Author Topic: Newly diagnosed – frightened, depressed and anxious  (Read 18583 times)

Captain Deb

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #45 on: February 21, 2008, 02:29:12 pm »
Surgery was indeed NOT a cakewalk for me, and I went to one of the best places in the country--House Ear Clinic. 10 days post op I had my first suicide migraine. At 6 months post-op I was having them every day and this continued for almost 2 1/2 years.  Thousands of $ in medical bills later, I'm fighting with the gov't for disability because I still have headache issues and can't work most of the time due to exertion headaches, still get the suicide headaches about 2-3 times a month, take about 6 different meds,  and my life plans have been severely altered.

However, you can't prevent what you can't predict. I had top notch surgeons and great mediacal care.  Just bad luck. I was a very active and healthy 50 year old pre-surgery--an avid hiker, runner, and sailor. Today I can't run 2 steps without my head feeling like it's going to explode. I don't mean to scare anyone out of surgery, I'm just explaining my reality.

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

edhayes

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #46 on: February 23, 2008, 06:14:22 pm »
Has anyone used Georg Noren, MD, PhD in Rhode Island Hospital?
I was thinking about going there for a consultation.

calimama

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #47 on: March 09, 2008, 11:39:18 am »
Hi Edhayes!

What does it mean that "the differential also includes mengi..."?
I ask because I also an AN that is not located in the IAC but has grown to extend there.
I was sent for MRI to "rule out an AN" (well i didnt i surprise them!). Now diagnosed with an AN... is there a chance it could be a mengi? I thought that this was tumor "in" the brain.
Sorry, i am new to all this!
I was also interested that you had info about the AN being tangled with certain nerves. I didnt get this kind of detail. Is this something that they can tell from MRI? I assume this would be good to know as would make it easier for the experts to predict how difficult treatment might be and better predict complications.

thoughts?
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

leapyrtwins

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #48 on: March 09, 2008, 05:56:05 pm »
Calimama -

I'm not sure what the answer is to the first half of your question; hopefully someone else will.

As far as nerves go, generally your MRI report will indicate the location of your AN.  For example, in my case, my MRI report said my AN was in my IAC and it was pressing on the 7th and 8th cranial nerves.  The report did not mention whether the nerves were tangled or not, but post op I was told that my AN had wrapped itself around my hearing nerve.

I'm not sure if it was wrapped around the hearing nerve at the time of my MRI and no one thought to mention it, or if it wasn't evident to anyone that it was wrapped around the hearing nerve until they opened my head for my surgery.  It could have been either way since my AN grew very rapidly between my MRI and my 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

calimama

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #49 on: March 09, 2008, 07:58:12 pm »
Jan...
Thanks for the explanation. I wish i knew more about what the implications are based on my AN (size and location). I guess this will come when i meet with the surgeon and radioguys, but i will keep digging in the meantime.

cheers!
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

irina

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #50 on: May 09, 2008, 07:53:31 pm »
I was just diagnosed with an acoustic neuroma after I had a MRI and IAC with gadolinium.
My chief complaints, which lead me to having an MRI was dizziness, headache and tinnitus.
The MRI showed “There is a extraaxial enhancing mass at the right CP angle extending into the right internal auditory canal.  This is inseparable from the right 7th and 8th nerve complexes.  It measures 1.3cm in width and 0.6cm in diameter.  It’s appearance is consistent with that of an acoustic schwannoma although the differential also includes a meningioma.â€?

I work in a large teaching hospital and my gut feeling is that they prefer surgery over non-surgical approaches such as radiosurgery.  I watched several videos of actual surgery and an excellent video from the University of Pittsburgh explaining the radiosurgery.

Radiosurgery seems  like a great option, no invasive anything, much faster recovery and less post procedure side effects.

Anyone have any idea or thoughts.

Thanks so much

Hi, guys

Today i was diagnozed with aucostic schwannoma. i am scared, very scared. Please someone talk to me

Kaybo

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #51 on: May 09, 2008, 08:03:52 pm »
Hi Irina~
So sorry that you have been diagnosed with an Acoustic Neuroma (AN), but I think you will find a LOT of support here.  It is all very overwhelming at first, but just take a few deep breaths and we will get through this TOGETHER.  I would love to chat with you, if you would like -- you can PM (icon on left) and give me your number - if you are in the US, I have unlimited long distance.  I can talk right now if you need to.  I had surgery 12 years ago and I have a great life now!!  Life doesn't stop with an AN!!

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!

leapyrtwins

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #52 on: May 09, 2008, 09:51:11 pm »
Irina -

first of all, it's very normal to be scared when you are diagnosed with an acoustic neuroma; we know exactly what you are going through.  No one really thinks that they will have a tumor growing inside their inner ear canal - I know I certainly never expected something like that.  I don't know how your AN was discovered, but if you were like me you probably just thought you had wax in your ear, that your doctor would remove it, and life would be back to normal.  But my doctor saw nothing when he looked into my ear, so he sent me for an MRI that showed I had a tumor.  Quite shocking  :o

One of the good things about acoustic neuromas is that they are very rarely cancerous.  Another good thing is that they typically grow very slowly, which gives patients time to decide on a treatment option.  Depending on the size of our AN, you may have the option of watching & waiting, surgery, and/or radiation.

