Option, silliness, help????

[QRM]

Greg,

Dr Schwartz, at the HEI was on the fence re my tumour he said GK or surgery would be suitable, though interesting he was also very against endoscopic surgery in the skull.
Like yours mine was cystic and that had good and bad points, good point was the tumour, the meaty bit is smaller than the size indicated, its like an inflated balloon, the down side is in surgery the nerves may run along the outer membrane of the cyst which means some of the tumour has to remain behind to preserve facial use.  In GK, the liquid bit may be a tad unpredictable to the radiation.

In the end Dr. Schwartz managed to get all my tumour out with no facial paralysis except for a strange taste to my tongue.

Anyway all the best

Rick

[NancyMc]

Rick (QRM),

Thank you for that definitive analysis of the cystic component of an AN.  I have the same.  I love that we can have vicarious office visits with each others' specialists on this forum.

Was an architect

Once and architect, always an architect.
Nancy
has-been architect

[suboo73]

Hi Greg!  So glad you have found this AN forum and these wonderful, wonderful people! 
(I don't know what i would do without them...!)  I think you have every right to vent -wow, there are some other bizarre stories here on the forum like yours - i don't think i would be motivated to see Dr. D. again.

Anyway - since i am from the East Coast, i can't help you with specific information about doctors on the West Coast.
But, if i have any tumor growth next time around, i will be on the phone promptly with Dr. Chang about CK myself.
Sounds like you have had consults with some of the very best at House and Stanford!
So keep researching and researching until you know what is right for you.  Although i choose W & W for the moment, i believe i already know what my 'gut' tells me for treatment.  I think you will know when you meet the right doctor with the right procedure for your.
I don't know your options for treatment without having private insurance...  But i sure like Sue's idea for using the Rebound Clinic to end up with CK treatment in Vancouver! 

All my best to you and your family.
My thoughts and prayers are with you.

Sincerely,
Sue

[Greg M]

Thanks everyone for your posts. They all help! o.k. about the cystic component in my tumor? Dr.Chang said he did not see any cystic in my tumor,   but he just read the MRI report and did not look at my MRI before he talked to me.? I guess it would say it in the report but I wanted him to really look at my MRI before talking to me. Dr.Delashaw said he seen a little.  I do not know if I even have a cystic tumor because I heard two different things, well better wait for the third and fourth opinion. That's interesting about what the cystic component does during treatment though, that does not make me so happy, but it is what it is. I have also heard (read post, Australia doctor) that if the tumor has a large cystic component to it that the radiation is not a good idea, because occasionally the cyst part can grow quite rapidly and not to use radiation because sometimes when you get radiation, particularly on AN's with cysts inside them they can swell afterwards and sometimes the cyst part can start growing with the radiation.  Also the radiation doesn't get to the other side of the AN behind the cyst. Has anyone heard of this?   Jese lou ese, Acoustic Nueroma has a smelly aroma..... Now i really don't know what to do. I feel like I am the doctor but I don't know what the heck I am talking about. I thought we can trust these doctors, we are placing our sacred lifes in there hands and now here I am researching my own case from different information from different doctors. Every thing seems so confusing, what to do, bad info here, good info here, not them, yes them, no money - forget it no treatment, where is the humanity? who do we trust? anywho--poo bad aroma

Sue, Fight Team Fight, right on, that made me feel like all you people really do care for me. Thanks sooo much. Your idea about CK in Van. I will look into that.

Steve, my ENT refered me to Dr.Hodgsons, he has been booked solid. I see him on the 19th. I'm glad to hear that you found him to be mentaly stable.

Rick, thanks for bringing up the whole cystic tumor thing, it's something to think about but it seems to suck either way.

Irenuk, I have yet to get my 3 month MRI to see if there is any growth. I had my first at the end of Dec. 08, there may be a miss conception on how these tumors grow. Some feel like they grow 1/2mm per year but I have read that they grow in spurts, they will be stable for months or years then all of a sudden boom, they sprout up with growth. Iv'e read that in some cases they can double in size in 3 months. Now all tumors are unique to each individual. The question is do you want to get it while it's at it's smallest size or wait till it grows a bit, then do something about it. If you wait till it gets bigger it sounds like it's harder to treat on either end of the treatmnet. I have read though that 30% of AN's stop growing on there own. So what a pickle we are all in. I say listen to your body, spirit, and your symptoms. But it can grow larger and you not feel any symptoms. Then any treatment is more difficult.  I do apprciate you mentioning I have time but what is time anyway??

