Need some advices... :-(

[sporeguy]

Hi everyone,

First of all, I like to thank ANA discussion forum for having such a wonderful resource.

It has been a worried week for my family members and me as my mother is diagnosed to have Acoustic Neuroma.
I am Richard from Singapore. In a population of about 4million and the chances of getting AN is 1 out of 100,000,
 there isn’t any local support group nor resources that I can fall on, except to rely on specialists.

As an engineer by profession, I like to study the cause and find out the best treatment for my mother.
This forum provides me many valuable information by AN sufferers. My mother is 62 and has tinnitus in the right ear.
It was only 2weeks ago that she felt the ringing was getting louder and something pressing in her ears
(feels like a cotton bud stuck in the ear) that she went to see an ENT specialist.
The ENT spec told her there is nothing wrong with her ears and suspect there is something in her head so arranged a MRI scan.

Below is the Radiological Report.

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Exam Date: 30Mar2009
Exam Ordered: MRI IAM Full Study

MRI internal auditory meatus.

Clinically: right tinnitus, sensorineural hearing loss.

A post contrast MRI internal auditory meatus study was performed.

There is an elongated intra and extracanalicular acoustic neuroma seen on the right side.
This measures approximately 13.2mm in length and shows diffuse contrast enhancement.
Normal appearances are seen of the left internal auditory meatus and the nerve VII as well as nerve VIII complexes.

Normal appearances are seen of the rest of the brain parenchyma and no area of suggestive of infarct, haemorrhagic lesions or mass lesions noted.

Impression: the appearances are those of a right-sided acoustic neuroma.

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Before posting my questions, I spent many hours to read thru the posts.
Grateful to Nancy Drew, ppearl214, Sue, GM and many others who offers great advices & shared experiences.

Based on the Radiological Report, I have several questions.
I understand this is a patient to patient resource and does not constitutes any medical advice.
However, I would greatly appreciate if anyone can offer some advices as a reference for me to make decisions.

1)   The MRI report didn’t state the width of the tumor. Is a rescan necessary?
      I worry the original scan might not be clear enough, thereby affecting our decision to seek the most appropriate 
      treatment.

2)   Ã¢â‚¬Å“13.2mm in length and shows diffuse contrast enhancementâ€?. I am worried that this diffuse contrast
      enhancement means the tumor is expanding in size. Does it means a quick GK/CK/Surgery should be done asap?

3)   Presently, my mum can hear pretty well on her right side despite constant ringing.
      She can still speak on the phone using her right side. If we want hearing preservation, is GK possible?
      I don’t know if there is CK in Singapore.

4)   If in US dollars, for an estimation, based on my mums condition (tumor size, report),
      is it close that GK = U$20,000 to U$30,000  and CK = $60,000 to $70,000?
      CK is higher due to the follow ups but have a much higher chance of hearing preservation.
      It is a choice between the Hearing preservation versus Radiosurgery costs that we can afford. Any advices?

5)   Hearing preservation aside, can I assume GK or CK will result in equal effectiveness in tumor growth control?

6)   Has anyone heard of  Stereotactic radiosurgery (SRS)?

A check at medical facility website in Singapore states that
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 Ã¢â‚¬Å“ Stereotactic radiosurgery (SRS) SRS precisely delivers a high dose of radiation to the tumor in a single setting.
The national Neuroscience Institute uses the Novalis shaped-beam stereotactic radiosurgery unit, which is equally or more effective than Gamma Knife and CyberKnife.�

Stereotactic radiotherapy (SRT) SRT may be a better choice than SRS for acoustic neuromas in patients who still have some degree of useful residual hearing. SRT delivers precise stereotactic radiation divided into multiple smaller doses hence reduces the risk of radiation damage to the brainstem and cranial nerve responsible for hearing.
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Is SRS/SRT  really more effective than GK/CK or is it just different machines used that manufacturers tend to say theirs is better than others?

My mum will be seeing an ENT specialist this coming Monday  6Apr with her MRI video + report.
Currently, I am still searching the net for more information. Sorry for posting such a long email.
Hope to hear some advices for you all.

