Author Topic: A bit scared  (Read 8117 times)

Anthony

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A bit scared
« on: April 25, 2005, 09:39:04 am »
In the course of trying to determine why I had chronic sore throat for 3+ mos this past winter, it was discovered that I had a 7ml AN on the left side. I am meeting with the doctor at U of Penn on Tuesday. What questions should I ask ?

GM

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Re: A bit scared
« Reply #1 on: April 25, 2005, 10:43:56 am »
Anthony,

First of all...we've all been there so being a little scared is absolutely normal.  Hopefully your appointment on Tuesday is with an ENT doctor.  The first question should probably be is, what is size of the tumor and it's location.  This will help you to decide on your treatment.  Location of the tumor may help to explain any facial spasms, or headaches (if pressing on the brain stem).  Normally tumors under 1 cm are considered small, 1 - 2 cm as medium and over 3 cm  large.   But, I have run accross people in here with large tumors and are having no side issues (hearing loss, dizzyness, etc). 
Since they just found your tumor your probably going to be set up for a bunch of tests to determine if you have any hearing or balance loss.  So be prepared for a bunch of tests....all are painless by the way   :)     Ask a lot of questions to your doctor, but if they want you to make a decison right them on what to do (radiation or surgery), I would suggest doing some research before making such a decision.  Unless you are in dire pain, bad vertigo, etc...

Please know that these are SLOW GROWING tumors.  This gives you time to educate youself on the different ways to deal with them, and make a choice.  You have reached a great source of information.  This site has, and still does, help me tremendously.  It's nice to know that there are others that share our condition.


Gary
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Anthony

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Re: A bit scared
« Reply #2 on: April 26, 2005, 08:40:26 am »
thank you Gary... I have had an MRI, I have no apparent symptoms, so I feel ok. The neurosurgeon at Univ of Penn, is supposed to be the best in the area so we will see what he thinks. Hearing test excellent in fact its the right side not the left where the neuroma is that is slightly weaker. I appreciate your kind words and thoughts and my best wishes to all who are dealing with this problem. thanks anthony

kristin

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Re: A bit scared
« Reply #3 on: April 26, 2005, 12:50:33 pm »
hi anthony, i just wanted to say that my hearing test was similar to yours, where my AN side was better than the non-AN side. the docs thought that was pretty amazing. i had middle fossa almost 2 weeks ago and didn't lose any hearing at all.
kristin
8 x 5 mm Left Acoustic Neuroma
Middle Fossa
House Ear Clinic
Dr. Derald Brackmann, Dr. William Hitselberger
April 14, 2005

"I have told you these things, so that in me you may have peace. In this world you will have troubles. But take heart! I have overcome the world." John 16:33

s.dinapoli

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Re: A bit scared
« Reply #4 on: April 27, 2005, 09:12:31 am »
Anthony, I had my AN removed 1 year ago tomorrow April 28th at Thomas Jefferson (Philadelphia). My AN was about 1.2cm which was surgically removed translab approach. My AN was on the right side like yours and I had lost considerable hearing over the years prior to surgery (no vertigo issues prior to surgery).  My hearing is completely gone in that ear now at least I think it is (should get another test done) but doing good thse days. Really look into all options and talk to others. People with smaller tumors tend to have better outcomes but remember there are never any guarantees and everyone is different. Univ. of Penn has an excellent Neurological reputation within the country so you should be in great hands whatever treatment you choose if any. Anyway, since I probably reside in the same vicinity.. feel free to contact me anytime since I would be glad to answer any questions.

Karla

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Re: A bit scared
« Reply #5 on: May 06, 2005, 03:48:50 pm »
Swetie, I have a large AN, against my brain stem.  This doctor is the best, Dr. Thomas Graham #903-595-2441....Good luck, and God Bless....Karla

Russ

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Re: A bit scared
« Reply #6 on: May 07, 2005, 01:02:31 pm »
In the course of trying to determine why I had chronic sore throat for 3+ mos this past winter, it was discovered that I had a 7ml AN on the left side. I am meeting with the doctor at U of Penn on Tuesday. What questions should I ask ?

  Hi Anthony!
   Did I miss something, or what is the correlation between the sore throat and the AN?
   I suppose little would attenuate your anxiety but we are here to read your concerns; Many of us having been in the pre-AN situation.
   Seems you have a good treating center!  -Russ

Karla

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Re: A bit scared
« Reply #7 on: May 10, 2005, 07:59:18 am »
Sweetie. One thing I did which helped.  Is when you are at home and have all these concerns and questions.  Buy a note book and write them down, and when you see your doctor, take your notes with you and discuss everything with him.  There were a few times, I would forget to ask about some concerns I had.  Because when you are discussing your AN, with your doctor, it is strssful. When I brought my notes and took notes during our visit, it really helped a lot.  I would read over my notes at home and really thought about what we dicussed.  Good Luck and God Bless...Karla

Destiny

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Re: A bit scared
« Reply #8 on: May 11, 2005, 02:58:38 pm »
Hi Anthony,

You may want to visit this site and/or any of the others and print out the questions to ask your doctor as well as do some research:

http://www.anarchive.org/

http://www.anworld.com/

http://www.anseattle.org/

Please note that I do not advocate any of these sites; however, they are created and maintained by people who have ANs themselves, so I tend to learn more from them then medical sites.  And, please note I am by no means including this site as a medical site.  I think this is a wonderful site to start learning about your condition.  Please do PLENTY of research before deciding anything.  And, just one note, as I saw one member write that these ARE slow growing tumors - yes that's true for the most part, but there have been a few cases where the growth has been rapid so it is important to keep getting MRI's while you are researching and deciding what to do.  Not meant to scare you because they are normally slow growing, but not always and it's best to be informed of everything - at least I think.  Your doctor will probably have you redo your MRIs every six months or so.
Best of Luck to you!!  I had GK in July 2002 so if you have any questions regarding that please feel free to contact me.  Take care and best wishes!

Karla

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Re: A bit scared
« Reply #9 on: May 12, 2005, 09:03:51 am »
Anothny,  These tumors are slow growing and usually are begine.  I have never heard of a fast growing AN.  My AN has been growing for 15 to 20 years.  I had the x-knife prcedure a year ago. My tumor was a 2.5cm against my brain stem.  I had a MRI lately and it has shrunk to a 1.5cm.  Think of personal and medical questions you want to ask your doctor.  Take Care sweetie!!  Karla