Thanks to you all, my sincere prayers are with you. Blessings come in disguise. Peace Greg

[Sue]

Thanks Greg, for the kind words.  Of course we care about you.  You and many, many people with AN's have had to fight to get the right diagnosis, fight to find the right doctor, fight for the right treatment that they wanted, fight insurance to accommodate going out of state to seek the best doctors, fight their own families to understand what they were going through, and to fight for quality after-care in case they were one of the un-lucky ones who ended up with severe complications (headaches, etc).  I've been hanging around here for nearly 3 years, as my initial diagnosis was the first part of March, 2006, and I've read about many people who have had some real battles to get what they wanted. 

I was one of the lucky ones, I guess, maybe because of my age and size of my AN, and the doctors I went to.  I was guided into having GK, and it seemed like a good idea to me, so I had my treatment in April of 2006 and I haven't regretted my decision.  I certainly do wish I never had this stupid thing, but that's something that I couldn't control, so whaddaya gonna do?  That's life.

Anyway, I sure hope it all works out for you.

Sue in Vancouver

[Jackie]

Thanks everyone for your posts. They all help! o.k. about the cystic component in my tumor? Dr.Chang said he did not see any cystic in my tumor,   but he just read the MRI report and did not look at my MRI before he talked to me.? I guess it would say it in the report but I wanted him to really look at my MRI before talking to me. Dr.Delashaw said he seen a little.  I do not know if I even have a cystic tumor because I heard two different things, well better wait for the third and fourth opinion. That's interesting about what the cystic component does during treatment though, that does not make me so happy, but it is what it is. I have also heard (read post, Australia doctor) that if the tumor has a large cystic component to it that the radiation is not a good idea, because occasionally the cyst part can grow quite rapidly and not to use radiation because sometimes when you get radiation, particularly on AN's with cysts inside them they can swell afterwards and sometimes the cyst part can start growing with the radiation.  Also the radiation doesn't get to the other side of the AN behind the cyst. Has anyone heard of this?   Jese lou ese, Acoustic Nueroma has a smelly aroma..... Now i really don't know what to do. I feel like I am the doctor but I don't know what the heck I am talking about. I thought we can trust these doctors, we are placing our sacred lifes in there hands and now here I am researching my own case from different information from different doctors. Every thing seems so confusing, what to do, bad info here, good info here, not them, yes them, no money - forget it no treatment, where is the humanity? who do we trust? anywho--poo bad aroma

Sue, Fight Team Fight, right on, that made me feel like all you people really do care for me. Thanks sooo much. Your idea about CK in Van. I will look into that.

Steve, my ENT refered me to Dr.Hodgsons, he has been booked solid. I see him on the 19th. I'm glad to hear that you found him to be mentaly stable.

Rick, thanks for bringing up the whole cystic tumor thing, it's something to think about but it seems to suck either way.

Irenuk, I have yet to get my 3 month MRI to see if there is any growth. I had my first at the end of Dec. 08, there may be a miss conception on how these tumors grow. Some feel like they grow 1/2mm per year but I have read that they grow in spurts, they will be stable for months or years then all of a sudden boom, they sprout up with growth. Iv'e read that in some cases they can double in size in 3 months. Now all tumors are unique to each individual. The question is do you want to get it while it's at it's smallest size or wait till it grows a bit, then do something about it. If you wait till it gets bigger it sounds like it's harder to treat on either end of the treatmnet. I have read though that 30% of AN's stop growing on there own. So what a pickle we are all in. I say listen to your body, spirit, and your symptoms. But it can grow larger and you not feel any symptoms. Then any treatment is more difficult.  I do apprciate you mentioning I have time but what is time anyway??

Thanks to you all, my sincere prayers are with you. Blessings come in disguise. Peace Greg

Hello Greg,

We met at the An meeting on Saturday. You keep hearing that you have time on your side, and you do because of your tumor size being just over a cm. The reason everyone says time is on your side is because up until 3 cm. you have all options at your disposal ie. being surgery, radiation, or w&w. Now your financial capability may be the limiting issue. I agree with you that it should not be a factor, but unfortunately the health industry as I was told many years ago, is not a charity, but to think of them as a Retail outlet!