Thank you and Best Regards
Richard

[leapyrtwins]

Richard -

do you realize we have another forum member who lives in Singapore?  His name is Rick and he goes by the user name of QRM.  He had surgery at House Ear Institute in Los Angeles recently.  He is back in Singapore now and doing well.

Here is a link to his first post http://anausa.org/forum/index.php?topic=8001.0 

You might find it helpful to get in touch with him, as he and his wife would be someone "local" who could offer support to you and your family.

Jan

[sgerrard]

Hi Richard,

Here is another link where Rick (QRM) reported on his surgery at House Ear Clinic:
http://anausa.org/forum/index.php?topic=8621.0

In one of those posts, he invited anyone in Singapore to drop him a line, so you might want to send him a personal message.

Some specific answers to your questions, as best I can:

1. The length is the most common measurement given in an MRI report. They may want all the dimensions if they needed to know the volume, in preparation for a radiation treatment, for instance. They would typically do another MRI specifically for that purpose at the time.

2. The diffuse enhancement would not indicate anything about whether the tumor is growing or not. The only way to tell that is a series of MRIs, several months or more apart. The diffuseness might indicate that the tumor is somewhat older or dormant, I don't really know about that.

3. Several people have reported hearing preservation with GK; Nancy Drew, who had GK last November, being the case that comes to mind.

4. CK is a little bit better for hearing preservation, and the extra cost is usually because it is three treatments instead of just one. It gives the best chance of retaining hearing, but the chance with GK is still good as well.

5. Both GK and CK have very good tumor control results, generally considered about equal and around the 98% mark.

6. The other machines, including Novalis, are now being used for a treatment protocol very similar to CK. The results indicate that they can be about as good as GK and CK, though I think the claim that they can do any better is not substantiated. CK is still the only system that monitors head position in real time during treatment, giving the best accuracy in practice. You might want to check out the Cyberknife forum for more comments on the various systems: http://www.cyberknife.com/Forum.aspx.

My own feeling is that in the hands of a good radiation oncologist who has treated ANs and other brain tumors, any of the systems can deliver a good result. In the end, whether hearing is preserved is probably determined mostly by the particular AN and the condition of the cochlea and hearing nerve at the time of treatment, than it is by the type of radiation equipment used.

Another possibility is to simply watch and wait, and have another MRI in six months. If the hearing is not deteriorating and the AN is not growing, just watching it may be the best thing to do.

Best wishes to your mother,

Steve

[Sue]

First of all Richard, you are a good son!  It's obvious that you love and worry about your mother very much.  She has a good advocate in you!

My treatment was nearly 3 years ago, just after I turned 60.  I sympathize with your mom for having to go through this later in life. 

Steve gave you excellent advice and I can't add much to that, except to say that your mom will be okay.  It amazes me that some people can grow a huge AN and symptoms won't really be alarming until the thing is 4 CM, while other's start having symptoms when the AN is just a baby.  I guess it's good that this showed up when it did.  It could have not manifested any symptoms for another 10-15 years and she would then have to deal with this when she was in her 70's.  So, be thankful for small favors I guess.

Yes, find that other Singapore fellow!  That's what I thought of too.  And I wish your mom all the best in her treatment and eventual recovery. 

Kindest regards,

Sue in Vancouver, WA USA

[sporeguy]

Thanks Sue, Steve & Jan for all your advices and concern.

Especially Steve, you can be a doctor already... as what you wrote is exactly what the doctor told my mum today. => "Another possibility is to simply watch and wait, and have another MRI in six months. " 

He said that the tumor in my mum's head is small and does not need GK at the moment. Meanwhile, I think what I will do is to ask my mum to relax more and not to think abt it. I will also do some more research to see if there are any ways to control or shrink the tumor (eg. by food intake, exercise...etc). Also I'm planning to bring my parents for a holiday to New Zealand in Sept.

Thank you all for yr kindness.   

