself, just diagnosed
« Reply #25 on: May 19, 2012, 05:09:37 pm »
Thanks, Sean, I've had many days of feeling sorry for myself, I'm done with that for now, my husband suffered a pulmonary embolism on Monday, could have died from it, my problem is so minimal compared to that.  As they say, it can always be worse, even with what we are going through with him we are reminded that others are in worse shape than we are, guess it took this for it to really mean something to us.

Becky
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

rondyone

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Re: Introducing Myself, just diagnosed
« Reply #26 on: May 21, 2012, 08:02:32 pm »
Thank you for the information.  I have also just recently been diagnosed with AN, after noticing marked loss of hearing in my left ear in January.  MRI in March and a visit to House in April.  On the watch and wait process until October when I have another MRI.  My neurosurgeon stated is was the size of a grain of rice.  Experienced some tinnitus, basically a drone sound with some clicking until May 3rd.  Now it is a raging river with many crickets and sonar pings in my head and next to no hearing in that ear.  Sleep is almost null.  Has anyone experienced such a drastic change so quickly? 

Tumbleweed

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Re: Introducing Myself, just diagnosed
« Reply #27 on: May 23, 2012, 11:50:40 am »
Rondyone, it's common for such sudden changes in hearing and tinnitus to occur. Hopefully you told your doctor about the changes and they prescribed steroids for you to try to regain your lost hearing. Taken more than 24 to 48 hours after the hearing loss occurred, however, steroids are a lot less likely to be effective. That said, before I was treated I had multiple bouts of sudden, partial hearing loss, and I always got back most (but usually not all) of the hearing lost during the most recent episode within a couple days, without steroid use. You too might recover some of your hearing spontaneously.

You should always tell your doctor about sudden changes such as you've experienced. They may be cause to seek treatment on an expedited basis (not because your life is in danger, but because it might save your hearing or other important cranial-nerve functions).

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

rondyone

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Re: Introducing Myself, just diagnosed
« Reply #28 on: May 23, 2012, 01:11:11 pm »
Thanks TW

Have an email into my MD - waiting for his reply.

millie

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Re: Introducing Myself, just diagnosed
« Reply #29 on: May 24, 2012, 10:56:50 am »
Hello everyone and Becky Max-
Becky- I can't believe your husband had a pulmonary embolism while you are trying to deal with your AN.  Thank God he is recovering.  As you may or may not know, my own husband, Tom, was diagnosed as needing a  sudden quadruple bypass and a new aortic valve while undergoing a catheterization (heart) to get cardiac clearance for spine surgery.  So he had open heart surgery May 3 at St. Francis in Roslyn, L.I. instead of spine surgery (scheduled for May 3rd) at Hospital for Special Surgery in Manhattan.
Yes, these life-threatening experiences only make us appreciate every day even more.  Tom could have had a heart attack at any time; his only sympton was tiredness and loss of appetite and lethargy-which he attributed to the spinal stenosis back pain.  He had no chest pain or shortness of breath but two arteries were completely clogged , a third was seventy per cent and I don't know what the fourth was.and his aortic valve was shot. So they shipped him to St. Francis after the catheterization at St. Catherine's.  St. FRancis is a noted heart hospital here on Long Island. I stayed at various hotels near the hospital until he got out of cardiac intensive care-about nine days.
He came home May 14th and so I have not been on line.  However he has been doing better every day.  The physical therapist has come three times and we go to various doctor tomorrow and next week.  Like you, I am considering us blessed now that the big crisis is over.  These events make us do so much soul searching.
As for our own ears and their issues,  I guess we are also blessed if all we have to deal with is hearing loss, ringing, and strange feelings in the head.  That feeling of pressure.  I did find, and maybe you did too, that at the end of a long day at the hospital- for example, surgery day, my ear was buzzing out of control and the pressure-feeling was relentless and I could not wait to get back to my hotel room to lie down at 8 oclock.  I think stress makes our symptoms worse.
 Tom is home now, thank God and progressing slowly but surely. I usually put my feet up for an hour from about 3:30 to $:30 and it seems to help.  I notice that when I arise in the a.m., and all is quiet, my ear is feeling almost normal too.  However sometimes, I am walking along and the balance thing happens.  Not that I fall but I know that I did not have these head issues last year-only a little hearing loss.  Then I was diagnosed this past February.  Then LIFE HAPPENED some more!
Oh-and I heard from the ENTon the way to the hospital one morning.  I called him because I had not heard the results of my ABR hearing test. He did get back to me-He told me that according to my ABR, I would lose my hearing from surgery or treatment.  The issue of blance and feeling out of my head MIGHT be helped, but no guarantees.  He told me to have another CAT? MRI of my head in July and see him in August.  So I think I will deal with this just fine, in light of the heart issues that our poor husbands have had.
So stay strong, Becky.  And thank you to everyone for their compassion-we are in each other's prayers, I know.  God hears us.
Love, Millie