New user "yenna" Inquiry to the AN gang

[ppearl214]

Hi all, didn't want this buried in another thread as yenna is reaching out for answers..... Phyl

Hi, I'm a total newbie to forums and hope I am doing this right...First of all I am "So Happy" to find this group! I have a 2.5cm left AN, diagnosed 8/07. My past history is I have had bouts w/ migranes, clutzyness since my 20's. I am 45. My first head CT was in my 20's...no tumor but I did have a allergic recation to the dye used. I have had intermittent bouts w/ vertigo (but mainly while Jet Skiing or Snow skiing/ Snow skiing is not an option any longer is was so bad).

Aprox. 1 yr+ b/4 the AN was found, I was in for a routine eye exam and my optic nerves were swollen. I was sent to an opthomologist/neuro. who ordered a CT w/out contrast...no tumor was found and I was diagonosed w/ "Psuedo Tumor Cerebri" (false tumor). I went through a spinal tap, diuretics & multiple field vision tests, was told to loose wieght!

Then in July I thought I had a wax blockage and tried the warm water ear syringe a few different times w/ no luck the after a couple weeks the ringing started which made me call my GP. She said the ear was clear & sent me to an Audiologist who found hearing loss on that side and sent me to an ENT. The ENT ordered the MRI w/ contrast and the AN was found. The tumor was not psuedo! If I had had the CT w/ contrast or the MRI a year+ earlier I would still have hearing & no tinetus (my balance I have been told is totally gone on that side).

I have a question for the group re: radiation and where FRS is available and who DR wise is good to ask for? I have seen about 5 or 6 Dr's and think I am leaning in the direction? My last visit ws to Dr William Friedman @ Shands in Gainesville FL, he dose not do fractioned. I lost my dad the end of Sept and that sent my world into a whole other direction... but I need to get back refocused on diciding what to do next? I was considering Pittsburg, Mayo in Jacksonville & Johns Hopkins? but then I found this forum so any help is appreciated...

Phyl, if you read this it may need to be placed elsewhere??  Thanks

[sgerrard]

Hi Yenna,

Welcome to the forum. Phyl has moved your post for you, she is a good mother hen that way.

My first reaction was about the tinnitus. It is a badge of honor for almost all ANers; most of us will have it the rest of our lives. Even if you had had the CT w/contrast or an MRI a year earlier, and caught the AN then, and saved some hearing, you would very likely have the tinnitus anyway.

I looked at the Shands web site. They are using a LINAC machine in single-shot mode, with a metal head ring. This makes it similar in effect to Gammaknife. You can find other facilities that use LINAC, Trilogy, or Novalis for a 4-5 week FSR treatment protocol.

Being a CK patient myself, I would suggest taking a look at the cyberknife support web site. There is a forum where you can post questions to practicing doctors, and a link where you can get contact information for some of the doctors. Dr. Spunberg, for instance, is at the Cyberknife Center of Palm Beach, FL.
Forum:  http://www.cyberknifesupport.org/forum/
Doctors: http://www.cyberknifesupport.org/about_the_doctors.html

Cyberknife is done in 3 to 5 days, using a plastic mask to hold your head in place during a 30-60 minute treatment each day. It combines the high precision of the one day treatments with the gentler impact of fractionated treatments.

There are people on this forum who have used most of the available systems, so if you are looking for one in particular, someone may come along with a specific suggestion for you.

Best wishes on  the outcome.

Steve

[macintosh]

Hello Yenna--

I had LINAC with Friedman at Shands a year ago on a small AN. I've had good results, but it is hard to get followup attention from them. If your insurance will cover it, Hopkins seemed to me to be the best facility on the East Coast. They have a very high record of hearing preservation. Pittsburgh has tons of experience and very good cure rates, but they do GK (one-shot). In general, I'm a believer in University teaching hospital settings. There are always lots of people involved in every procedure, so nobody can ever take a short cut without ten other people noticing.

Macintosh

[sgerrard]

 In general, I'm a believer in University teaching hospital settings.

That's a good point. I had the same feeling about getting Cyberknife at Stanford, rather than at a "commercial" clinic. The university setting was more hectic, with lots of things going on, and lots of busy people bustling around, and interns and residents along side every senior doctor. But there also seemed to be a much greater interest in follow up and long term results. For them, every case is potentially part of a clinic trial or research paper, so they really pay attention to what kind of results they are getting.

Steve

[AROBTEK]

Hello 'Yall,
I am also a newly diagnosed newbie.  I have a 2.6 cm AN on the left side.  I live in middle GA and have been referred to Dr. Doug Mattox at Emory University Hospital in Atlanta, GA.  Do any of you know anything about the amount of AN traffic at Emory and/or Dr. Mattox?  The info I have found online about him sounds impressive and my ENT thinks highly of him.

Thanks,
Annette

[krbonner]

I don't have personal experience with Dr. Mattox (I'm in New England), but I've heard his name around the forum quite often.  People (AN patients) who I trust to do good research speak very highly of him. 

Katie

[AROBTEK]

Thank you so much.  As all of you experienced members of this group know, this is a very stressful time for us Newbies.  I haven't found too many posts from Georgia patients so I am very glad to hear that Dr. Mattox is regarded well by folks on this site.  Finding this site has helped me tremendously and I have to admire those of you who so willingly devote time to help inform others about ANs. 

Thanks and Merry Christmas to you all,
Annette in GA
2.6 cm. L side diagnosed 12/10/07
apt. @ Emory Univ. Hosp 1/2/08

[mema]

I too had a MRI without contrast 2 yrs before my AN was discovered with contrast.  I live 2 hrs from Shands.  I spoke with them also as well as John Hopkins, Thomas Jefferson and MD Anderson in Orlando.  I chose MD Anderson for 26 fsr treatments.  I actually stayed at the Hubbard house, my husband and I next to the hospital.  At $40 a day for the both of us, wonderful meals included and a wonderful caring staff.  I visit them occasionally.  I did request a room with T.V.  See I'm a TV Aholic. It truly was home away from home. 
                                                                                                                                                                                             


                                                                    mema