Newly Diagnosed

[Larry]

Hi newbies,

I agree with the "experienced posters on here" and would add a little of my story to throw in the pot.

Almost 4 years ago, I started to have hearing loss on the phone (no other symptoms) - had an  MRI and as told I had a 2cm ANB and must remove it. Like a fool, I didn't do the research that I should have and went ahead with surgery. I had the middle fossa approach (no longer done by the top surgeon here). Well, if any of you thought that surgery would cure all - not in my case. Around 9 mths agao, my AN had returned - Absolutely fantastic!!!!!

It is now around 19mm. Since my surgery, I have had a headache every day and on a number of days they are debilitating - like i want to bang my had on a brick wall.

The surgeon here has now told me to do nothing - watch and wait. If it grows to a bigger size then consider options. I guess I am lucky in that i don't have facial paralysis or dry eye but after exploring options and reading posts on this board, I will be going for gamma knife (don't have FSR in Oz.

I will not go for surgery - once was enough for me.


Mark and Sue have identified the options available to you - sometimes it depends where the growth is in relation to your brain stem as to the best treatment option. When you see a radiation person ask them, how much bigger could it grow before radiation is not an option / as effective.

cheers




Laz

[marystro]

Research is helpful.  At least you will be more knowledgeable to make hopefully the right decision.  I just had a brief anxiety attack for about 30 sec, I think.  I calmed down and breathed deeply.  I am ok now.  Must be the anxiety with this thing.  Need to stay in control and be strong.

Mary

[Sue]

Hi Again Mary,

It's very easy to have an anxiety attack over this!!  It's not everyday somebody tells you that you have a brain tumor!!  Wasn't even on the radar...I said somewhere on here, that it's like the Roadrunner cartoons....you are just minding your own business and trying to carefully cross that railroad track and you look both ways and nothing is coming and then WHAM.  Ya kind of stagger around for awhile, but you regain your footing eventually. I still can't believe it some days. Every morning I wake up and that hissing in my ear tells me that it's still there. I think that's what was hardest to come to terms with - that the tinnitus will probably be there until the day I die. It's so irritating. Like a mosquito that won't go away. It's tiring, you know. It will eventually become just background noise and people get used to it, but I've had it since winter of 2004 and I'm tired of it and want it to GO AWAY.  I'm grateful it isn't any louder because there are cases of very severe tinnitus and I do believe people have killed themselves because of it.  An extreme measure, but I can sort of understand it if this was twice or three times louder than what I have now.  It can be unbearable for some people.  Anyway, we all have our down times. I hope you will begin to feel more and more optimisitic about your future. 

Sue

[marystro]

So I hear that the radio cut off is 3.0 cm.  Mine is 2.3.  Is there hope that I can just undergo CK or GK to preserve my exisitng hearing (25% loss) is not bad.  I can live with the hissing.  I am a healthy person but just so afraid of the risk of head surgery!  If there is no long term result on CK or GK because it is so new but if I can be good for say 10 - 20 years, who knows what new technology will come out then.  I just turned 50 years old this past April.

Mary

[Mark]

Mary,

Below 3 cm ,as your AN is , radiosurgical treatment would be intended as a cure. It is important to understand the difference in how "cure" is defined for each treatment. Surgery obviously intends to remove all of the AN and leave nothing behind capable of regrowing. Based on studies I've reviewed over the years, one could give this about a 95% probability. The caveat is the caliber of the surgeon used with the most experienced having a higher percentage than those who do them less frequently. Cure with radiosurgery is defined as killing all the cells in the AN so they can no longer replicate. In many situations there may be some degree of shrinkage following treatment, but the goal is to kill it and leave the carcass in place on the assumption that no more damage can be done. Control rates for radiosurgery are fairly consistently listed as around 98%.

The biology of radiosurgery and the long term results can bascially be traced back to the Gamma Knife which was first used in Sweden in 1969, so there is basically around 30 plus years of history to the treatment. Newer machines ( CK , Novalis, etc) all use the same biological approach as GK so while their specific results are shorter term simply because they are newer, the premise they operate on is the same as GK.

Mark

[marystro]

Mark,

Thanks for your continued support during this extremely difficult time for me.  And thanks to all others also.  You are a great group!

I just contacted Dr. Chang's office and left them a message.  I hope to hear back from him soon.  I will also call my ENT to see if I can get MRI scan forwarded to several doctors' offices (definitely Dr. Chang, Dr. Slattery and Dr. Doherty whom I will see July 26 in San Diego).  Not sure if they can make copies of MRI scan?  I do have copy of the written report but like Dr. Slattery said, picture tells a thousand words.  I want to have unbiased opinion without being pushed for surgery nor radio-treatment.  Although I prefer the decision to be radio given my fear of surgery.

Your analytical approach to this AN treatment is very useful.  Your information gave me a lot more knowledge to deal with this.  I am just hoping my AN would not grow at an alarming rate that I would be rushed into decision hastily.

Mary

[Sefra22]

Mary,
You are entitled to copies of your MRI. All I had to do to get mine was call the radiology dept. of the hospital where I had the MRI. I only had to give them 24 hours notice, and I could get as many copies as I wanted. (No charge) Mine were on CD's, and I actually could view it on my computer. I sent one of them via FedEx to House Ear Clinic, and got a call the very next day. Surprising when you consider I live all the way across the country in Maine!

