Author Topic: AN Newbie in AL  (Read 7885 times)

windy

  • Full Member
  • ***
  • Posts: 165
AN Newbie in AL
« on: June 16, 2008, 02:13:27 pm »
I have been recently diagnosed with a possible AN (9mm x 11mm, with description later stating 1cm) per my MRI of last week.  Conclusively, the report stated the "findings were conclusive with acoustic neuroma or possibly a meningioma".

I recently lost partial hearing in my ear, as of three weeks ago.  My ENT physician acted quickly in regard to the hearing loss.  He did one round of a prednisone dose pak and after no improvement, I was sent for a MRI.  He called me the next day to report the findings.  I live one hour from Birmingham, AL.  He suggested seeing Dr. Markert at UAB Kirklin for my possible options of surgery or GK.  He stated with the size of mine, he tended to lean toward GK, but I could further discuss the issues.

I am having pain in my right ear now and some on the right back side of my throat.  When I first lost the hearing, I did not.  Now, I do.  I do not know if that is significant or not.  The ENT physician stated my case was "not an emergency".  Am I overreacting to thinking it is necessary to act quickly?  I want to make the best physician choice and the best treatment choice.

I would love some input from others with experience.  I am just starting my journey.  Any advice would be greatly helpfu.  Thank you in advance!

 
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

cindyj

  • Hero Member
  • *****
  • Posts: 1434
Re: AN Newbie in AL
« Reply #1 on: June 16, 2008, 02:58:44 pm »
Hi Windy,

Just wanted to welcome you to the site - I will let others here with much more expertise and experience give you the details you are probably looking for.  But, I can tell you that AN's are usually NOT an emergency.  Yet, we all know just how you feel in wanting to quickly learn about it and seek out the best possible medical advice and treatment.  I am a relative newbie myself being just diagnosed in February with an AN similar in size to yours.  I immediately set up appointments w/ several different docs here in Atlanta and started the quest to make a treatment desicsion.  Well, here it is June and I have not made a decision and feel "relatively" calm about my indecision.  Try to take a breath and read what others say here, ask questions and know that everyone here really does want to help in any way they can.

Take care - glad you found us - ask away!

Cindy

rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: AN Newbie in AL
« Reply #2 on: June 16, 2008, 03:19:33 pm »
HI Cindy-

Well, if it helps - everyone on this board understands exactly how you feel! 

You will hear this from lots of other people - but I'll say it anyway...

Usually ANs are very slow growing, so your doctor is probably correct that you have time.  I would also take encouragement from the fact that he thinks you will have treatment options (microsurgery versus radiosurgery). 

You should try to talk to several different doctors who specialize in treatment of ANs.  My personal "benchmark" was that I wanted a doctor who treated at least 50 ANs per year and who had been doing it for at least 5 years.  From talking to others ANers, I have learned that outcomes can vary depending on the skill and experience of the surgeon/radiologist. 

If you can get extra copies of your MRI, it is worth it to send a copy to House Ear Clinic in LA - they will do a free telephone consultation with you (the only caveat here is that House does only surgery, so keep that in mind).  Here is their main website:

http://www.houseearclinic.com/

You may also want to go to the cyberknife patient forum.  You can post questions and their doctors will reply - they are extremely helpful and "user friendly."

http://www.cyberknifesupport.org/forum/

I also suggest you take a look at MaryBKAriz recent post about her cyber knife procedure - she gives an extremely detailed account of her recent treatment.  It is a fascinating journey and Mary does a wondeful job in telling it.  You can find her posts on this forum, under Radiation/Radiosurgery.

And, certainly, if you want to talk about surgery, I am very willing to talk - just send me a PM with your phone number and I can give you a call - or you can call me.  You'll find lots of other peeople here who are also very willing to talk and share experiences.

I'd tell you not to be afraid, but in my experience that is kind of pointless advice - what I will say is that you've found a place to ask questions, share fears, vent - whatever you need.  And, although it may not seem possible, everythign will be okay in the end.

