dont know what to do

[suzana242]

Dear All,

1 week ago, I knew about A.N. and I knew I had one . mine is about 8x7x6mm. The ENT said it is small. but this took 50% hearing loss from my left ear. The ENT refereed me to another specialist in UMSC. I'm meeting him this Monday. Don't know what to expect and what question to ask. Is it expensive to perform this operation?

Thanks

[hruss]

Hi Suzana,

I am sorry you are one of those unlucky ones, like all of us here, who were diagnosed with AN. I know how you feel! I went through that 5 - 6 yrs ago and it wasn't the best time in my life. this week is actually 5th ANniversary of my last surgery! (I had three surgeries in the span of a year. I felt I couldn't get rid of it). Brain surgeries are the most expensive (to my knowledge), it makes sense because they deal with the most sensitive part of you - your brain, your computer, right?

The good thing is that you have discovered this forum that is full of useful information and members who are here for you.

I have a list of questions that might be a good starting point for you. I've forgotten how to attach files here though. If you someone knows, please let me know. Otherwise I will PM it to you. I found this list here on the forum, so I don't claim any copyright and if someone recognizes it, please do not get angry with me.

As for the cost - it depends on the coverage you have. I'm Bulgarian and my first two surgeries were done in Bulgaria where healthcare provision is heavily subsidized by the government. Despite its lower cost, the healthcare provision is not stellar and ANs are rare enough for Bulgarian doctors not to have enough experience performing such surgeries. As a result, I had to look for better specialists and I went to Germany where I had to pay on my own. The cost was outrageous but I was blessed to have my friends and colleagues chipped in.

In the States, I've heard from other members here, your surgery is covered by you insurance company. I am not well acquainted with how pre-surgery is processed here since I struggled with that condition before coming to the States 2 yrs ago. And I've been uninsurable ever my arrival. I hope that others can shed light on this matter.

Please do not panic, after all your tumor is benign. You can read around the forum for hundreds of successful stories and how people cope to live post-surgery.

Hang in here and stay positive.
Hrissy

[suzana242]

Dear Hrissy,

Thank you for your concern. FYI, Im from Malaysia. you are right , I felt so blessed to find this forum, all the shared experience by everyone give me some comfort. but unfortunately in Malaysia, AN is not so well known. I was told by the ENT I met , there are only 2 specialist for these cases. This forum is now my only visit each time Im surfing the net. I'm going to have my first appnt this Monday and will refer any unsure issue to this forum again.

I don't know about AN before, now that I'm one of the chosen one for this rare AN, I truly understand each one of your sadness having this sickness. But the great thing I learnt about all your experiences , it gave me strength and faith that I can over come this. I pray for all of you to be healthy despite of what we carrying in our heads and please pray for me too 

Regards

p/s sorry If my writing English is not good

[CHD63]

Hi suzana242 .....

It is a scary time when you are diagnosed with an acoustic neuroma.  You have found a very supportive group here on the ANA Discussion Forum who understand completely how you feel.

Hrissy .....  This is a link to where you may have gotten your questions.  If so, these are excellent questions as a starting point to ask your doctor.  See:  http://anausa.org/index.php/overview/questions-for-treating-physician

Thoughts and prayers.

Clarice

[hruss]

Clarice, thank you for stepping in - my questions are on an MS Word document (the way I found them here years ago) but are the same ones from the link you posted.

Suzana, tell us once you meet your doctor. I don't know anyone from Malaysia. However, I know about a hospital in Bangkok, Thailand. I haven't experienced it personally but read good reviews about it. It is called Bumrungrad and it serves patients from around the world, Americans incl, who are not insured in the U.S. and can't afford the outrageous costs here.
http://www.bumrungrad.com/Intro_Bumrungrad/vdo.aspx

If you happen to ask your doctor about this clinic, please let me know what his opinion is.

Please don't cry, but rather take the AN as a challenge (rather steep, I know) - you'll overcome it and you'll be proud of yourself. Let alone the others!

Hrissy

[suzana242]

Dear Clarice and Hrissy.

Thank you for sharing. the questions list I will print and ask the doctor. I hope he will not think I,m trying to outsmart him.
Hrissy thank you for the link recommendation on the hospital in Bangkok. actually im planning to survey around other neigbouring countries near Malaysia.

while seaching for AN, i came across this link. Some sort of research done in NZ about honey than used to subside the growth of a tumor
http://www.bio30.com/Research/maruta-research.html

do you think it will work for us?


rgds

suzana

[It is what it is]

Hi, I'm sorry to hear you are dealing with this, but you have come to the right place for information and support.  It might be helpful to ask about the possibilities of preserving the remainder of your  hearing?  With caring, Karen 

[hruss]

Hi Suzana,

Thanks for sharing the article. Although I'm skeptical about such methods, it is interesting to read it. Also, the propolis concoction refers to a particular tumor, as far as I got it.

