What Should I Do Now? - newly diagnosed

[shanne]

Dear All,

Im  Shanne, 26 , from Singapore ( Asia ) and had been recently diagnosed with Acoustic Neuroma ( 2.9cm x 2.3cm ).
This started from my business trip to China last Dec 2004. I lost my balance & suffered from severe vomitting, and was admitted to a local hospital A&E. Local doctors could not diagnose anything wrong with me, despite doing all blood tests, urine test & a CT scan. I was discharged on the same day, and i flew home the very next day.
Back in Singapore, i visited a GP for my condition, and was given medication, no further investigations were arranged.
I soon recovered, and was living my life as normal with 2 weeks, and i continued on my work.

Just recently, i just came back from another business trip in China, just 3 days after im back, i suffered from a sudden blocked ear ( left ear ). I went to the same GP, and was told its minor & would heal with medication.
However, within the same day, i got severe headaches accompanied with bad nauseousness. The GP said the headache was not relevant to my blocked ear. I seeked his advice on my option to be referred to see a ENT doctor, however, the GP accused me of over-reacting. I was told to go to a hospital A&E if there are any emergencies.
A few days later, i had a very severe headache while at work, i was sent to a hospital A&E Department.
There, i was being referred to see a ENT doctor, and did a series of blood tests & MRI scan.

A week later, following my appointment with the ENT doctor for my test results, i was told i had Acoustic Neuroma.
Immediately, i was arranged to see a Neurosurgeon, and was being told the options i have.
I was told to make a decision soon on which method of surgery i would opt for.
Right now, i am in a dilemma on which option to choose.

From the internet, i saw a method named FSR, this method seemed to be a gentler method as compared to the Gamma Knife surgery. However, it seemed that this method is not available in Singapore.
Most hospitals only offers Microsurgery & Gamma Knife Surgery.
The neurosurgeon i met gave me the above 2 options.
1 week later, till today, i have not made a choice..
Right now, i am suffering 50% loss of hearing on my left ear, and min facial numbness on my left face.

I just got engaged this month ( June 2005 ), and i was diagnosed with Acoustic Neuroma 1 week after.
Im due for my wedding coming November 2005, but am unsure whether i should postpone it due to my health condition now. Life seemed to be falling apart since i learnt about my condition.. Im deeply depressed and very worried about my condition.

Can anyone advise me which options should i choose? Are there any other options besides the above mentioned methods?

Thank you very much.

Rgds,
Shanne

[GM]

Shanne,

I'm sorry that it took so long for your diagnosis and they hinted that you were over reacting.  But in a way this will help you in the long run, this is a condition that requires active involvement by the patient.  The Neurosurgeon is a surgeon that performs operations, Radiologists perform what are called radiosurgeries (although no actual cutting is involved).

Your choices are based upon tumor size, location, and aggravations (head aches, imbalance, etc..) aggravations are what usually cause us to act quickly because they are tough to deal with. Those with minor aggravations, or none at all (some find out they have a AN by an MRI for another reason) make the decision on what is called a "watch and wait approach" waiting for technology advances.  It seems that your Neurosurgeon wants to do surgery...remember...they are surgeons and normally will advise against radiation.  Also, Radiologists will advise against surgeons.  This is why I said that you have to have an active involvement here...welcome to the world of the AN. 

I too am engaged and am pressing on with my life and plans.  I found my AN after failing an annual hearing exam that was required for my job.  I lost the center band of hearing in my left ear.  After failing multiple retests, I was sent to an ENT who decided to have an MRI performed.  I expected something minor.  To my surprise the doctor came in with a surgeon and told me I had a 1.8cm AN and that I deeded surgery...I'd lose the hearing in my ear...described possible complications from surgery...wow was I floored!  I left without making a decision and did research and for me the Gamma Knife was a good approach as I had little aggravations at the time.  But, you have some serious ones, and may want to consider surgery for relief.  Your tumor may either be swelling in a cavity and pressing on nerves, or could be nudging against your brain stem.  It would be helpful to know this info from your ENT to make a decision from.  You need tumor overall size, and location.  Get a copy of the MRI if you can...I have all of mine on CD-ROM. 

I understand your fears..trust me.  But also trust me that after you do some research you'll understand this a bit better and can make a informed choice.  Know that these are non-cancerous tumors, and grow slowly.  Although your is causing you some complications and will probably need quicker actions on your part.  Others will also help you on this site that have been through similar stories.  We welcome you here and know that we will support you with info or prayers. 

Also look at the post scripts at the bottom of people’s postings on this site.  They usually state the size of their tumors and where they were treated.  You’ll see mine was 1.8cm and I was treated at the University if Virginia, along with a site link.

Gary

[Kim]

Hi, Shanne.  I, too, am sorry you learned of your tumor in a roundabout way.  It seems that brain tumors are not the first things that come to mind when some of these symptoms first appear.  My tumor was a little bigger than yours, yet my only noticeable symptoms were tinnitus and facial numbness.  For a month I thought I had pinched a nerve in my neck.  Oh well.