Also the growth spurts that some AN's have taken are really very rare! So again, take your time, have your consults and compare, you'll know what feels right after your due diligence. Wishing you the very best,
Jackie

[sgerrard]

Also the radiation doesn't get to the other side of the AN behind the cyst. Has anyone heard of this?

I think I have seen that article. It must be about the old radiotherapy style, since with all stereotactic radiation, whether FSR, GK, or CK, the beams come in from all directions, so some will hit every side of the AN. Dr. Medbery on the CK forum has said that cystic is usually not a problem, unless it is large cyst in a large AN.

I feel like I am the doctor but I don't know what the heck I am talking about.

I remember having that feeling. How am I, the guy who knows the least about ANs, supposed to make the final decision? 

Steve, my ENT referred me to Dr.Hodgson, he has been booked solid. I see him on the 19th.

That's partly my fault, I see him on the 16th.

Take care, and take a little time to sort out what is what, and what you need and want to do. This is not urgent.

Steve

[irenuk]

Irenuk, I have yet to get my 3 month MRI to see if there is any growth. I had my first at the end of Dec. 08, there may be a miss conception on how these tumors grow. Some feel like they grow 1/2mm per year but I have read that they grow in spurts, they will be stable for months or years then all of a sudden boom, they sprout up with growth. Iv'e read that in some cases they can double in size in 3 months. Now all tumors are unique to each individual. The question is do you want to get it while it's at it's smallest size or wait till it grows a bit, then do something about it. If you wait till it gets bigger it sounds like it's harder to treat on either end of the treatmnet. I have read though that 30% of AN's stop growing on there own. So what a pickle we are all in. I say listen to your body, spirit, and your symptoms. But it can grow larger and you not feel any symptoms. Then any treatment is more difficult.  I do apprciate you mentioning I have time but what is time anyway??

Hi Greg
my surgeon said the AN gets to about 2.5cm before it really starts to affect the facial nerve.  Our AN's are considered small at their size.  Im thinking I dont want treatment if I can avoid it  so if I can live with my symptoms and the AN doesnt get any bigger all the better.  My surgeon also said he had operated on AN's after radiation and didnt find them more difficult.  Guess it depends on the experience of the surgeon and whats in front of him.

So, by "time" I am personally thinking the growth  from just over 1cm to 2.5cm gives me a good few years if it grows at the average rate.  With an added bit of luck it may not grow at all or maybe stop growing at some time - even after a growth spurt.  So I guess that is what "wait and see" is all about.

Waiting on my second scan was stressful as I thought the AN was getting bigger - what a relief when they told me it had not.  The stress seems to make the symptoms worse.

Im worried about radiation as an option as in the UK we dont have stats on treatment after 20years.  Personally I think I would spend the rest of my life worrying will I be the unlucky one that ends up with a malignant tumour because of the treatment.  I know the risk is low but then again the risk of getting an AN to begin with is low - and I got it!  What do others think?  Does age come in to it when people choose to have radiation treatment as an option.?

I agree "what a pickle"

[macintosh]

My opinion (and I am a patient, not a doctor) is that age shouldn't matter in making a decision. A website that is good at sorting out questions like that with evidence from peer-reviewed medical studies is from the University of Pittsburgh,

www.acousticneuroma.neurosurgery.pitt.edu

In one study they cite, you find out that when neurosurgeons are asked what they would do if they had an AN, a surprisingly high number will put off any treatment as long as possible, even if the AN shows slow growth.

As far as long term effects of radiation goes, my sense from reading a lot of medical literature is that the chances of AN radiation causing a malignancy are significantly lower than the chances of dropping dead from a hospital infection after any surgery.

Maybe the two most important things to understand in making a decision is that you have plenty of time to research your options, and you cannot let anyone push you into a decision. When a doctor tells you that "two people who he knows of died from the GK treatment hitting the brain stem", all I can say is that I would love to see the citation for that in the peer-reviewed medical literature. I've never seen anything remotely like it. Perhaps he is mistaken.

So good luck Greg and Irenuk (Irene?) in making your decisions. Believe me--it gets easier as you figure it out,

Mac