[marystro]

Hi all,

I just saw the MRI scan and got 4 CDs today.  Another one fedex'ing to Dr. Slattery.  Reality hit hard when you actually see the tumor.  It's 2.3 x 2.1 x 1.7 protuding into the brain fluid area.  The brain even looks a little loop sided even it is not touching.  It's really scary when you see some foreign object in your brain.  I feel some slight tinkling sensation or may be it's my nerves.  My ENT told me it's normal to have tinkling sensation and feel anxious.  He asked me to let the experts deal with it so I don't get all wrapped up emotionally.  I also told him I joined this group.  His comment is "little knowledge is good but still need to have the specialists work this out".  He also said you never know the speed of growth which may take years or months but don't wait another 6 months.  I need to see a neurologist ASAP.  I am trying to get a neurogist to see me locally this week or next week.  You never know what card you are dealt with.  Life is precious

Mary

[Joef]

I was really oblivious to the whole thing .. after my MRI my GP told me I have a AN .. and it was treatable and gave me a name of an ENT to go see ... at the time, I thought nothing of it .. I said to myself oh good I have a an answer to all these issues and it is treatable . I even went on vacation of all places "Hollywood" ... then I came back .. and SAW the MRI    .. and started looking on the internet about it ... and a month later,  I was back in the LA area. but staying at House for surgery!

[marystro]

Hi Joef,

I have an appointment on July 25 with Dr. Doherty who I think is moving from L.A. to San Diego.  She is joining the USCD Medical Center and is covering for Dr. Jeffrey Harris when he is out.  How was your experience with Dr. Doherty when you were at HEC?

Mary

[marystro]

Does anyone out have Dr. Steven Chang as their doctor at Stanford?  I know Mark has but just want to see if there is anyone else.

Mary

[mellowrama]

Hello Mary,

Welcome to the AN site, I'm sure the info here will help you much, I know it has helped me!
I'm pretty much in the same boat you're in, little over 2cm and researching my options.  After getting feedback from various doc around the country (sent them my mri on cd) they all said I don't have to rush this thing, which at least they all agreed upon    I don't live near a doc that I can visit in person, so I'm researching and planning on visiting a few before making my final decision, and anticipate treatment in August.  Although, I've already decided to avoid surgery if at all possible, because the risks seem as bad as the AN to me and I'm not fond of anyone cutting on me...so I'm fairly certain I'll have ck and try to preserve my hearing, which I'm lucky it is still perfect (main symptom facial tingling).  At first, I was really upset about the an, but now I really feel forturnate because it really could be a lot worse (tumor).  I recommend that you learn all you can, research the docs, and be positive as it seems a lot of people have an's treated and come out just fine!

Melinda

[marystro]

Hello Melinda,

Great to hear from another fellow newbie!  I am looking forward meeting with Dr. Chang (Stanford) on Friday and will hand carry my CD to him.   Then I am meeting with Dr. Bush from San Diego on Monday.  I think Dr. Slattery is going to call me Friday also.  I am positive and that things will work out.  This all happened so fast since I found the MRI result just Monday.  I probably need to slow down a bit to catch my breathe (just went out to do a little basket ball with my husband and son - it was fun).

I'd like to hear from you your decision.  Knowledge makes decision making more effective.

And it's great to have a bunch of folks in this group to cheer you on.  We need that more than ever!!!   

Mary

[marystro]

In case anyone is interested, I met Dr. Chang and his team at Stanford today.  Really nice bunch of relatively young professionals.  Very encouraging in my case.  At least, I was not sent to the operating room to get surgery as Mark predicted.  Given the less appealing optoins of surgery and GK, my still good hearing (can still listen to the phone on my AN side), I am almost certain that I would like CK be my treatment choice.  The only question I still have is if this were such a great medical advance, how come I do not find more people in this site choosing CK over other treatment options?  Just curious to hear your opinions.

Mary

[Mark]

Mary,

I think the answer to your question has several elements not all related to CK compared to all other possible treatment options:

1) The true medical advance of CK is really not related to AN's but the ability to provide a true radiosurgical option to tumors beyond the skull. If one considers the huge number of people having CK for lung, prostate, Liver, spine, stc tumors as protocols are developed it's utilization is pretty dramatic beyond the AN community we all see here.
2) Of the people who have the choice and take the time to explore both AN treatment options, each makes a personal choice based on the information they are given and what sources they get them from, some choose surgery , others radiosurgery
3) Of the people who choose radiosurgery , not all take the time to research the differences between the various machines or are limited to the machine available to them based on the doctor / medical facility they have selected or insurance. GK , Novalis and others are also effective but give up certain features. GK is very accurate but lacks the ability to do FSR and requires a frame. Others can do FSR but sacrifice accuracy compared to GK. CK combines the best of both essentially.
4) I have been participating in this board for almost 5 years and for a while I was the only CK patient and one of only a few radiosurgery patients on it. There are certainly more of both that have actively participated in the past couple of years. Shoegirl, Phyl, and Jamie come to mind quickly as other CK patients that post. I would guess there are around 15-20 folks I know of that started on this board when they were diagnosed and were treated by CK but are no longer active. Fundamentally, this forum serves two communities of AN patients. Those that are newly diagnosed and looking for help in choosing their option and those who have been treated and are looking for support or suggestions on post treatment issues. Based on my observations, very few of those treated by radiosurgery of any type seem to fall in that latter category. So, my theory would be that those folks tend to move on with their life and lose interest in staying involved in a forum like this.

It's hard to prove any of the above scientifically, but it reflects my intuitive belief based on reading posts here for a while.

Mark