Need HELP!!! New to the forum !!!

[Shiva]

Hello, My name is Shiva (basically from India) currently living in Maryland. My mom (Aged 65) had a gradual hearing loss in the last 3 yr medical history and last Nov'07 when hearing test was done, she had total 100% hearing loss on her left ear. Right ear is fine. Doctors in India confirmed this as a Menierie's disease and she should be okay with one ear (no life threating). I got her to US on a visitor visa for second opinion (with no insurance) and took her to an ENT specialist and he recommended to do an MRI. We did MRI (with/without contrast) last week and I found she has acoustic neuroma. This is what the result says (sorry for putting the long result). I have an appointment with my ENT only on 04/21/08 to discuss abt the results and so thought to have some discussions in this forum. Any suggestions/help would be really appreciated.

TECHNIQUE :  The examination was performed with and without the intravenous administration of 15ml of OptiMARK contrast.
 
FINDINGS : There is a Large left cerebellopontine angle mass extending into the left internal auditory canal and widening the left porous acousticus, with dense enhancement, measuring 16mm AP by 22mm ML by 16mm CC, representing a left vestibular neurinoma. There is minor mass effect. The right cerebellopontine angle is clear.
 
Normal Cerebral hemispheres, with normal cortical gray matter and white matter tracts. There are mild white matter hyperintensitles supratentorially likely representing chronic ischemic change.
 
Normal Ventricles, without alteration in size of morphology.
 
Normal corpus callosum, with a normally developed rostrum, genu, body and splenium.
 
Normal septum pellucidum.
 
There is no extraaxial mass lesion, or fluid accumulation.
 
Normal bilateral basal ganglla, thalami, and internal and external capsules.

Normal sella turcica, pituitary gland, infundibular stalk, optic chiasma and hypothalamus.

Normal visualized bilateral cavernous sinuses.
 
Normal suprasellar, interpeduncular, and pre-pontine cisterns.
 
Normal enhancement of the dural sinuses and cortical veins. There is no enhancing supratentorial intra-axial or extra-axial mass lesion, or vascular malformation.
 
Normal midbrain, pons and medulla, without signal or morphologic alteration. Normal tectal plate. There is no enhancing abnormality of the brainstem.
 
Normal vermis and cerebellar hemispheres, without tonsillar ectopia. There is no enhancing abnormality of the cerebellum.
 
Normal flow within the carotid and vertebral arteries, without a demonstrated aneurysm or occlusion of the Circle of Wlllls.
 
Normal bilateral temporal bones, with normal bilateral internal auditory canals (IACs), mastoid air cells, and petrous apices. There is no enhancing abnormality of the cisternal or intracanicular portions of the bilateral 7th or 8th cranial nerves. There is no demonstrated fluid within the tympanic cavities. Normal visualized bilateral vestibula and cochlea.
 
Normal bilateral Meckel's cave.
 
Normal bilateral orbital contents, with nornal visualized bilateral intraconal and extraconal spaces, extra-ocular muscles and optic nerve sheath complexes.
 
Normal visualized paranasala sinuses, without demonstrated mucosal inflammatory process.
 
Normal clivus, without a destructive process.
 
Normal foramen magnum, with CSF surrounding the brainstem-cervical cord junction.
 
Normal anterior atlantoaxial articulation of the cervical spine.
 
Normal visualized central osseous skull base, without a destructive process.
 
Normal visualized soft tissue structures of the suprahyoid neck, at the craniocervical junction.
 
Normal visualized posterior nasopharynx, without a demonstrated adenoidal pad hypertrophy, retention cyst, or mass lesion.
 
Normal osseous calvarium, without an osseous destructive lesion.
 
Normal subcutaneous adipose space of the calvarium, without a demonstrated soft tissue mass lesion.
 
IMPRESSION : Large left probable vestibular neurinoma with minor mass effect.
 
Minor probable chronic ischemic changes.
 
Otherwise, normal MR of the brain without and with contrast. Specifically, no hemorrhage, additional mass or mass effect or infarction.
 

My Question :

1) Considering her age, what is the best approach? Surgery, radiotherapy?
2) Is this size life threating? Is she going to get affected in the facial nerve sooner? Since we did not take any MRI before, we do not know the growth rate...
3) Since no pre-existing conditions are covered by insurance (vistor insurance) is there any organization/charity to help us OR should we consider to get treatment in India?

I LOVE MY MOM so much and Iam the only child to her. I didn't share her MRI results with any  of our family members (even my dad doesn't know).  I don't know what to do. Pls. any HELP/ADVICE/SUGGESTIONS would be really appreciated.  Thanks a lot. I want to save my mom.