Warmest Regards
Richard

[Jim Scott]

Richard:

I apologize for my tardiness and responding after the fact, as it were, but I do concur with 'doctor' Steve's observations and comments.  Steve successfully underwent CyberKnife treatment almost 2 years ago and has a good grasp of the various factors associated with that approach (irradiation) to destroying an acoustic neuroma.  To ascertain the actual costs of CK treatment, I would suggest calling the treatment center and inquiring.  I'm sure they'll tell you.   

I'm doubtful there is credible evidence that homeopathic methodologies will be efficacious in shrinking the AN or arresting it's growth but there is absolutely no harm in seeking information.  More often than not, the conviction that we're in some sort of control of these exasperating little tumors by what we do (diet, exercise, vitamins, etc) is beneficial to both mind and body, so I wish you well with that quest. 

Frankly, Richard, your obvious concern and positive actions regarding your mum's AN are admirable, including the proposed vacation to New Zealand.  Kudos to you and of course, from everyone here, the very best to your mum. 

Jim

[QRM]

And here I am, sorry folks for not being around just been getting on with life, House move etc.  In fact much to my wife's horror, yesterday I used the skateboard I purchased in LA promising I would one day be back on it, ( a bit of midlife crisis thrown in). My scar is almost invisible I will do an update with photos over the next few days

Richard, as this is a bit of an old thread if you need any info drop me a PM and I will send over my contact detail happy to have a chat.

[4cm in Pacific Northwest]

Now that is SOOH cool!

Two people from Singapore knowing that they are but of the 1 in a 100,000 chance of having an AN tumor meet on-line... here in the American website.

Lets cheer for engineers who developed the internet ... and to Elsie (Edit note...Not sure what happened there with the spell- edit check?) "Virginia Fickel Ehr" for starting up the ANA!  

I just went on a long camping trip in another part of Oregon State and met a woman with children at the beach ... once we started talking we realized we both travelled from the same place... to our amazement we found we actaully live on the same road only few miles apart. But we had to travel afar to meet each other- yet we are neighbors.

GO figure?!?

Yes this forum is great! Aren't we lucky to have Jan who knows the old posts so well... and does not miss a beat (or a post)?  

DHM

[Tumbleweed]

Richard, I concur with what Steve and Jim said and have only a couple things to add:

GK is actually a form of SRS; it also employs a stereotactic method (a ring holding the head in place) in the delivery of a single dose of radiation. (Single dose implies radiosurgery.)

CK is actually a form of SRT; it also employs a stereotactic method (a thermoplastic face mask bolted to a table behind the patient's head) in the delivery of multiple ("fractionated") doses of radiation. (Multiple doses imply radiotherapy.)

As you suspected, GK, CK, and other forms of SRS and SRT use different machines to deliver the radiation. What is important in this regard is that GK and CK are widely regarded to be the most accurate, thereby minimizing collateral damage of healthy tissue adjacent to the tumor.

I am extensively educated in natural remedies and their use in countering disease processes. I tried a very rigourous and extended program of natural modalities to shrink my AN and failed. More info here:
 http://anausa.org/forum/index.php?topic=5782.0

I do not believe it is possible to control an AN's growth or shrink an AN using natural means alone. However, I am fairly convinced that some natural therapies are a very valuable adjuvant to western medicine and, in particular, radiation treatment. For more information, go here: http://anausa.org/forum/index.php?topic=9909.0

It may be possible to determine from your mother's last MRI the other two dimensions of her tumor. Sometimes the reading radiologist will only report the largest dimension, which is usually the oblique transverse measurement. This is the roughly horizontal measurement from outside (lateral) to inside (medial). The other two measurements are oblique AP (antero-posterior, or from front to back) and oblique craniocaudal (from top to bottom).

You should have your mom request a copy of the MRI. You should be able to view it on your PC. It takes a little bit of effort to learn how to navigate all the images, but after a couple hours you should be able to recognize the AN and make your own measurements.

Best wishes,
TW

[Pooter]

HIJACK ALERT!!!!

Now that is SOOH cool!

Lets cheer for engineers who developed the internet ... and to Elsie for starting up the ANA! 

DHM

Don't you mean Al Gore?  Sorry, couldn't resist..

Welcome to the forum, Richard!  We're glad you found us!

Regards,

Brian