If you haven't already, I'd like to suggest you contact the ANA and ask them to send you some of their literature.  It's very helpful in explaining what an acoustic neuroma is, what the treatment options are, and the side-effects of each treatment.  The ANA also stresses that you need to find someone who has experience in treating acoustic neuromas and I couldn't agree more.  On the first page of this website, there is a list of medical resources that might be helpful to you.

In addition, as K said, you can rely on the members of this forum to answer questions you may have and to support you in your AN journey.

It would help us to help you if you tell us the size of your AN and where you are located.  There are AN patients from all over on this forum - USA, UK, Australia, Canada, Germany, etc - and someone should be able to suggest a doctor in your area if that is something you are interested in.

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

ppearl214

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #53 on: May 10, 2008, 04:45:37 am »


It would help us to help you if you tell us the size of your AN and where you are located.  There are AN patients from all over on this forum - USA, UK, Australia, Canada, Germany, etc - and someone should be able to suggest a doctor in your area if that is something you are interested in.


Hi Irina,

Welcome. Pls share with us what the docs have told you so we can be of help.  I know that with the initial diagnosis, things can be overwhelming, but we are here to help.

What size is the AN? Where is it located? Where are you located?

Here to help.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kate B

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #54 on: May 10, 2008, 05:46:03 am »
Hi, guys

Today i was diagnozed with aucostic schwannoma. i am scared, very scared. Please someone talk to me


Irina,

It is good you found this site.  A diagnosis of an acoustic tumor is scary at first.   You will find that it is a very treatable condition. 

Where do you live? 

Kate
« Last Edit: May 10, 2008, 06:43:03 am by ppearl214 »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

irina

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #55 on: May 10, 2008, 01:01:30 pm »
 Hello, everyone and thank you!!!
 15mmx16mmx24mm in the left ear
I am in NY.

MaryBKAriz

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #56 on: May 10, 2008, 04:53:28 pm »
Hi Irina,

I am fairly newly, too. I was diagnosed March 24th. When I read it is considered a brain tumor, it scared me more. However, after the initial shock I soon felt a lot less firghtened and I am very optimistic about my future. I think you will feel the same way.

I am having the Cyberknife treatment June 2, 3 and 4th. I did a LOT of research to get to this point. My doctor said I needed to understand all my options. He really wanted me to understand this and was very glad I found this site. My doctor also is a specialist who has done many, many ANs. He does the 3 microsurgery treatment plans as well as the Gamma Knife and CyberKnife. He also talked to me at some length about the watch and wait approach. I would recommend you find a doctor who specializes in ANs AND does various treatment types.  That way you can feel you have really looked at all options with a person that really understands each one and the pros and cons associated with each. Of course, no 2 ANs are identical, nor are the patients. Therefore, the treatment you and your physicians choose for you may differ from someone elses. We will support you whatever you decide.

Hang in there! If you need to talk, you can PM me.

Take care,

Mary

.The people on this site are fantastic!!!!!!!! They have already become my family. I live in AZ so I can't help you with Dr.s nearby
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

jerseygirl

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #57 on: May 10, 2008, 07:28:00 pm »
Irina,

Is NYC close to you? NY can be a big place. If NYC is close, there are many surgeons and radiation specialists who have many years of experience of treating AN. Search and check for recommendations on this site. Best of luck in your search.

                   Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

lacey7

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #58 on: May 11, 2008, 12:09:48 am »
I am so glad you found this site.  I was diagnosed in March, myself....and remember how scared I was....
There are quite a few options you have......and I don't think that helps much at first....until you read up on all of them.
The key is finding the right doctor, who has done ALOT of surgeries, and also doctors that are very experienced in all the other options.
Like someone said, take a deep breath, slow down, and start reading.  At least they are not maligant.  It could be worse.....whether you believe that or not, right now.
This is a great group, and someone is ALWAYS here for you.
They are the best at offering support, and prayer if you want it.
We will be here with you from the start for as long as you want. 
Please take care, and don't assume the worst.  Get knowledgeable answers.
You will be fine, whichever way you decide to go.
Lacey
Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.

cmp

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Re: Newly diagnosed – frightened, depressed and anxious
« Reply #59 on: May 11, 2008, 07:37:19 am »
Hi Irina,

So glad you found this site, though of course I'm very sorry you had a need for it. As you can see, there are many people here at various stages of their AN journey to share resources and stories and offer support.

As frightening and overwhelming as the diagnosis is at first, the definite upside is that ANs are typically benign and very very slow growing, so you have time to gather lots of information and really research your options. I was diagnosed myself in late February, and though my initial reaction was one of disbelief and distress, through consultations with doctors and this wonderful forum, am feeling more and more "ready" to confront this challenge (my surgery is scheduled for June 2).

Good luck and keep us posted--we'll be here!
5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

 


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