Regards,
Shiva

[Kate B]

Hello again,

It looks like your info posted twice.  I will copy my reply here too.

Hello Shiva,

Welcome to the forum.  This is a supportive group.

First and foremost, this is not a life threatening condition. An acoustic Neuroma is a benign condition.
It sounds like her AN is about 2.2 cm which the report calls large.

Yes, a diagnosis is a shock especially when words like "tumor" and "mass" are used. It seems like you don't want to "worry" your mom or dad in your post.  Knowing that it is benign will make it easier to share.  Others on this forum are researching for their parents too and may offer you the way they shared information. 

Her age is a consideration for treatment options.  There is no one right way to treat it, and when you speak to the doctors ask questions. You need to find out the location of the tumor. If it is pressing on the brainstem, it presents different challenges.  Her report is rather lengthy and I am not a physician, but it doesn't appear to be touching the brainstem. Take your time to study her options and line them up with the size,location, her hearing level, etc...

Here is a link that you may find useful when you go to the doctor. I found it absolutely necessary to come in prepared with a list of questions to ask the doctor. Otherwise the doctors say what they want to say and are out of the room before you have a chance to digest what they have said and then to gather your thoughts enough to ask intelligent questions.The beauty of it is that you can print it out as many times as is necessary and there is a space for you to write notes.
http://anworld.com/questions/


Kate
 

--------------------------------------------------------------------------------

Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/
 

[Jim Scott]

Hi, Shiva:

Except for the acoustic neuroma, of course, your mother's MRI report sounds pretty normal.  Her AN isn't too large and if her overall health is good, surgery and/or radiation should not be a problem.  The examining physicians will run pre-op tests before doing any serious procedure and if your mother has any health issues, they'll be found and addressed prior to surgery or radiation. 

I had both (surgery and radiation for a 4.5 cm AN) when I was 63 years old and did just fine, under the care of very knowledgeable doctors and with the support of my wife and adult son, so your mother's age (65) shouldn't be an issue. 

An acoustic neuroma is almost always a benign tumor.  Although this is a remote possibility, left untreated, it can grow large enough to press on the brainstem and eventually cause death.  Growth rates for acoustic neuromas are erratic. They generally grow v-e-r-y  s-l-o-w-l-y but have been observed to grow rapidly within a brief period, so they must be addressed.  If left untreated, the AN will continue to grow, even if slowly, and could very likely affect your mother's facial nerves - and more.  This should not be allowed to happen as sometimes the compromised nerves do not regenerate following surgery, leaving the patient with facial paralysis or other problems.

AN surgery and/or radiation is expensive.  Most surgeries run close to $100,000. (U.S.) for doctors fees, hospital charges and tests.  Radiation isn't exactly cheap, either.  I don't know the general cost of Gamma or Cyber Knife operations, but I'm sure other posters do and will offer that information to you. 

I would suggest looking into whatever sources of funding you can find and try to have the radiation or surgery performed in the U.S., if this is at all feasible.  I'm not an expert on charitable organizations and as your mother is a foreign national here on a visa, it may be difficult to find funding for her but it certainly is worth the time and effort.  If that doesn't prove fruitful, returning to India for treatment is the only other realistic option open to you and your mother.   

Shiva, I respectfully suggest that you share the MRI results with your family.  This shouldn't be a secret and she'll need their support, as will you.  I would simply present them with the facts: "Mom has a tumor in her skull.  It isn't cancer.  It can be 'fixed'.  She won't die.  We need $100,000. to fix this.  Any suggestions?"

Your dedication to your mom is both touching and commendable.  I'm sure other, more knowledgeable posters will have good suggestions for you.  I hope what I've offered will help a bit.  Please stay in touch with us.  Thank you. 

Jim

[Kaybo]

Shiva~
Hello!  I don't have much (anything, really) to add to what Kate & Jim have already stated, but I just wanted to tell you that we are here and care for you and your situation.  I have free long distance and would LOVE to chat with you, if you want to send me your phone number in a PM. Sometimes it just helps to talk to someone who has been there!   Also, my blog address is at the bottom of this if you would like to see it and my life after AN.  There are actually some SCARY photos as I just had some surgery to try to fix my smile!!   
Let me know...
K

[leapyrtwins]

Here is a link that you may find useful when you go to the doctor. I found it absolutely necessary to come in prepared with a list of questions to ask the doctor. Otherwise the doctors say what they want to say and are out of the room before you have a chance to digest what they have said and then to gather your thoughts enough to ask intelligent questions.The beauty of it is that you can print it out as many times as is necessary and there is a space for you to write notes.
http://anworld.com/questions/

Shiva -

the information Kate gave you is by all means very helpful, but to my knowledge, it is not endorsed by the Acoustic Neuroma Association (ANA USA).  The ANA offers wonderful information, right on this very website.  Under "overview" you will find basic information about ANs, information on how ANs can be treated, a list of questions to ask the doctor, and other valuable information.   Under the "medical resources" section you will find help in how to choose a doctor to treat your mother's ANs, as well as a list of doctors who are qualified to treat ANs.  The ANA will also send you informational brochures, which explain this information, in case you have family members who prefer reading printed material instead of information on a website.