About the concerns in regards to the visit with a doctor - better be prepared rather than not. He will see that you did your homework. I had the same concerns when visiting Bulgarian doctors, but by showing up with a list of questions I thought they looked at me as a patient who was educated and they can more openly talk to.

Bulgarian practice is different than American, this is my observation. In the U.S. doctors guide you through the process, whereas in Bulgaria, they do not tell you anything. No one came to tell me what my tumor was like, what the complications were, nothing. They just saw my MRIs and asked to get admitted immediately and be prepared for a surgery in a few days. That's why I've created a google group (both in EN and BG), where I share my experience with other Bulgarians and to be support for others.

I hope the visit will go well. Keep me posted!

Hrissy

[suzana242]

Dear Hrissy/Karen and Clarice,

Just came back from Doctor's appnt. waited for about 2 hours but he met me for about 5-8 minutes. i gave him my whole mri images. he just look at one of it and said nothing to worry. I lost 50% hearing. he said their first unit of gamma knife will be able in couple of months and he has many list of patient waiting for this.  he ask me to take another mri after 1 year and compare the result. he said 80% of this tumor will not grow. 

I asked him about this gamma machine ie the procedure, the cost  but he told me not to worry and I might not need it. Honestly, Im not satisfied with his answers.  .

Rgds

[CHD63]

Suzana .....

Admittedly I do not know anything about the medical care available to you where you live, but if you are uneasy about the answers this doctor gave you, I would seek out another opinion from a different doctor.

There are several places in the US where you can send a copy of your MRI scan and they will give you a free evaluation and opinion on what they think is the best treatment plan.  (You are not obligated to go to them for treatment.)   It does give you another opinion without being seen.  Let us know if you would like addresses for any of these places.

There is a surgical procedure available in the US called Middle Fossa approach, that often gives the best chance of hearing preservation.  Not every neurosurgeon is familiar with or experienced in doing this approach so it may not be available to you where you live.

If you are not satisfied with the answers you have received, if possible, you need to seek out additional opinions.

Many thoughts and prayers.

Clarice

[It is what it is]

If you are not satisfied by the doctor's responses and lack of information, I also hope you  seek a second opinion.  You deserve time and attention when discussing something of such importance.  I had the Middle Fossa surgery that Clarice mentioned and my hearing was preserved.  With caring,  Karen

[Echo]

It is not uncommon with smaller AN's to be told to come back in 6 months or 1 year for a followup MRI to see if the AN is growing.  If it is not growing and you are not suffering adverse symptoms then you could fall into the watch and wait group and continue with yearly MRI's avoiding any type of treatment until necessary.  You could also decide to move forward and do something before the tumor grows and symptoms increase.  In your case, Suzana, since the specialist has told you not to come back for a year, take some time now to continue your research and find what treatments and other Dr.s would be available to help you.  It sounds like you may have to look a little further away, so taking some time now to deal with this is a good thing. 

Best of luck,
Cathie.

[hruss]

Suzana, the situation you describe seems a lot like the situation in Bulgaria - many patients, a few facilities and even fewer well-trained doctors to have enough time for everyone.   

Do you have the option to seek another opinion? I think, I am not sure, the clinic in Bangkok, Bumurgrad, does offer to review your MRIs for free. Also, the clinic I went to in Germany offers second opinions for free.

Hope you'll be able to consult another doctor soon,
Hrissy

 
 

[suzana242]

Dear All,

Thank you for all your concerns. feel really touched to read all your comments. I love to have the contact you can suggest Clarice. If something can be done to preserve my remaining hearing and if the cost within my mean. I dont mind travel to anywhere to fix this unfortunate issue. I must admit there are so many blessing in disguise that I seen in these weeks I learnt about this sickness. One of it I be able to know wonderful strangers that care so much to share their success stories to help stranger like me. I pray that God bless you all and give strength to all of you to overcome this sickness. 

[MDemisay]

Dear Suzana,

If travel is not an issue for you, then why not come here to the United States? There are many talented neurosurgeons here in the major cities. Many would offer free opinions if you sent your MRI's and copies of your reports. Two notable ones I can think of off the top of my head are the House Clinic in San Fransisco, California and the University of Pittsburg Medical Center in Pennsylvania.

A second opinion, in your own counrty may be hard to come by....Good luck. Surgery is a frightful thing in itself it helps to have a couple opinions, myself I had 14! I was trying hard to avoid surgery of a 3.1 cm AN. In the end, I found it was more prudent to have surgery.

Mike