Author Topic: What do do?  (Read 9801 times)

Tami

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Re: What do do?
« Reply #15 on: November 30, 2009, 04:28:28 pm »
I am new, I just found the site today, I found out on Nov 11th that I have a 2cm AN, I don't know what to do, I am sacred. Anyone from Kansas and know of Dr. Thomas Kryzer?  Thanks

Jim Scott

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Re: What do do?
« Reply #16 on: November 30, 2009, 04:44:40 pm »
Hi, Tami, and welcome.

O.K.  Take a deep breath and try to regain your focus.  You've been diagnosed with a small, benign (non-malignant) tumor that has to be addressed but that many people have dealt with before you.  Some of them will reply to you, here.  Take their comments, suggestions and advice seriously as they are communicating with you out of concern and compassion and they know what you're going through because they've been there.  That includes me.  I was diagnosed with a 4.5 cm AN, underwent surgery then radiation and came through it all in pretty good shape, and I was very likely a lot older than you are.  As you'll soon learn, I'm not the only one that has had this kind of experience.

With a 'medium sized' 2 cm AN, you'll probably have the option of radiation treatment, surgery or, perhaps, simple observation via semi-annual MRI scans.  You're not going to die or become an invalid and in a few years, this will likely seem more like a dream than a reality.  For now, it's a very real situation but one that doesn't have to be so scary. We'll help you get through this in whatever way we can.  We've done it many times before with folks from all over the country and even a few living in other nations.  

Consider yourself a part of a very extended but caring 'family'-  and please ask any question at any time and consider these forums as a resource.  You'll be O.K.  :)

Jim
« Last Edit: November 30, 2009, 05:13:10 pm by Jim Scott »
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.

Kaybo

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Re: What do do?
« Reply #17 on: November 30, 2009, 04:54:11 pm »
Hi Tami~
What part of Kansas are you in?  I am pretty close to Kansas!  I know that this can be a super scary thing, but know that you WILL get thru this.  I would be more than happy to talk with you if you want to PM me your number.

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!

CHD63

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Re: What do do?
« Reply #18 on: November 30, 2009, 05:10:37 pm »
Tami .....

Adding my welcome here to this group of caring and supportive new friends!  You definitely have found the right place for help as you walk this journey.

Take a deep breath and ask any and all questions ..... you are among friends here ..... no question is deemed unnecessary or silly here.

I am not from Kansas but we do have some active members who are.  Hopefully they will chime in here soon.

Most of us will attest to the fact that there are many good AN treatment doctors in this country ..... first in importance (in my opinion) is that the doctor you settle on has had MUCH experience with treating the rather rare acoustic neuroma (vestibular schwannoma).  You want a doctor who has seen many ANs, not just a few in the course of his/her practice.

Looking forward to hearing more from you.

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

leapyrtwins

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Re: What do do?
« Reply #19 on: November 30, 2009, 10:00:40 pm »
Tami -

welcome to the forum.  The size of your AN should give you the option of surgery or radiation. 

I recommend contacting the ANA for their informational brochures - they are very educational and straight forward. 

I don't know any doctors in Kansas, but if you want to travel to Illinois, I know some great ones!

Please don't hesitate to ask us anything; that's what we're here for. 

Best,

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

LisaP

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Re: What do do?
« Reply #20 on: December 02, 2009, 06:17:03 am »
Hi Tami and mnastasi,

First of all welcome. Making a decision is hard to do.  I also am Watching and Waiting for a year and a half now dx in March of 08.  I have done allot of reading and research also and still don't know what I am going to do.   Just remember that you have to make the decision that is best for you.   I hope to take my own advise when and if my time comes.

Keep us posted, it is very normal to be nervous and confused.

Best wishes

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Mei Mei

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Re: What do do?
« Reply #21 on: December 04, 2009, 04:44:28 am »
Hi Mnastasi,
I was all set with my Jan 12th surgery date as Johns Hopkins and then a friend of a friend from Delaware called last night on a lengthy phone call with all the benefits of radiation at the University of Pittsburgh.  He made me feel so scared of my surgery that I was so ready for.  I'll call tomorrow for a third opinion at the Univ. of MD to double check, but I trust my doc at Hopkins and he said the position of my AN was such that it would cause a stroke.  NOT a good thing.  Even radiation can't move the position of a tumor is my common sense to this one.   You have to go with your gut and trust your Doc.   Like they all said we're not 4 anymore and these ANs really are grown up stuff.   Hang in there with your decision.   You've found a great community!!!!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

leapyrtwins

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Re: What do do?
« Reply #22 on: December 04, 2009, 03:15:49 pm »
Mei Mei -

did I read your reply correctly?  Have you decided against surgery?

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

Mei Mei

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Re: What do do?
« Reply #23 on: December 04, 2009, 07:37:45 pm »
No, this man wrote to me a lenthy letter and really made me nervous and I couldn't sleep all night about it so I called me ENT this morning that first diagnosed me and he calmed me down and said the man's AN is different than my AN and that I have to take the advice of my Docs because they are looking at my scans and records.  This man went to Germany for the Gamma Knife and is encouraging me to send my records there for a free second opinion.  I really can't pick up and go to Hanover, Germany with all my responsibilities here, my95 year old father.   This website he sent me for Pittsburg also looked interesting and showed them to be leaders in radiation, but I have a small tumor and am symptomatic on my face and feel dizzy at times and that's not good.  I really think radiation is not agressive enough for me and with a small tumor the chances are the outcome will be better.  This man is a very strong supporter of the radiation and he's making me nervous.  I've got to sleep well tonight.

I just won't feel at peace till this is all over.   Talk to you later and thanks for your reply.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

CHD63

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Re: What do do?
« Reply #24 on: December 04, 2009, 08:36:14 pm »
Mei Mei .....

Somehow I missed all of your posts until just now ..... so sorry ..... and a very belated welcome!

I read your posts, but I did not take time to read all of the other answers.  Just wanted to add regarding the "friend" who is putting pressure on you to strongly consider radiation ..... this is your decision and no one should try to sway you to one treatment or another, not friends (however well-meaning), not medical people, no one.  You have done your homework and you are smart ..... trust yourself and you will know what is right for you.

By the way, my daughter is an ESOL teacher in Atlanta (currently a stay-at-home mom for a few years) so she especially can empathize with your concerns about being out of the classroom for a couple of months.  Many of these students become very attached to their life-line to English ..... but they will do fine and so will you.

Thoughts and prayers that you will trust yourself and relax about your decision.

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

sgerrard

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Re: What do do?
« Reply #25 on: December 05, 2009, 12:06:34 am »
Mei Mei,

As a radiation patient myself, I am all in favor of radiation treatment when it fits the AN and the patient. But it is silly to suggest that surgery is not a good option too. Lots of people have surgery and plenty of them do quite well. There are risks and benefits either way. I think it should be viewed as a choice between two good options for treatment, not as a good option versus a bad option.

So tell your "friend of a friend" to take a hike.  ;)

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.

Mei Mei

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Re: What do do?
« Reply #26 on: December 05, 2009, 06:42:11 am »
Dear True Friends,
I will do that.  I was so hyper with all this information last night, but finally settled down and got to sleep.  The letter came from the neurosurgeon about the date of surgery and warnings of what not to do and wear, etc.  The reality is setting in.   I'm getting ready for the big day.  I think I'll go out today and prepare for Christmas;  sounds like a good diversion.
Talk to you later...Friends!!!!
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

 


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