Acoustic neuromas are rarely cancerous and they tend to growth slowly, so your mother will have time to research her options and decide what treatment she would like and where.

Best of luck,

Jan

[sgerrard]

Hi Shiva,

That's quite a long list of normal things in the MRI report, which is good to see, at least. I think mine just said "nothing else noteworthy."

The size is considered medium, so both radiation and surgery are possible. The "minor mass effect" means the AN is touching the brain stem, but hasn't pushed into it much. Even if it grew fast, it would take a year or so to start having a serious effect, so it is not an emergency. The fact that her hearing has declined over time would suggest that it is slowly growing, though, so you will probably need to do something about it during the next year.

The big question is which country to get treatment in. I would not be surprised if you found some good neurosurgeons in India, especially in the big universities and large hospitals. I also suspect it would be quite a bit less expensive in India than in the US.

This is a link to a "medical tourism in India" site, which has a section on neurosurgery. Their listing for brain tumors treated includes acoustic tumours, meaning acoustic neuromas: "Examples of brain tumours operated are meningiomas, pituitary tumours, craniopharyngioma, glioma, hemangioblastomaependymoma, acoustic tumours, Trigeminal neuromas, base of skull tumours, skull tumours, orbital tumours, intraventricular tumours."

http://www.indianconsultancy.com/medicaltourism/treatments/neuro_surgery.html

They do have GammaKnife radiation as well; the closest Cyberknife radiation center would appear to be in Hong Kong, although my geography is not too good on that side of the world. In answer to Jim's question, the cost of radiation treatment in the US is typically about the same as the cost of surgery, since the machines are expensive.

Maybe you can find an organization to help finance treatment here in the US. But if not, I think you would be able to find a competent surgeon in India. For radiation treatment, I would be even more comfortable going to a center anywhere in the world; the treatment itself is not difficult to do, and mostly done with computers.

Best wishes to you and your mother,

Steve

[Kate B]

Here is a link that you may find useful when you go to the doctor. I found it absolutely necessary to come in prepared with a list of questions to ask the doctor. Otherwise the doctors say what they want to say and are out of the room before you have a chance to digest what they have said and then to gather your thoughts enough to ask intelligent questions.The beauty of it is that you can print it out as many times as is necessary and there is a space for you to write notes.
http://anworld.com/questions/

Shiva -

the information Kate gave you is by all means very helpful, but to my knowledge, it is not endorsed by the Acoustic Neuroma Association (ANA USA).  The ANA offers wonderful information, right on this very website.  Under "overview" you will find basic information about ANs, information on how ANs can be treated, a list of questions to ask the doctor, and other valuable information.   
Jan

Yes, thank you for pointing that out Jan.  I agree that the ANA also has wonderful information. My first contact was with them and I spoke with a lovely person named Mary through their Available to Talk contact.
 The ANworld website was written by four patients all from different vantage points.  One had FSR, one is a wait and watcher, one had middle fossa (me) and one had retrosigmoid surgery.  It is meant to be one resource out there among many.
 
Kate

[Shiva]

Thanks Jim, Kaybo, Jan, Steve for your postings.  Appreciate your valuable suggestions. GammaKnife surgery in India for my mom costs about $3,700/-  (The 'Package' includes all path lab tests, imaging, complete fees of the Neuro Radiologists/Neuro Surgeons/ Radio physicist, nursing, medicines for the patient while in the hospital, stay and food for the patient and one attendant for two days in the hospital) whereas a CyberKnife surgery in USA costs $30,000 - $80,000/-.  I received email from both these hospitals. My mom MRI evaluation is tomorrow and will let u know what her doctor has to say. I have to decide which one but definitely India option is open.

[leapyrtwins]

Shiva -

best wishes to your mom for her appointment tomorrow.

And, yes, please let us know what her doctor has to say.

Jan

[Shiva]

Okay.. this is what our doctors suggests... he said Surgery (Translab) would be the best choice since my mom is only 65 yrs old. He said "If she was 85..I would suggest GF/CF". He also said he doesn't see any risk in having surgery than doing GF/CF where if it regrows it will be challening task for surgery. Any opinion.

