ANA Discussion Forum
General Category => AN Issues => Topic started by: Greg M on March 01, 2009, 04:20:17 pm
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I have had phone consultation with Dr.Chang at Stanford, he said I was a great candidate for the CK treatment. He obviously thinks it will be a long term treatment for me right? Why would doctors treat someone with radiation on a brain tumor and it only be a short term fix. He has tons of experience with AN's, he is at the top of his field!! He has over 1200 an's under his belt. Half surgery, half radiation.
So yesterday I went to OSHU in Portland Oregon to see Dr.Delashaw, he also is at the top of his field, so he says. he has done over 600 AN surgeries, about 50 per year. He teaches AN's surgeries, OSHU is a teaching hospital. This is what he said: he recommends taking it out by surgery, suboxipicial approach. He gave me these stats: I have a 5% chance of facial paralysisis, 60% chance at hearing preservation, a 4-5 hour surgery, and 4-6 weeks to a full recovery. He said he didn't like the mid-fossa approach because of the potential damage to the facial nerve. He said in my case the 7th (facial) and 8th (hearing) nerves are in jepordy of damage by the tumor. he also said there is a little cystic componet (fluid temporal) to my tumor, said it was no big deal. It is not close to my brain stem. Now the stuff he really pissed me off about, He said and I quote: "I am the best surgeon in the country, that he published that" He also said that I have a 99-100% chance of full recovery. Does that mean I make it out of surgery alive or no side affects? How can he predict that??? He really does not know what things look like until he's in there!!! O.K. now since I am considering CK/GK, I mentioned to him that i am considering having radiation treatment, he said and i quote "having radiation treatment considering my case is plain silliness". "You are 32 yrs of age and the CK/GK treatment is not a long term treatment. I will be dealing with a growing tumor 20 yrs from now". "The tumor after radiation melds together with the nerves and reduces my chance of hearing and facial function to about 20% post surgery after radiation treatment". He does not consider radiation a treatment for AN's to anyone under 70 yrs of age. I mentioned looking into the endoscopic surgery by SBI with Dr.Shahinian, he says I would never trust him he is just a plastic surgeon!! I think he is more that that, from what I have read about. O.K. this is the worse part he said right at the end of meeting that "two people who he knows of died from the GK treatment hitting the brain stem", what the *^@#*^, Why would he say that to me?? I am not going to be scared into a treatment. There are way more risks in dieing durning surgery than CK/GK treatment.
I am confused why two doctors at the top of there feild gave me two totally diffrerent info for treating AN. He actually called me silly for looking into radiation treatment. He made me feel stupid and totally ingnorent towards my notion that radiation is a reliable treatment for AN's. There are some doctors in the states that are avicating that GK is the new standard treatment for AN's. Surgery second....
So here I am not knowing what to do, I now don't feel comfortable with either treatment. I am limited with who and what treatments I can have. I do not have any money, I am on state aid, and they won't pay for any out of state treatments. I am leaning torwards CK treatment, none in Oregon. I (my wife and 3 yr old son) may have to move to Cali (to maybe get on aid), sorry tax payers, how else do people like me get help, don't want to, just moved from Arizona to Colorado then to Oregon with in the last 6 months. What a pickle! O.K. I just took a deep breath and i recomend to anyone being stressed that breath work does work!! I know things can be worse though, I am blessed in so many ways. In time I will figure it out. I just had to vent a little. Thanks for the ear! I am going to talk to Dr.Schwartz from the House in L.A., this week. I am curious what he will say.. Any comments would be appriciated. More updates to come. I am thankful to Steveman and others who I talked to at the Portland AN meeting yesterday. It was nice to talk in person, thank you.. Nice hats man!!! Peace Greg
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Greg:
Your comment "what a pickle" concisely sums up your situation. I can't say I envy you.
Not having private medical insurance is part of the problem, of course, so that has to be a factor in your treatment decision (who will pay for what). The fact that doctors are biased either for or against microsurgery, irradiation and/or endoscopic surgery is simply a reality many AN patients seeking treatment consults run into. This is large part of the reason choosing a treatment can be so difficult. We all want the most effective treatment with the very best chance for a good outcome but doctors can make that hard to ascertain when they offer conflicting opinions and bash surgery, radiation or endoscopic surgery because they don't think you should go that route.
