Author Topic: GK probably - Rochester, MN  (Read 6288 times)

Joey

  • Jr. Member
  • **
  • Posts: 57
  • Change could be right around the corner.
GK probably - Rochester, MN
« on: August 12, 2008, 12:29:52 pm »
Hello, everyone.  I am new here so feeling pretty weird.  On June 30 of this year, I was happily walking around Home Depot with my husband, picking out gutters ::)  Quite suddenly, my hearing disappeared in my left ear, it started ringing like crazy and I felt a bit woozy, like when the elevator drops.  About a year ago, I noticed fullness in the same ear and went to the ENT for hearing tests and to complain about it.  They did hearing tests and noted some loss, not catastrophic.  I learned to live with it, but the incident on the 30th scared me back to the ENT the next day.  He ordered yet another hrg test and it was emotional when I had to tell the audiologist, "can't hear any of the words, only that you are talking, no enunciation".   ENT ordered MRI and prescribed 2 wks on Prednisone.  Good news:  my hearing is back, better than a year ago even.  Bad news:  MRI reveals sm to medium size AN.  ENT refers me to Mayo Clinic, and yes, had a whole afternoon of appointments.  Things went favorably, the multiple Drs. presented facts about GK and also about surgery - told me to go home and decide.  I tried the approach "and what would you decide if you were me" and wouldn't you know, they wouldn't go there.  It was strange, and although I know they want the decision to be mine - after weighing the statistics, it was becoming obvious that I have to pick GK.  With surgery, I was told I had a 90% chance of being deaf afterward.  With GK, the risk seems lower, with them citing it as 50%.  I was told that the success rate with GK is 93% (then my rather dry neurosurgeon told me that most of his peers would tell me 96%.)  Is it possible he was giving me an answer about what course to follow, even though he told me that he couldn't answer my question about what "he would do if in these shoes"?  Actually what he said to me, was, "we are two different people and just wouldn't think the same".   His personality was very clinical, and I am sure he knows his stuff and otherwise the visit went well.   So, anyone familiar with Mayo Clinic?  I am about an hour and a half from there, being from WI.  Anyone from the area?  I am in the process of setting up an appointment for GK, perhaps end of Sept.  Any input from those of you who have been there is appreciated.   Thanks!!   Joey
« Last Edit: August 12, 2008, 12:31:23 pm by Joey »
Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

Anomar11

  • Full Member
  • ***
  • Posts: 134
Re: GK probably - Rochester, MN
« Reply #1 on: August 12, 2008, 03:20:00 pm »
Hello Joey,
I went to Mayo Clinic the end of July and am trying to decide between Gammaknife and Cyberknife.  If I have GK, it will be at Mayo.  What's right for one isn't right for the other, and many people choose surgery.  I was told those same stats re: hearing, gamma knife success, etc.  How big is your AN.  I live in Upper Michigan.  If you want to talk further, please send me a PM.  Take care and remember, this isn't something that needs to be decided immediately as these things are generally slow growing.    Mona
L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

mk

  • Hero Member
  • *****
  • Posts: 968
Re: GK probably - Rochester, MN
« Reply #2 on: August 12, 2008, 07:34:40 pm »
Hello Joey,

Well, first of all welcome to the forum. You will find tons of information on the various treatment options.
In addition to many people who had CK, there are quite a few who had GK recently, or are at least considering it. There are quite a few recent threads on CK vs. GK. My understanding is that Mayo is one of the best centres on GK.
I had GK recently, in April. I also got a bout of hearing loss pretreatment, that came back with prednisone. Feel free to PM me, I know you probably have tons of questions right now.

Take care (and a deep breath)
Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: GK probably - Rochester, MN
« Reply #3 on: August 13, 2008, 02:42:55 pm »
Hi, Joey:

No advice to offer as I live far from you, had surgery and FSR, not GammaKnife, and only know the Mayo Clinic by it's reputation, which is excellent, especially when it comes to GammaKnife experience. 

