Author Topic: Newly Diagnosed July 11,2012  (Read 5056 times)

lkdowell1

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Newly Diagnosed July 11,2012
« on: July 19, 2012, 11:52:04 am »
Sometimes the road to the diagnosis is a long and crazy one, especially if you have been diagnosed with anxiety and depression. I have had 4 years of vertigo, loss of balance, ear pain, ringing loudly in my left ear, lately gait changes and choking, my eye feels dry, and now I have slight numbness to my left side of my face. Like I had a Novocaine shot that is going away. I went and bought my own walker. I went to see my GP and said I am having more back pain above my L4-S1 fusion sight. I told him there is something wrong. Labs were normal. He ordered MRI of my whole spine. I went back for results. I told him I am feeling fatigued and had an episode of fainting. Spine has several damaged areas and bad neck spondylithesis, and some vertebral hemangiomas T8 and C8. These were new. Off to the neurosurgeon. Dr. told me what we could be done with spine but I said what about the choking, and dizziness. He assessed the left leg dermatomes and found decreased sensations. Off to the MRI for brain. By then, I am having a blurring of my left eye when I try to read. I return to Dr. and he did some neuro assessments of my eye and gag reflex on my left side. The acoustic neuroma is 17x9x9 in a barbell shape into my internal canal and into pontine angle pressing against cerebellum. He said this size should not be causing all the cranial symptoms. But I always have the rare cases multiple surgeries of muscles and nerves. ???  I see some of you have good clinics. I am a disabled veteran so we chose to go to San Diego VA for further treatment. Will see the doctor tomorrow with my MRI films. I am a female, 59 years of age.
Dx 7/11/12 AN 17x9x9, SRS12/12, loss of hearing to mod severe 4/14, few dark spots in tumor no size change. Moderate severe tinnitus, balance issues and horizontal vertigo

BlueSky

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Re: Newly Diagnosed July 11,2012
« Reply #1 on: July 19, 2012, 12:59:56 pm »
Hi there and sorry you were diagnosed with this! Unfortunately i was just diagnosed in May and have been lucky enough to find this site. I wanted to let you know if you check the insurance category on this forum, there is a military thread that folks keep active that may help you find treatment.

jaylogs

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Re: Newly Diagnosed July 11,2012
« Reply #2 on: July 19, 2012, 06:24:06 pm »
Hello there! Let us know how it goes with the diagnosis and your eventual treatment plan.  This is a good place for info and support. If you need to vent, this is the best place because chances are at least one of us out here that has been through what you are going through and can relate. I know the rest of us can relate in someway of what you are going through as well! :)  Take care and keep us updated!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

wwarr

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Re: Newly Diagnosed July 11,2012
« Reply #3 on: July 19, 2012, 10:19:24 pm »
Glad you found us.  Sorry you were given the news of having an AN but there is great support on this forum.  Keep us updated on what you decide to do.  I know this is overwhelming news but please know you are not alone.  We have been where you are and there is light along your journey!   Best wishes and stay strong!
Wendy
4 mm x 8 mm 12/08
1.4 cm rt. AN middle fossa on 7/23/10
hearing and facial nerve preserved. Grateful for brilliant surgeons Dr. Friedman/ Dr. Schwartz @ HEI in LA, CA.

post op chronic headaches
”Faith in every footstep...let go and let God”

Jim Scott

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Re: Newly Diagnosed July 11,2012
« Reply #4 on: July 20, 2012, 03:31:24 pm »
Hi, welcome - and thank you for your service to our country.

I'm sorry that an acoustic neuroma has been added to your many physical challenges but I'm glad you were able to find the ANA website and discussion forums.  I hope your physician consult gave you some answers/direction and that these forums can be of some benefit to you.  Please try to stay connected here.  Thanks.


Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

It is what it is

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Re: Newly Diagnosed July 11,2012
« Reply #5 on: July 20, 2012, 07:31:13 pm »
You have come to a supportive place with many who are willing to help those of us who are newer to the diagnosis. 

Welcome!!!! :)

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

millie

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Re: Newly Diagnosed July 11,2012
« Reply #6 on: July 21, 2012, 07:36:26 am »
I am also a newbie and trying to decide my treatment.  You seem to be in California and near the HOUSE clinic/St. Vincent Hospital center everyone talks about on this forum...they give you a free opinion...might sending them your MRI be a good idea for you?  I sent them mine last Monday and received a phone call last night but was not here to receive it.  Just a thought if you are in California.
Best wishes.
Millie

arizonajack

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Re: Newly Diagnosed July 11,2012
« Reply #7 on: July 22, 2012, 09:03:50 pm »
I see some of you have good clinics. I am a disabled veteran so we chose to go to San Diego VA for further treatment. Will see the doctor tomorrow with my MRI films. I am a female, 59 years of age.

It's unfortunate that you went through so much distress until you were diagnosed. I was also diagnosed at the VA but didn't have any significant symptoms until last December when I discovered that I had a total loss of hearing on my right side. My primary referred me to the audiologist for testing and hearing aids for my almost good left ear. She referred me to ENT for evaluation. From there I was set up for an MRI in April. The MRI found a small AN and I'm set up for the next MRI in October.

Even though appointments had to be set up a month ahead I was impressed with the VA facilities (central Phoenix) and the professionalism of the providers.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

lkdowell1

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Re: Newly Diagnosed July 11,2012
« Reply #8 on: August 10, 2012, 05:06:14 pm »
I have had great doctors at the VA. I was referred to San Diego Navy Medical Center for radiology oncology. Dr. Wilds was great in explaining procedure. I am still waiting for the neurosurgeon visit at the VA. I will make a decision after that visit.
Dx 7/11/12 AN 17x9x9, SRS12/12, loss of hearing to mod severe 4/14, few dark spots in tumor no size change. Moderate severe tinnitus, balance issues and horizontal vertigo