Author Topic: New and Nervous  (Read 9189 times)

ginger21

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Re: New and Nervous
« Reply #15 on: December 18, 2009, 10:45:20 pm »
Wow Ginger, our stories are very similar! I moved from Sacramento back to my hometown, Chico, in '07 when my daughter was born. Have you determined where you'd like to have your treatment? I am meeting with Dr. Jackler at Stanford on Jan. 5th. Not too far from us, so I'll have to let you know how it goes.  :)

Kim,

I have not made my decion on where I will have treatment. My insurance is an HMO and I am in the UC Davis medical group. So I have not just yet looked into getting a referral outside of the network. My Dr is Rodney Diaz. He is UCD's AN specialist. I have only met with him once, for my diagnosis. I have another appointment with him on Jan. 27 to discuss what my options are. I am going to start there. The only thing is he has told me so far that surgery would be my best option. After my meeting with him I think I am going to consult with the radiolgest specialt with UCD, and then check with my insurance and see what it will take to go out of network and talk with the people at Stanford. Please let me know how it goes.

Ginger

( cleaned up the quote)
« Last Edit: December 18, 2009, 11:55:26 pm by sgerrard »
W & W as of 01/27/2010 keeping my fingers crossed for the next 6 months
4mm AN-right side
www.facebook.com/gingerleigh72

knakag01

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Re: New and Nervous
« Reply #16 on: December 19, 2009, 11:07:12 am »
This was a great help, Mark. Thank you so much for sharing! I definitely need to explore Cybeknife treatement. It is strange to me that none of the doctors I've seen thus far have suggested it.

Kim


Kim,

sure, glad the information was helpful

Here's a link to my AN story on the Cyberknife patient page. It has only been updated through my 6 year check up in 2007, but I had my 8 year last month and it would read the same

Mark

http://www.accuray.com/uploadedFiles/Patients/Patient_Stories/Mark%20Patient%20Story%20FINAL.pdf


Kim
1.9cm x 1.2cm AN Right side
Diagnosed 11/09
Translab with Dr. Jackler @ Stanford on 5/20/10
Facial Paralysis (temp) & SSD Right side, some balance issues but not as bad as I thought :)

moe

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Re: New and Nervous
« Reply #17 on: December 19, 2009, 12:23:55 pm »
Hi Kim and welcome!
Just reading the posts. You have some great advice and buddies already  and that is what really helps.
I was also wondering why the docs didn't recommend cyberknife. It's a breeze compared to surgery. Doctors recommend what it is that they do the most. That's why it is so important to get different opinions.
I had no choice except translab due to location.
Try not to fret over the holidays. The little booger is not going anywhere!
Will be interesting to hear what your outcome is.
Take care and happy holidays to you and your family.
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Mark

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Re: New and Nervous
« Reply #18 on: December 19, 2009, 03:31:52 pm »
This was a great help, Mark. Thank you so much for sharing! I definitely need to explore Cybeknife treatement. It is strange to me that none of the doctors I've seen thus far have suggested it.

Kim


Kim,

sure, glad the information was helpful

Here's a link to my AN story on the Cyberknife patient page. It has only been updated through my 6 year check up in 2007, but I had my 8 year last month and it would read the same

Mark

http://www.accuray.com/uploadedFiles/Patients/Patient_Stories/Mark%20Patient%20Story%20FINAL.pdf




Assuming your initial diagnosis was by an ENT, it's not totally surprising (but is disappointing) to me that CK or GK were not suggested as options. The reality is that many ENTs may know how to disgnose an AN , but they do not stay current on treatment trends and standards. this is especially true of older ones where surgery was the only option back when they were in medical school. I would dare say that there are many of us on this forum that would score higher on an AN test than many ENTs

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

leapyrtwins

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Re: New and Nervous
« Reply #19 on: December 19, 2009, 06:41:46 pm »

I would dare say that there are many of us on this forum that would score higher on an AN test than many ENTs

Ain't it the truth  ::)  The best things my ENT did for me were 1) order my diagnostic MRI and 2) refer me to an outstanding neurotologist. 