I just wanted to extend my welcome, express my regret that you've been diagnosed with an Acoustic Neuroma and assure you that, whatever your decision on treatment, you'll find lots of support, information and useful, practical advice here. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Joey

  • Jr. Member
  • **
  • Posts: 57
  • Change could be right around the corner.
Re: GK probably - Rochester, MN
« Reply #4 on: August 14, 2008, 09:47:38 am »
Hello everyone - thank you for the comforting feedback.  I think this is one of the best support systems around.  Although I have been feeling a bit "shell shocked" I read on and am touched by the caring here.  I should have previously mentioned, my AN now measures 1.0 X 1.3 cm "in its extracanalicular component, extending thru the auditory canal BUT does not appear to involve the vestibular system."  They also say my brain is normal- arguably!  Anyhow, I am not sure how to perceive that entire sentence.  My balance is definitely getting worse - I was walking my 2 poodles on our country road, looked up at a jet, moved my head suddenly behind to see if a car was coming.  Next thing I knew I was laying on my backside in the ditch, legs in the air!  Not pretty.  So sudden head movements not a good idea.  I have fallen a couple of other times in the last month and attributed it to lack of grace.  Sometimes I will have dizzy feelings just sitting at my desk, perfectly still.  I know my AN was caught pretty quickly, does anyone know if that paves the way for a better/easier outcome?  I am really quite concerned about retaining a little hearing in the ear, as I am a court clerk and work under a few judges:  if I can't hear what sentences they are handing out, this could be a problem.  It is already, so that part is scaring me.  My job has become way more stressful now and I find myself being defensive --- hmmmm.  One judge is hearing impaired, so that person gets it.   At the time of my acute symptoms a month ago, I did have tingling/numbness on one side of my face. After the 2 weeks of Prednisone, that improved.  The Mayo neuro felt that shrinkage probably did occur of the AN, and a lessening of inflammation of the nerves.  I am fearful that if I don't do something soon, this will of course progress.  On the other hand, I'm feeling mostly good, and don't want to make the call to schedule my GK.  So I have the devil on one shoulder right now.  Jim - I really, really enjoy reading your stuff.  You are a great writer!  By the way, Mayo can schedule me for Oct 2nd........             Joey
Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

MAlegant

  • Hero Member
  • *****
  • Posts: 1295
  • 50th birthday party pic
Re: GK probably - Rochester, MN
« Reply #5 on: August 14, 2008, 12:29:16 pm »
Hi Joey,
The rule of thumb is the smaller the AN the better.  It's what makes you a good candidate for GK.  My AN was too big for GK so surgery was my only option.  Many folks on this site that have suffered hearing loss have managed to make allowances (BAHA implant and so on), and have also resumed their lives, both personal and professional.

It's interesting that you mention "what would you do?"  I asked that of all three docs that I spoke to and they all answered immediately that they would have surgery. I think this had to do with the size of my AN and the rather suspicious center of the tumor.  Most tumors appear as an all white blob on the MRI.  It turned out that the center of my tumor contained the hearing and facial nerves so radiation would not have been a good thing. 

Hesitation on the part of your doctors may just be because the various approaches have similar outcomes.  By the way, I have some hearing loss (very little) and they will test it in three months.  I have the same apprehension that you do; if I can't hear, I can't do my job, so we'll see what happens when I return to work on September 15.  I think I will get very good at positioning myself so that people are mostly speaking into my left ear.

Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: GK probably - Rochester, MN
« Reply #6 on: August 14, 2008, 05:14:47 pm »
Joey:

Thanks for the compliment.  I like your writing, too.  :)

I'll chime in here to agree that the sooner you address your AN, the better.  To my (non-physicians) knowledge, the smaller the tumor and the better your hearing pre-treatment, the better the chances of preserving it.  The reality remains that nothing can be guaranteed.  Doctors can only look at past similar cases and their outcomes and make an educated guess on hearing preservation. 

Although, like others here, I had no option but surgery (followed by FSR), had circumstances made it possible, I would have opted for radiation over surgery.  You have that option and I would concur with your apparent decision to go with the tried-and-true Gammaknife treatment.  I would also urge you not to procrastinate, for obvious reasons.  Give that little devil the boot!