At this time of shock, fear, and confusion, it's unfortunate that we need to gather our wits about us like never before.  The more informed you are, the better off you will be.  Do lots of research, talk to a lot of very experienced AN doctors, and stay in contact with other patients.  For sizeable tumors, you will probably learn that surgery is your best, if not only, option.  Radio techniques are not proven past 10 years; also they tend to damage surrounding healthy tissue and make future surgery (if necessary) much more difficult.  Yet in some cases (smaller tumors) they are appropriate and successful.  If you don't like a doctor, find another.

I also continued on with life as close to normal as possible.  Your wedding plans may need a bit of flexing, but you are very lucky in that you have a partner who loves you and wants to be with you.  Your marriage is just being tested right off the bat, "in sickness and in health"!

Take a breath, and good luck!  Keep in touch with us.

[kristin]

hi from montana, usa!! wow! singapore...now that is a place i would love to visit!

i just wanted you to know that i was dx'd on dec 28th, 04 and did not make a decision until the end of feb 05. during that time i spent a lot of time online and researched all my posibilities. i was planning on having GK (after reading a whole bunch of horror surgery stories online) but a local ENT convinced me that middle fossa surgery would be a better choice for my age (29), size (8 mm x 5 mm), and location of tumor (superior vestibular nerve).i did eventually have middle fossa by dr derald brackmann at the house ear clinic in LA and am doing great with dry eye as the only side effect.  i guess my whole point is...take your time in picking the right method of treatment and doctor.

kristin

[dpericoni]

Kristen,

I, too, have a 5mm by 8mm tumor and have chosen Dr. Brackman. Good to hear the positive results. I first considered GK but at my age, 44 years old, I think middle fossa surgery is my best option.

Darlene

[shanne]

Dear All Kind Souls who responded to my topic,

It feels so warm that there are so many responses received from you good people out there, people whom we've not even met..
Just some updates on what i had gone through lately, im having some on & off piercing pain in my head on the location where my AN is.
And some slight facial numbness.. well, all such were come & go kinda symptoms thats hard to catch. I met a Neurologist ( Specialist ) yesterday, and after analysing on my case, he gave good chances of solving my problem, most important of all, he gave me the assurance at heart where i needed most. He's a renowned Neurologist who had been in practice for more than 15 years, and is the best Neurologist from a specialist hospital here in Singapre ( Mount Elizabeth Hospital ). He'd also handled more than 60 of such cases in his years of practice. Very well known for his reputation in the Neuro World in Singapore ( definitely very expensive).

He suggested a surgery ( Microsurgery ) instead of a Radiosurgery, considering my age ( im 26 ), my current health ( no other illnesses ), and my future.. In his opinion, the surgery option would be the most appropriate for me taking into considering all the other health factors.
He mentioned that such tumour could be caused by hormones, and considering i am going into pregnancy in my future, it would not be advisable to still have the tumour in my head. Pregnancy would cause active hormones in the body, and it might cause a relapse by then, and conditions will not be favourable if that happens. I dunno how true is this, but if this is true, i would be very concerned of my future.

On top of all, he mentioned that GK process would be a rather tedious one to go through considering emotional, psychological stress i would have to bear with the whole day. However surgery would take longer to heal, well, at least, it's a once & for all thing where you do not have to worry much for the rest of your life as compared to the radiosurgery where you still have the tumour in there.
Considering my age, i have a long way to go in my life, and surgery would be a better option.

However, all about surgery had been discussed with the doctors, but, i am still in a dilemma now, and i do not know what options to choose.
I know i have to make the decision, but i feel very lost..
Can anyone advise me & share your experience with me about AN treatments?

Thank you.

Wishing you Best of Health & Luck!

[Gabi]

Hi all,

I too am newly diagnosed -- yesterday, an am in SHOCK.  Maybe NF-2, but not sure yet.  My ENT is not a specialist with ANs and is sending me to a specialist.  I'm in VA BCH/Norfolk area of Virginia.  Does anyone have any info re: AN specialists/surgeons in this area or nearby (within 100 miles)?  Any info appreciated.

What I know so far is that AN is 1.8 CM on R side.  On left "very tiny focus of abnormal enhancement within the IAC at the fundus."   Could represent a tiny addiional neuroma versus nonspecific neuritis

The AN specialist can't see me until Aug 25th -- seems like too long from now, but what do you all think?

I am going out of country to see parents tomorrow Saturday -- so can't do anything immediately anyway, but would have liked to been able to see specialist in early August to plan treatment for mid to late August.

I'm a teacher by trade, but that's the least of my worries.  Also, am a BC survivor (7 years) so have had my share of surgeries, etc.

Just thrown for a loop with this new DX, but am grateful not a metastases of BC.  Have some hearing loss, early AM headache, some pressure on r side of face.

