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Author Topic: Anyone else?  (Read 4188 times)

28Lisa

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Anyone else?
« on: August 23, 2009, 03:09:17 pm »
I changed my neurologist last month due to the fact I would not have to travel an hr each way..........

Upon going over my files, she suggested I get bloodwork to see if my AN was genetic, I agreed.  Anyone else faced with this? 
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A.N. 4+cm, 9/11/07 @ NY Presbyterian Hospital, Dr. Phillip Stieg
post opt - partial facial paralysis on left side, total hear loss on left side, speech altered, loss of taste, smell,balance, loss of sensation on right side from shoulder down, low motor skills, eye weight 11/07

lholl36233

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Re: Anyone else?
« Reply #1 on: August 23, 2009, 03:27:20 pm »
Read my post.

http://anausa.org/forum/index.php?topic=10308.0

Nobody ever suggested my tumor was hereditary.  I didn't know there was a blood test?  I have my suspicions.
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Proton Radiation for my hemangioma at MGH December 2009.  Hearing has improved.  Doing great!

jerseygirl

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Re: Anyone else?
« Reply #2 on: August 23, 2009, 06:30:01 pm »
Lisa is probably talking about blood test for NF2 where they sequence the entire chromosome 22 and find mutations responsible for NF2. This is also called bilateral acoustic schwannomatosis and ANs are obviously its highlight.  There are two types of tissues that can be analyzed this way: tumor tissue and the blood. Full blown cases of NF2 have mutations in tumors and the blood. Somatic mosaics have mutations in the tumors but not the blood. They can also have mutations in some other cells in the body but it is impossible to know which ones. I have read a study where sporadic ANs carry the same mutations so  it can get really confusing. Nevertheless, I hope I clarified the issue some.

Lisa, who is your neurologist that suggested it? He must be really good and very knowledgeable about ANs. Most neurologists don't have a clue.

              Eve
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

28Lisa

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Re: Anyone else?
« Reply #3 on: August 25, 2009, 12:56:26 pm »
 Xena Morales at Long Island College Hospital and thanks for the info I had no clue what was going on besides genetic bloodwork lol

Thanks again
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A.N. 4+cm, 9/11/07 @ NY Presbyterian Hospital, Dr. Phillip Stieg
post opt - partial facial paralysis on left side, total hear loss on left side, speech altered, loss of taste, smell,balance, loss of sensation on right side from shoulder down, low motor skills, eye weight 11/07

jerseygirl

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Re: Anyone else?
« Reply #4 on: August 25, 2009, 01:12:25 pm »
Thanks, Lisa, it is good to know just in case. So far I am really impressed with her. It would be great if you post what she has to say about NF2 or AN genetics. She might have some new information that I am not aware of because medical knowledge is evolving. Good luck with everything!

             Eve
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Mickey

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Re: Anyone else?
« Reply #5 on: August 25, 2009, 03:07:34 pm »
Iv`e mentioned before that I asked my doctor whats the latest and one thing he did mention is much research on a drug especially to shrink NF2`s with the hope of getting into all AN`s and I`m sure other types of tumors. NYU Medical Center.  Best Wishes, Mickey
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jerseygirl

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Re: Anyone else?
« Reply #6 on: August 25, 2009, 05:42:36 pm »
Thanks, Mickey, I was aware of that. I am actually followed by a neurologist since my first (!) surgery who now heads a company that developed the drug you are talking about. He also advocated for me to the insurance company, God bless him! Thanks for the info anyway. I hope to see you and your lovely wife at the fall luncheon. Take care,

              Eve
Logged
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.
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