Wishing you good decisions and the courage to make them - as well as better days.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

mk

  • Hero Member
  • *****
  • Posts: 968
Re: GK probably - Rochester, MN
« Reply #7 on: August 14, 2008, 07:25:09 pm »
Joey,

I will agree with Jim that it is not good to procrastinate. Of course, at this size you don't need to do anything hastily, ANs typically grow slowly and you should take the time to do your research and think about your treatment options, so that you can feel confortable with your decision. That being said I understand that the sudden hearing loss you had compels you to seek treatment sooner rather than later, this is how I felt too after my hearing loss. It may not be a bad idea to schedule another MRI in a few months time, just to get an idea about the rate of growth.

Based on all the stories that I have read on this forum, "feeling good" is not a good reason to avoid treatment. The odd thing about ANs is that very commonly, people who have the smallest ones are the ones who have more severe symptoms (hearing loss, vertigo, fullness in the ear, tinnitus). This is because when the AN grows inside the internal auditory canal, where the space is very restricted, the symptoms are very noticeable, so that early diagnosis is possible.

On the other hand, large ANs, that grow outside the IAC on the CP angle, often go unnoticed, and they can grow quite big. Lots of us with bigger ANs have experienced minimal symptoms. But this is not a good reason not to seek treatment, as the AN eventually compresses brain structures like the brain stem. In that sense it seems like you are one of the "lucky" ones, since you don't have very severe symptoms, but the ones that you did have led to you an early diagnosis, while the AN is still quite small and you have all treatment options available to you.

Generally, based on the statistics there are less chances of nerve damage and other complications with radiation than with surgery (including damage to the hearing nerve), but different people have different considerations (for example they feel more confortable knowing the AN has been removed for good) this is why the doctors will not give you an answer as to what "they would chose". It is a personal decision and every person has a different perspective on what treatment would be best for them.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Joey

  • Jr. Member
  • **
  • Posts: 57
  • Change could be right around the corner.
Re: GK probably - Rochester, MN
« Reply #8 on: August 18, 2008, 08:41:47 am »
 8)  Hi Everyone - Just wanted to let you know that I have my "final answer"!  I have my GK scheduled at Mayo for October 2nd.  October 1st I will go down and meet with a variety of people and probably have another hearing test, too.  You all have played an important role in helping me make this decision, which I feel totally good about, so thanks and prayers go to everybody here.  I'll get the date on the calendar (and we'll see how smart I are about that!)  I am calm and collected right now but I'm sure that is subject to change.  Have a good week and I'll be checking in.  Regards, Joey
Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: GK probably - Rochester, MN
« Reply #9 on: August 18, 2008, 08:44:12 am »
Congratulations, Joey, you're in good hands at Mayo, you will do great.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Joey

  • Jr. Member
  • **
  • Posts: 57
  • Change could be right around the corner.
Re: GK probably - Rochester, MN
« Reply #10 on: August 18, 2008, 11:36:29 am »
Thanks Steve, and again, my confidence has certainly risen since finding all of you - but I have to ask - are you really a knitter?  For serious?  I was wondering if I would be "allowed" to take my knitting to my GK procedure, if I'm not too hampered by an IV or some staff member telling me no!    - Joey
Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

MAlegant

  • Hero Member
  • *****
  • Posts: 1295
  • 50th birthday party pic
Re: GK probably - Rochester, MN
« Reply #11 on: August 18, 2008, 11:38:55 am »
Yes, Steve, I have wondered that myself.  Are you a knitter?  Seriously?
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: GK probably - Rochester, MN
« Reply #12 on: August 18, 2008, 04:10:51 pm »
Yes, Steve, I have wondered that myself.  Are you a knitter?  Seriously?

Marci:

Steve jamais prendre trop au sérieux.  Il aime les gens enfant. 

Jim (lêtre aux prises aveca langue française)
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

MAlegant

  • Hero Member
  • *****
  • Posts: 1295
  • 50th birthday party pic
Re: GK probably - Rochester, MN
« Reply #13 on: August 18, 2008, 04:28:34 pm »
Jim,
Pas de probleme--Steve est adorable.
Salut,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: GK probably - Rochester, MN
« Reply #14 on: August 21, 2008, 11:01:16 pm »
According to Babelfish:

Jim: Steve never to take too much with the serious one. He loves child people.

Marci: No the problem--Steve is adorable.

Steve: Merci - je pense. Je ne suis pas un tricoteur.

;D
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.