Author Topic: New AN recipient; scared and lots of questions  (Read 4477 times)

Stu

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New AN recipient; scared and lots of questions
« on: March 30, 2007, 04:17:55 pm »
Hi.  I am brand new to this forum - or to any online forum anywhere for that matter.  So not sure I'm doing this right, but hear goes (get it?)
 
I woke up about a week and a half ago with an intense, unrelenting ringing in my left ear, and noticeable hearing loss.  After a second sleepless night of it I saw a doctor, who then referred me to an audiologist the next morning, who then told me I had suffered sudden unilateral severe hearing loss, possibly due to a viral infection, and that it was permanent and something i would have to learn to live with.  I had an MRI 5 days later and, hearing nothing (literally) from any doctor for 3 days, I went back to get a copy of the MRI for myself and learned that they suspect an acoustic neuroma approx 1.1cm x 1.2 x 2.1.  From what little I've read here today, that seems to be a pretty small one, so I likely have more time and options than my brain and extremely-nervous psyche are currently telling me.  But I know very little yet about treatments, experiences of others, what to expect, whose an expert in Colorado where I live, etc.  After many phone messages, I finally got a PA from the ENT office to call me back, and he admitted they were not the experts in this kind of thing, and were referring my case to Dr. Steven Cass at University of Colorado Hospital (anyone know him?) and that he would get back to me in a week or so.  Makes me want to scream that no one else sees the urgency that I do, but I guess I just have to have patience.

So while I wait for a medical expert to contact me, can anyone out there who's actually been thru something similar, shed any light on options, your experience, any knowledge of experts in Colorado in either microsurgery or radiosurgery?  Any alternative treatments?  Acupuncture?  Marathon-sock-sniffing?  Anything at all?

  -Stu

Desilu

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Re: New AN recipient; scared and lots of questions
« Reply #1 on: March 30, 2007, 05:17:45 pm »
Hi Stu,

Sorry, I can't help you with any doctors in Colorado. I know you are new to this website and we are all here to help you any way we can. If you plan on going with surgery, House Ear Clinic in Los Angeles will give you a free phone consulation if you send them your films. Your AN is not huge, so you have time to research and learn about your situation. Please make sure the doctors answer all of your questions to your satisfaction. If you don't feel comfortable with them, then it's time to look for another doctor. You are putting your life in their hands. Numbers do count when it comes to AN surgery. The more they have done the better. There a many others on this website that can help you with researching the radiation route. I am not one of them. I can only speak from my experience. I wish you the best on your AN journey. The best decision is and educated decision. Do all the research that you can and then decide.  Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

pearchica

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Re: New AN recipient; scared and lots of questions
« Reply #2 on: March 30, 2007, 06:17:13 pm »
HI posted on your other thread- my thread on this page- check it out when you have a chance.  And remember, the first week is the worst week until you meet with the expert.  Know that there are a lot of us out here and available to help.  Take care Stu- Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Obita

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Re: New AN recipient; scared and lots of questions
« Reply #3 on: March 30, 2007, 06:52:36 pm »
Hi Stu:

Welcome to the family.  Sorry about your diagnosis but glad you found us.

ENTs don't know too much about ANs.  They diagnose them and send you off to the experts. 

Your's is small.  You have time to see as many doctors as you wish.  I can't help with CO doctors either.  Try doing an advanced search on here for Dr. Cass. 

Some people want it out, some want it radiated and some can watch and wait for a while.  Good luck to you.

 - Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Stu

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Re: New AN recipient; scared and lots of questions
« Reply #4 on: March 31, 2007, 05:49:42 pm »
Forgive my cross-posting here and on "Physicians."  New to this.  Always preferred to talk with people face-to-face and never joined an online forum in my life until yesterday (and I don't know anyone who has been though this whom I could meet face-to-face!)

Anyway, I wanted to thank you all so much for responding.  Yesterday (the day I learned about my tumor) was my twin sons' 5th B-Day and I had to put on a big smiley face and put this all aside to do something normal and fun and meaningful, because yesterday could NOT be about me.  I was so touched and excited and encouraged to come back and see your responses!  Thank you so much for sharing your experience, advice, information, and well wishes.  While it's not a club I ever wanted to join, thank you for welcoming me in!

