Author Topic: New here. A little overwhelmed!  (Read 3837 times)

kentcorbin

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New here. A little overwhelmed!
« on: April 16, 2015, 09:25:43 am »
Hello everyone. First, let me just say that I have been lurking on this forum since my diagnosis about 5 weeks ago--and wow, what a tremendous community and resource!

As I said, I was diagnosed with a smallish (5mm x 12mm), right-side AN about 5 weeks ago. I have seen multiple specialists (skull base surgeon, otolaryngology surgeon, radiation oncologist) and it appears I am in the lucky but confusing position of having all treatment options open to me. I change my mind re: surgery vs. radiation almost daily. The surgeons strongly recommend surgery, and the radiation oncologist believes I would be an excellent candidate for gamma knife. I guess if you have a hammer, you find a nail.

Mostly, I just wanted to introduce myself here. I'm sure I will be asking for help with specific questions in time.

For now, I was wondering if anyone has had any experience with the following doctors: Oliver Adunka (Otolaryngology), Michael Guiou (Radiation Oncology), and Daniel Prevedello (skull base surgeon), all at the James Center at Ohio State University's Wexner Medical Center.

Thanks,

Kent Corbin
« Last Edit: April 16, 2015, 09:33:13 am by kentcorbin »
32 Years Old, Diagnosed March 2015. 12x5 mm right-sided AN. Diagnosed via MRI. Treated at Cleveland Clinic 9-21-15 via Gamma Knife. So far so good!

CHD63

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Re: New here. A little overwhelmed!
« Reply #1 on: April 16, 2015, 11:22:25 am »
Hi Kent and welcome to this forum .....

As you have already discovered, this discussion forum contains a wealth of personal experiences of AN patients.  Please keep in mind that none of us are trained medical professionals, but we have a great deal of collective personal experience information.

As for experience of the doctors at Ohio State, you might take a look at the anausa.org main web page for medical resources and questions for doctors regarding their experience.  In the meantime, take a look at what the ANA recommends in a medical professional:  https://www.anausa.org/resources/medical-resources/selecting-a-medical-professional

Best wishes and gather your questions and ask away .....

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

evestew1

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Re: New here. A little overwhelmed!
« Reply #2 on: April 21, 2015, 10:16:07 am »
Hi Kent,
I'm sorry to hear of your diagnosis -  AN is no fun but there are a lot of great resources available and kudos to you for diving in with your research and due diligence.   All cases are different, but I'm wondering if your doctors have suggested that watch-and-wait might be an option for you?  Having recently been through treatment (translab surgery in Feb for a 3 cm AN), I would encourage anyone with a small AN to really consider & discuss that option with the docs.
best wishes and welcome to the forum!
Eve
Translab surgery 2/2/15 to remove 3 cm AN;  SSD and facial paralysis

mac84

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Re: New here. A little overwhelmed!
« Reply #3 on: April 22, 2015, 10:42:43 am »
Kent, I was diagnosed in Oct 2014 w/ an AN that is 1.19 CM. Just had the 6 month MRI and shows no growth so I'm staying on the watch and wait. Ride that path as long as you can if you aren't having any symptoms that you can't deal with. That's my plan!
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

ANnIdaho

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Re: New here. A little overwhelmed!
« Reply #4 on: April 24, 2015, 03:42:12 pm »
Hi Kent,

I'm a newbie too, just diagnosed myself beginning of March with a 9mm x 5mm right side AN. I know exactly what you mean by being overwhelmed with so many differing opinions. I live in Boise but have visited a radiation ontologist in Seattle, sent my MRIs to House and had a phone consult with a otolaryngology surgeon and sent my MRI off to Stanford. I've been told Gamma Knife is the way to go, that it is more precise.  My AN is running the whole length of my IAC which apparently decreases my chances for preserving my hearing (which is actually excellent at this time).  Been told Cyberknife is the way to go.  Been told only surgery will alleviate my symptoms which are only headaches and facial/ear sensations that range from crawling bugs to cold to tightness.  The surgeon said that this headache and neck/facial sensations are most likely due to my body compensating for my weakened vestibular nerve and it gets worse as the day goes on and especially after a full day of work (which is staring at a computer screen).  I know my AN is affecting my Superior vestibular nerve but not my inferior based on VNG testing.  It is so so so confusing and I want to make the right choice too.  So, I completely understand how you must be feeling. Some days I'm ok with wait and watch and see what happens and other times I just want a solution now and be done with it.  But from all I've read I don't believe we are ever really "done" with it.   