Debbi - 7 weeks (almost) post surgery
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: AN Newbie in AL
« Reply #3 on: June 16, 2008, 03:29:50 pm »
Hi Windy~
Welcome - not a great way to meet new people, but a GREAT group none the less!  Everyone here wants to help YOU find the best possible treatment options for you - please use or experiences, answers, and previous questions to help you make the best decision you can!  Depending on the size of your AN, there is no immediate hurry to "take care of it" - typically they are VERY slow growing.  Take your time to find the best treatment option for you and the Dr. that you feel comfortable with.  I had surgery 12 years ago and have a VERY full and active life now, despite having quite a few "effects" - I'd LOVE to chat with you  over the phone - if you would like that, just send me a PM (on left of screen)!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: AN Newbie in AL
« Reply #4 on: June 16, 2008, 03:42:19 pm »
Hi Windy! I was diognosed almost a year ago with about the same size AN as you. I decided to wait and watch have had one mri which was stable. In the mean time I`ve lined up all my options and will play it the way it treats me mri to mri along with how symptoms progress. So far so good. Just hope to let you know unless dr`s say there is a need to act fast take your time to educate yourself. This board is a good way to start. Good Luck, + god Bless! Mickey

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: AN Newbie in AL
« Reply #5 on: June 16, 2008, 04:33:52 pm »
Hi, Windy:

I regret you've been diagnosed with an Acoustic Neuroma but welcome to the forum.

Your AN is relatively small and very likely treatable with radiation, as you'll probably soon learn.  I concur with your ENT and other posters that there is no need for undue haste.  Don't allow yourself to procrastinate making a treatment choice but don't allow any doctor to hurry you with scare stories, either.  Take the necessary time to become an informed AN patient (this site is a gold mine of information) and try to remain focussed and calm.  What you have is benign and treatable.  Use every resource available to you for your 'education' and please feel free to ask any question of this forum.  You are not alone.  While - with a very few exceptions -  we're not doctors and cannot offer actual medical advice, we do care and can help.   

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.

lholl36233

  • Full Member
  • ***
  • Posts: 247
Re: AN Newbie in AL
« Reply #6 on: June 16, 2008, 04:47:45 pm »
Hi Windy,

My ENT put me on prednisone on 5/2 after my hearing test showed moderate to severe hearing loss.  I had the first MRI 5/7.  When I went back 5/23, he asked if the hearing had improved.  I thought it did.  He got sidetracked when he saw the AN on the MRI which the radiologist had called normal.

Maybe he should have sent me for additional hearing tests?  I don't know?

I am currently waiting for a 6/27 consulation with the surgeon after he sees my CT scan.

Good luck.

Laura
Proton Radiation for my hemangioma at MGH December 2009.  Hearing has improved.  Doing great!

windy

  • Full Member
  • ***
  • Posts: 165
Re: AN Newbie in AL
« Reply #7 on: June 16, 2008, 07:16:30 pm »
I am so glad I found this site.  Everyone is so helpful.  I am going to really research my options and I will definitely be asking questions in the future.

Do you think I should consider going outside of the UAB Birmingham, AL area?  I'm concerned about the high cost that would be involved in seeking treatment in another state.  However, having someone skilled is extremely important, it seems.  I am confused.
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: AN Newbie in AL
« Reply #8 on: June 16, 2008, 08:07:28 pm »
Conclusively, the report stated the "findings were conclusive with acoustic neuroma or possibly a meningioma".

Windy -

Welcome to the forum.

This is exactly what my report said.  Turns out I had the acoustic neuroma  :)  I had mine surgically removed about a year ago.  The size of your AN will most likely give you the option of radiation or surgery.  You can probably even watch and wait for a while if you want to.

I don't know any docs from Alabama, but I do know some excellent ones in Illinois.

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

macintosh

  • Full Member
  • ***
  • Posts: 117
Re: AN Newbie in AL
« Reply #9 on: June 16, 2008, 09:27:40 pm »
Hello Windy--

Under the "Physicians" section of this website, several people speak highly of a Dr. Guthrie at UAB. You could write directly to them for first hand info.

At this link at the U. of Pittsburgh, you will see that when neurosurgeons are asked what they would do if they had an AN, many of them are willing to defer treatment longer than you would think. As several people have already suggested in this thread, this is a very slow developing condition, and with a small AN you have plenty of time to research your options.

http://www.acousticneuroma.neurosurgery.pitt.edu/docsurvey.html

You can ask the people at UAB for their treatment success rates, and if you don't like the answer, you can look further. But this is a very treatable condition, so don't go crazy worrying about it.

Mac


leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: AN Newbie in AL
« Reply #10 on: June 16, 2008, 11:08:53 pm »
Windy -

I forgot to mention earlier that if you haven't already, you should contact the ANA.  They can send you some literature about acoustic neuromas and the treatment options available.  The information is written in very basic terms and IMO is a very valuable resource for AN patients.