[Jim Scott]

Hi, Shiva;

Many physicians are cautious about using large amounts of radiation as all the AN radiation protocols require, because the human body can only absorb a finite amount of radiation before it begins to do serious harm.  Once a person has absorbed a high level of radiation, as in treating an acoustic neuroma, there is little room left for even more radiation in the future, such as X-rays and, if it ever became necessary, cancer treatment.  This is the rationale some doctors use to favor surgery.  Another factor is that some doctors are simply more comfortable with surgery as opposed to radiation, which requires the services of a radiation oncologist.  The regrowth-after radiation-makes surgery-more-difficult canard is disputable, as research will show. Then you have the problem of finances. 

Frankly, Shiva, I would seek a second opinion. 

Jim

[Debbi]

I'd like to agree with Jim and encourage you to get at least a second opinion.  What I've learned in my very short time as an ANer is that different doctors prefer different approaches.  I was fortunate in many ways that all agreed that there was one option that was best for me - this eliminated a lot of worry, probably.  That being said, I would still suggest seeking out other medical opinions.  I didn't find the right doctos until my third consult.

You may also want to ask some of the surgeons here if they could recommend someone in India.

You have our prayers and good wishes. Let us know how things progress, okay?

Debbi - smeling the flowers in NJ...

[sgerrard]

Okay.. this is what our doctors suggests... he said Surgery (Translab) would be the best choice since my mom is only 65 yrs old. He said "If she was 85..I would suggest GF/CF". He also said he doesn't see any risk in having surgery than doing GF/CF where if it regrows it will be challening task for surgery. Any opinion.

Let's just say, this is what our surgeon suggests. 

Item 1. "If she was 85..." This is the old school view of radiation, dating from the 1991 NIH Consensus report on AN - sadly, the last one published in that series. Since then, the view has changed widely, that radiation is not just for the elderly and infirm, but is a good treatment for a much wider range of ages and conditions.

Item 2. The "challenge" of surgery on regrowth works out like this, if you do the math: chance of regrowth = 4% (actually lower); published studies of follow up surgery, not counting the whining of the surgeons, is that 25% result in facial nerve damage; net effect = 1% additional risk of facial nerve damage.

That is not to say that surgery is not a reasonable choice as well, but the decision should be based on more current views of the relative risks.

Post a question on the cyberknife patient support forum; practicing doctors answer them quickly, and you can get an opinion from a radiation oncologist who really knows their stuff. The link is http://www.cyberknifesupport.org/forum/. One or two of the doctors there will often accept a mailed in copy of an MRI and give a free evaluation.

Steve

PS to Jim: the question of total body exposure has come up before  on the CK forum. The view of the oncologists there is that radiation treatment anywhere else in the body is still perfectly okay; and even again in the head if the situation warrants it. The exposure outside the focal area of the treatment is similar to 2 or 3 cat scans, not more.

[Kate B]

Hi again Shiva,

Well one doctor visit is over!  I hope you received reassurance that it is a benign condition.

I believe that more than one opinion is the right thing to do even if you decide to do surgery as suggested by the doctor.
Each doctor shares different information; even if they are both surgeons. I consulted renown surgeons in Chicago and they had a different approach.

I know that these are tough decisions.

Kate

[Shiva]

After lot of thinking, I think the best procedure would be to go with radiosurgery for my mom b'cas.. Here are the options:

IF SURGERY DONE IN USA

1)  Its expensive since no insurance for her.
2)  After spending this much money, me, my wife cannot sit @ home to take care of my mom. we both have to work to pay the bill.
3)  Post operative complications...(considering her age) and those procedures are expensive too...
4)  Having a nanny/servant to take care of her is also expensive.
5)  Post operative followup do be done in US only. she needs to make trip every year to US for post operative followup alteast for next 2-3 years.

IF RADIOSURGERY DONE IN USA

1) Cyberknife is available only in US (not yet in India) so this is an advantage.
2) But its expensive
3) Post surgeryfollowup has to be done in US.

IF SURGERY DONE IN INDIA

1)  Cost is cheap (advantage)
2)  Lot of relatives/friends families to take care of her (advantage)
3)  Post operative complications are a risk (espe.. CSF leaks)
4)  Post operative followup is within the city (advantage).

IF RADIOSURGERY DONE IN INDIA

1) Cost is cheap.
2) Post surgery Followup within the city

Any suggestions....

Another questions I have is:  My mom currently have left ear deafness and other than that she is very healthy (no BP, Sugar, cholestorol etc). If we opt for "wait & watch" what would be the next complication we would likely be seeing... Is her face going to be num/swell/paralysis?? I mean what type symptoms we might expect to see??? Iam scared everyday & I look at my mom very strange...since me & my wife go to work..my mom stays @ home alone and keep her calling every hour...