What symptoms are you experiencing?  Have you been told that what symptoms you have going into GK will most likely remain with you?

Best of luck to you on your decision.

Take care,

Bonnie
3/3/2015 MRI 9.2mm x 5.4mm AN discovered
Removed Middle Fossa 9/22/2015 by Dr. Friedman Keck Medcial Center. Hearing preserved! Doing great.  If you'd like more details as to surgery/recovery feel free to visit my caringbridge.org website @ http://www.caringbridge.org/visit/sayonaraschwammy

kentcorbin

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Re: New here. A little overwhelmed!
« Reply #5 on: May 12, 2015, 06:52:16 pm »
Oh wow. I thought I had an email alert set to notify me if my initial post received any responses. Apparently not. Thanks everyone, for the encouragement and advice! And sorry for my inattention to my own post. 

Eve: I did not, at first, consider watchful waiting. But the more research about treatment I do, the more sensible that course of action sounds. To be fair, my doctors did say waiting would be viable--but they seemed much more enthusiastic about active treatment options. My rationale vis-à-vis treatment HAD been: the sooner it is treated, the more likely I will be to preserve hearing. The more I read, however, the more I am thinking that hearing preservation is an unrealistic expectation, no matter what treatment I opt for. (Not that hearing loss is guaranteed, I understand--but let's be honest: everything I am reading seems to indicate that long term ("long term" being the often missing or misleading variable in the statistical data) hearing preservation is a coin flip at best, whether treatment is accomplished via radiation or surgery.) So, long story short, watchful waiting IS now a very serious consideration for me.

Bonnie: I'm sorry to hear that you are also facing tough treatment choices. There is so much information to try take in--and then to rectify against all the other information we have taken in. It seems like there is a point of diminishing returns when it comes to treatment research. I'm getting the feeling that I now possess most of the information I need to make a decision, and yet I do not feel very close to making a decision. One thing my doctors did stress (for me anyway--I know this advice doesn't apply to everyone) is that there is plenty of time to make a decision. There is no reason to rush into anything. I almost wish my tumor had some feature (size, location, shape) that would limit my treatment options--or at least nudge me in the direction of a logical treatment plan. But alas, the world is my oyster, treatment-wise! (Not really funny, I know. I fully appreciate that it is a lucky position to be in.)

Right now I have very few symptoms. (Right now, actually, none.)  I have had, over the last 3 years, 5 bouts of partial hearing loss. Hearing has returned each time with a course of steroids. This recurrent hearing loss is the symptom that spurred my GP to order the MRI. I have occasional tingly facial sensations and, rarely, tongue numbness. I also sometimes have a symptom that, pre-diagnosis, I called "severe brain fog." Like brain-fog on steroids. Brain-fog bordering on full-blown confusion. I am beginning to understand that this is probably my vestibular system suffering a sudden change. I do not feel dizzy, per-se, but it does feel like my brain is receiving bad or conflicting sensory input data, and really struggling to process it all. (Has anyone else reading this had such severe "brain fog" symptoms?)

Thanks again for the support and advice. This forum is a real life-saver.

« Last Edit: May 12, 2015, 07:12:07 pm by kentcorbin »
32 Years Old, Diagnosed March 2015. 12x5 mm right-sided AN. Diagnosed via MRI. Treated at Cleveland Clinic 9-21-15 via Gamma Knife. So far so good!