What do you all advise?  I echo what other newbies have said, Thank goodness for this board!!!

Help with info!  THANKS TO ALL!     

[GM]

Gabi,

I too live in the Hampton Roads area of Virginia, and if you'd like to do individual emails let me know, we can even talk on the phone if you'd like.  I have met with a surgery (Translab approach) patient that lives in Williamsburg, and I'm a Radiation patient (Gamma Knife).  We met for coffee at Starbucks.  Here is a VERY helpful site:  http://www.vahealthprovider.com/index.asp
It will tell you just about everything about your doctor (or one your considering), where they went to school, their speciality, where they practice, any papers that they've written...even if they've been sued!

Gary

[viejita]

I was diganosed in early may and am also in Hmptn Rds.( Norfolk)  I want to go with gamma knife but so far havn't found a participating provider or gotten an answer to the request for treatment from my ins.  I saw Dr. Stephanie Moody at the EVMS hearing and balance center.  She is very young but, she did a fellowship at house a couple of years ago.  She sent me for an MRI after my first visit with her and when she gave me the news, she also told me about radiation as a possible treatment.  She just arrived here in Jan and I guess she didn't know all the ins and outs of local ins.  I was all set to go to UVA for the GK and a week before going found that the ins wouldn't cover it there without special permission as they don't participate with my ins. ( optima).  Now, I have no idea of when, where or anything.  Very disheartening!

[GM]

What's the special permission that they need?  My suggestion would be to ask this question and find out why treatment at UVA would not be covered.  This is a specialized procedure and is actually considered radio-surgery.  Who do they want to send you to....Sears?      Also, it wouldn't hurt to call UVA Gamma Knife Center (434) 924-5733  and talk with them as they are well educated on insurance policies and problems and they might be able to help you.  Try visiting their site: 

http://www.healthsystem.virginia.edu/internet/neurosurgery/gamma-knife-new.cfm

Also, get a copy of your MRI's on CD-ROM so you can have them....

Gary

[viejita]

I had an appt with UVA for a month before Mary Burton told me that they don't work with my Ins. and she cancelled my appointment.  I was supposed to have the GK on June 30.  Exactly one week before I was to be at UVA they told me about the Ins. problem.  I do have a POS form of HMO and if I pay 30% of the cost myself I could go there but that is beyond my resourses.  The special permission is for the Dr. to write a letter of need to the Ins. and if they approve, then I can have the treatment as if it were within the system.  And its not like I had a choice of Ins. company.  I was a teacher in Norfolk (just retired this month after 37 years!) Optima is all that Norfolk offers.

[viejita]

I couldn't go to sleep .  I need to clarify my previous post.  The people at UVA were VERY nice to me.  After seeing my MRI films, Dr. steiner wanted to talk to me himself to be sure that I was aware of other possible treatment options.  And even though I wasn't going to be treated there, he sent me a copy of an article he had published about treatment results with ANs and GK.  It wasn't just a photo copy, it was a bound copy with a heavy cover.  And Ms. Burton was on vacation with her daughter, I believe, but was still trying to work something out in my behalf and she called me several times from her vacation.  I really appreciate her efforts.

[GM]

No sweat...no need to explain.  Where does your insurance company want you to get treated?  Please visit this Yahoo site:  http://health.groups.yahoo.com/group/Acoustic_Neuroma_and_Gamma_Knife/messages
I belong to it also, it's a site for people that had the Gamma Knife and they may be able to share some tips on insurance.  Another is http://health.groups.yahoo.com/group/Acoustic_Neuroma_Awareness/messages  this is a Yahoo site for people with AN's.  Does your insurance offer a "Case Manager"  sometimes with expensive procedures insurance companies assign a Case Manager to help you through the process.  They do this to assure that there are no unnecessary costs.   

[Kim]

My insurance company assigns such managers.  Mine was wonderful.  She called just a couple days after I was diagnosed, and explained her role.  She was not only going to be following my case from the treatment and billing side, but was a licensed counsellor as well, available 24/7 if I had any questions or concerns, or just needed to talk.  She called me often just to see how I was doing, phyically and emotionally.  She was great.  My bills sailed through for payment, no problems. 

Of course, 3 months later my husband's employer changed plans, and the new one stinks.  Thank god it didn't happen sooner!  My follow ups are coming out of my pcket.

[GM]

Russ from the Yahoo site replied with the following:

"Hi Gary
  I see your post over there if you are GM.  Seems a workable issue with communication between carrier, hospital and patient.  The person can go to the page bottom here: http://forums.prospero.com/irsa and post the issue , or, read other posts.   I don't prefer the site but there are patient stories in dealing with insurance at http://www.anarchives.org/ , or, http://www.anarchive.org/ Whichever link works... I hope this helps in some way.

 Take care
  Russ"


Thanks Russ...I hope you don't mind me posting this...

Gary