I saw my ENT after my AN surgery and mentioned that I ended up SSD and was seriously looking into having a BAHA implant - and he had no idea what I was talking about.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Tricia (horsekayak)

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Re: New and Nervous
« Reply #20 on: December 21, 2009, 10:45:36 am »
I echo Mark's opinions...people recommend what they know best .That's why the best thing i did was listen to forum members here, and talk to quite a few physicians (including sending off my MRI images/notes to those who indicated the most interest in working with me). (Note:  I think HOUSE in Los Angeles is still doing free phone calls/phone consults after they get your MRI info..check their website)

I had Linac (a type of radiation/radiosurgery treatment) at Univ of Fl on Dec 1 of this year, so it's been 3 weeks since treatment.  Radiosurgery was not even mentioned as an option with first neurosurgeon i talked with, and i was very bothered that he was so so insistent on ony doing one particular type of surgery on me, especially since i had usable hearing in my right ear.   i  called his office later, and asked how many surgeries he had done, and found out he had not even done that many surgeries...(i guess he wanted to use me to "up" his surgical procedures count...who knows?     That's why it's important to take the time and effort to talk with lots of neurosurgeons, about ALL possibilities.

After talking with lots of other surgeons, i was able to make decision to do radiosurgery, and since there were also some other medical issues, this was the best option for me.  I have been totally with happy with my decision, and am feeling fine...some mild dizziness (existing prior to the Linac) when i stand up, move, turn, sneeze but am fine while sitting, and am ready to go back to work, and am already ridiing horses again. (carefully, walk, shor trots, and i ALWAYS wear a helmet, even before all this)

Mark's article about his AN is excellent, and it was a great help to me.  Hope it helps you as you move toward making a decision. And it is never really easy, but at least you can make an informed decision that you are comfortable with in your heart, and that's what counts.
Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

"Excellence is to do a common thing in an uncommon way"...BT Washington

Gail Melson

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Re: New and Nervous
« Reply #21 on: December 24, 2009, 06:32:02 pm »
I'm not a doctor either but I've had both microsurgery (retrosigmoid approach, I think) for a 4cm, golf-ball sized AN and then Gamma Knife for a 2cm meningioma (benign brain tumor). The AN neurosurgeon was great and did a fantastic job. My AN was too big for radiation - or at least that was the advice at the time (1998). Recovery took several weeks even though I was walking pretty well a few days after the 15 hour surgery. When the 1cm meningioma (that they had found when they found the AN) started growing a few years ago, I met with a different neurosurgeon (my original neurosurgeon had moved out of the area) and he gave me a choice of either another craniotomy or Gamma Knife. He told me to think it over, which I did for about 2 seconds, and said Gamma Knife for me. The Gamma Knife surgery was amazing. Instead of a 15 hour invasive surgical procedure, I spent several hours getting very accurate MRIs and spent a short while being irradiated and that was it. I walked out that day, went home and took a nap, and the next day went to a picnic with my family. It was amazing. I think it's true that a doctor will tell you what he or she is most familiar with. My last neurosurgeon was certified in both procedures. I'm out on the east coast but I'm sure there are doctors out there who could give you advice on both. I had good experiences with both. However, if I had to choose now, I would definitely go with radiation. I had the Gamma Knife "surgery" on a Friday and was back at work the following Monday. Kind of amazing.

Best of luck, and happy holidays!
Gail Melson

pjb

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Re: New and Nervous
« Reply #22 on: December 25, 2009, 07:59:53 am »
When I was diagnosed I did not do any research just the basic about what a AN was did not know about the many different options out there either. I guess mostly at first I was just in shock and several of my doctors in different fields all said surgery was their only recommendation as to have the tumor removed.  I did but now if I did all the research I am not completely sure I would have done things differently I ask myself that question everyday... but then again they say that the tumor is completely removed and I guess in one way I feel better that I know that it is out of my head.  Just research and make sure you feel you have made the right decision and have no regrets.

Regards,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

suboo73

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Re: New and Nervous
« Reply #23 on: December 27, 2009, 06:44:08 am »
Hi Kim, and welcome!

Glad you have found the this Forum, as well as others linked to it (like Cyberknife).  The folks here are FANTASTIC, as you already know!
I believe it is important to research all your options, too - i am still doing this after 1 year.

My thoughts and prayers are with you on your AN journey!
Please keep us posted on your progress.
Sincerely,

Sue

PS  My nephew and family live in Orland, CA - we visited in May, 2008 - lovely up there!

suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W