In addition, the ANA can also send you a WTT (willing to talk) list.  This list has the names, phone numbers and email addresses of AN patients who are willing to talk about their experience and offer advice and support.  Of course, this forum is a wonderful resource, but there are people on the WTT list who don't access the forum and there just might be someone in Alabama who can recommend a doctor to you.

Best of luck,

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

windy

  • Full Member
  • ***
  • Posts: 165
Re: AN Newbie in AL
« Reply #11 on: June 21, 2008, 09:59:13 pm »
Hi All,

I have been through a whirlwind of research and one visit with a neurosurgeon at UAB in AL.  The appointment was set up by a local neurosurgeon.  I had no prior knowledge of him when I went to him.  He is the Director of Neurosurgery at UAB.  He suggested GK to me.  I have a systemic disease, as well as other auto-immune problems, an eye disease, and drug reactions to most medicine I take.  With my history of health, he felt that surgery would be much more complicated for me.  Also, he stated my AN was small, so Gk looked promising for me.  I agree with him. 

I have decided to go with GK.  The jury is still out on who I am going to use for the GK procedure.  They have had a GK facility in AL since the 90's.  Dr. Guthrie is the Director of Gamma Knife at UAB.  Others have used him.  However, I am not under his care, as I was referred to one of Dr. Guthrie's partners.

The doctor I saw told me he does an average of 50 - 75 GK treatments per year.  He gave me some grim con's to both surgery and GK.  He stated, "I have had people come off of the table after GK and have lost all their hearing."  Of course, he pointed out I could have facial paralysis, balance issues, inability to close my eye, seizures, etc.. after the GK procedure.  I guess he was just being honest, but I certainly did not feel better.  Also, I have no idea of his background in regard to AN.  He did state my ear pain was not related to an AN.  He stated "you have no pain with an acoustic neuroma".  He told me to go back to my ENT because I probably had an infection.  No, I don't because I just went to the ENT doctor less than two weeks ago and he told me I had no infection.  That statement worried me because I know it is not true.  Also, I had sharp pains in my head at the end of the week which were quite unusual.  When I called and left his assistant a message I received no call back.  Secondly, today I received an appointment in the mail for next month.  I also found this strange as I had not set the appointment up or even discussed the appt.  Third, they scheduled my GK treatment when I was there (I thought I might cancel the appt. if I decided against using them).  I told them I would not be able to make that date and was told by the asst. that she would change the appt.  I have no idea to what date it was changed as no one ever called me.  I'm slightly afraid things will not be handled well if I decide to stay with this physician.   

I'm not sure of my choice on who to go with for the GK procedure.  I don't know if I should rely on someone here or maybe just fly out to Pittsburgh for GK.  They are quite knowledgeable.  What do you think?  I am so confused!!!


 
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: AN Newbie in AL
« Reply #12 on: June 21, 2008, 10:37:37 pm »
Windy -

From all that you have said, I think your decision to have GK is a good decision.

As far as the doctor goes, if it were me, I'd talk to another doctor who does GK before deciding.  Some of the things that are concerning you about this doctor, quite frankly, would concern me also.

Just my opinion,

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

macintosh

  • Full Member
  • ***
  • Posts: 117
Re: AN Newbie in AL
« Reply #13 on: June 21, 2008, 11:54:08 pm »

Hello Windy--

I'm definitely going to agree with Jan on this. If you have questions about a doctor now, and your insurance will cover going elsewhere, I would say go elsewhere. You want someone you can rely on if there are followup issues. There may not be any issues, but just in case.

Pitt is very experienced, and I wouldn't say anything against them. Emory is closer and is also a major center for AN treatment, and a number of people in this forum have reported good experiences there.

You have plenty of time to look into things, so don't panic. You'll end up getting this done right if you take your time.

Mac

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: AN Newbie in AL
« Reply #14 on: June 22, 2008, 12:16:42 am »
Hi Windy,

Pittsburgh would be a great choice, if you can swing it. Another option would be to try and get Dr. Guthrie himself. If you talk to your ENT or neurosurgeon again, and explain  that you didn't like the 'partner', they may be able to get you in to see him. Just tell them what you told us.

Unfortunately, it is possible to be a good radiation oncologist and have dreadful people skills at the same time. If he was being honest about possible side effects, he might at least have said "possible, but not common." He is not really qualified to diagnose your ear pain; that is what having an ENT is for. An oncologist treats all kinds of tumors, and is not really a specialist in any of them - well, some of the good ones are, but it is not what their training focuses on. He does not seem to have the best office staff either.

As Mac said, you have time to get this worked out right, so keep plugging away until you are happy with the result.

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.

 


anything