  -Stu

ppearl214

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Re: New AN recipient; scared and lots of questions
« Reply #5 on: April 01, 2007, 09:08:30 am »
Hi Stu and welcome. Although I do not recommend Marathon Sock-Sniffing as a cure for AN's (remember, I live in Boston, so if you need those socks with the upcoming marathon, I'll try to collect some for you :D ), there is an extreme amout of information on this website, as you can already see. I cannot respond as to CO and hoping you are near Denver as I'm sure there are some great physicians in the area that can help..... but, prop your feet, sit back with a favorite beverage and let us know if you spot anything here that you may have questions regarding treatments, outcomes or emotions affiliiated with being an AN'er.  We're here to help, give our good ears and welcome you here.

i'm glad to see that you have been persistent with your dr's and hoping you find info here that will be beneficial in your discussions with them.

Again, welcome!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

bobby

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Re: New AN recipient; scared and lots of questions
« Reply #6 on: April 10, 2007, 01:45:30 pm »
hey Stu,
   I was in a very similar situation about four months ago.  Lost my hearing, went to doctor, got MRI, and then found this forum.  I live in Oregon and first looked into having surgery here.  I Made an appt. for surgery and met with the surgeons and just really wasn't impressed.  They wouldn't return my emailed questions etc.  Through this forum I heard about the House Ear Clinic.  This is where I had my surgery done on March 22nd.  I was very happy with them from day one.  I sent them my MRI and a surgeon called me within 24 hours and was very informative.  They do 6-7 of these surgeries a week and I felt very well cared for.  I would highly recomend House Ear Clinic if you chose to have surgery.  I know this is a scarry time right now for you.  Something to keep in mind is that while this forum is very informative it can also be overwelming.  There are some horor stories.  I think that those of us that had a pretty routine surgery and quick recovery don't post enough on this forum when they get out.  Feel free to email me I would be happy to answer any questions I can.  Sock sniffing did not work for me, maybe try underwear

Battyp

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Re: New AN recipient; scared and lots of questions
« Reply #7 on: April 12, 2007, 06:18:44 pm »
HI Stu and welcome.
I think I'd forgo the sock stuffing especially if you're using a teenage boys set of socks  LOL
I can't help you in Colorado with doctors but rest assured we have all been or are in the same boat you are.  We will try to answer any questions you have.  Please send for the brochures from the ana they are very informative.
You can get copies of your mri and report and send to house for a consult as well as a few other treatment places. 
You an is on the small side so you have time and options.  Take a deep breath.  An AN is not the end of the world just a blech in our path in the world.  :-\
You want to ask any doctor you discuss treatments with how many an's they have seen in the past year.  You want the guy/gal doing about 30 or so a year not 30 in their career!  House sees a lot.  Make sure they specify between an's vs. other types of tumors.

all my best to you,
Michelle

Stu

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Re: New AN recipient; scared and lots of questions
« Reply #8 on: April 17, 2007, 04:06:24 pm »
Thanks all for your replies, both public and private.  Quick update.  The doctors pounded me with steroids for 12 days in hopes of reducing the swelling and regaining some of my lost hearing.  Miracles do happen!  After a second hearing test my hearing loss in that ear is now classified as mild to moderate (vs the initial "severe")!  The ENT was even a little surprised at how much was regained.

So I've met with 2 doctors at CU Hospital after meeting with my local ENT.  I think I'm pretty comfortable with my decision to go with single stereotactic radiosurgery, which will happen first thing this Thursday.  One of the docs (the radiation oncologist) is pretty optimistic about the amount of hearing I should retain, while the other (an ENT certified to do both microsurgery and radiosurgery) paints a less-optimisitc picture about the hearing, saying patients' hearing gradually dissipates quite a bit over the course of a couple years due to the radiation, and I should count my hearing rebound as a "gift." 

So question for all of you who have had single radiosurgery (and I suppose I should have asked this sooner since I go in early Thursday morning!) -- did you lose much hearing and/or balance control after your radiation?  What other side effects did you encounter?

Desilu

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Re: New AN recipient; scared and lots of questions
« Reply #9 on: April 18, 2007, 01:36:49 pm »
Hi Stu,

I cannot answer your question about radiosurgery but I want you to know that I am excited for you that you have made a decision that you are comfortable with! The rest is up to the Doctors. Please keep us posted on your progress. I will be thinking of you on Thursday and my prayers will be with you.  Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

Mark

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Re: New AN recipient; scared and lots of questions
« Reply #10 on: April 18, 2007, 06:40:49 pm »
Stu,

One of the first Cyberknife facilities set up outside of Stanford was at Boulder Community. My understanding is that they have a good reputation and have treated numerous AN's. If you are leaning towards radiosurgery you might want to check them out as well. I assume that CU is talking GK if they are referring to a one dose protocol. Nothing wrong with that, but the hearing preservation rates appear to be better with the staged approach. BTW, I'm a CU grad FWIW

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