We don't offer advice on treatment other than to research as much as you can and then use your knowledge and your intuition to come to a reasoned decision. Don't be rushed. Remember, whatever you decide, you'll have to live with any negative consequences, not the doctor advising you. Also, no treatment can be guaranteed to be without some risks. That is the reality.
I wish you well and I'm sure others will offer suggestions on how to deal with this phase of your journey but for now, I'm just glad you were able to vent. I trust tomorrow will be a better day. :)
Jim
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Wow Greg. Sounds like you've found yourself some very opinionated doctors! I dare say, a bit on the arrogant side too!
It sounds like you are in a tough spot, but you are absolutely right not to allow yourself to be bullied into a treatment. I didn't have radiation, but I've never heard that it was not a long term solution. There are lots of people much younger than 70 who have had it done. I don't know where that doctor got his statistics, but I don't think there even are 20 year old studies out there about GK (I could be wrong), so how would he be able to tell you that after 20 years you'd have to fight this battle again?
You will find that some doctors will try to pressure you into whatever their treatment of choice is, even if there are viable options for you. Ideally, you can find someone who will give the facts about all of your options so you can make an informed decision.
I might have missed it, but did you say what size your AN is? There is a lot of information on this site for both radiation and surgery, so I hope you'll have some time to read through it and get as much info as you can.
I'll keep my fingers crossed that you find the answer you're looking for.
And no need to apologize to the taxpayers - as long as you're not out there having octuplets, I'm sure we all understand that sometimes things don't go as planned! ;D
Lori
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Hi Greg,
It was nice to meet you and Amber and Dimitri at the ANA Portland group. I am still amazed at how well 3 year old Dimitri behaved!
The most recent post-CK regrowth case I know of was Kathleen5601 last summer. There are several topics about it, you can search for her name.
Here is one: http://anausa.org/forum/index.php?topic=7054.0
The relevant quote is "Although the surgery was more difficult than normal due to her previous radiation on the tumor, they had absolutely no negative feedback and anticipate a normal recovery. Her doctors are also optimistic that the facial nerve is fully intact, and while only time will tell, they expect that she will not have any facial paralysis."
"More difficult" is not the same as "worse outcome" by any means. Delashaw must have simply made up the statistic of 20% chance of retaining facial nerve function; no published research I know of supports such a claim.
Maybe you can contact Dr. McMenomey, he is another OHSU surgeon, but at least considers GK radiation as a possibility. Also my neurotologist is Dr. Hodgsons here in Portland. His web site is http://www.hodgsonmd.com/ I think he is very knowledgeable and sensible minded, and he is qualified for AN surgery as well. Maybe you can get a referral to one of them.
Surgery is certainly a possible choice of treatment for you, but there is no reason it can't be with a surgeon you respect, instead of one who seems like a bully.
Steve
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Hey Greg
I have a much smaller tumor - and am investigating options but with no real intention of doing anything until it gets a fair bit bigger. Nevertheless, I had a consult with a GK surgeon - and feel somewhat similar, rather rebuffed and made to feel silly and frustrated.
I simply do not understand why this GK versus surgeon debate for smaller tumors and young(ish) people can't be put to rest. SOMEONE must know - the GK surgeons seem to do little to debunk the myths (other than silliness) and the ENT/Neurosurgeons play it from the other side rather aggressively. Then, you get the lovely radiosurgeons that join the ENT/Neurosurgeons - and one is left in a huge pickle of indecisiveness. Add your funding woes (I have half the woes - public Cdn health - I can't leave my province either unless I want to foot the bill), and the treatment certainly could be perceived to be much worse than the disease.
Hugs - keep posting, I am so friggin confused, not sure where to look next (thinking just nowhere - putting my head in the sand and simply hiding). If you figure it out, maybe I can benefit!
Take care
Ann
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Greg -
as others have said, radiation is not generally considered a short-term treatment nor is it only performed in those older than 70.
IMO you should be very wary of any doctor who promises and/or guarantees you anything. So, I'm with Lori; the word is arrogant - or something a little stronger ;) Doctors are human, no matter how good they are, nothing is 100%.
I'd go with your instincts (your gut) on this one. If it quacks like a duck, it generally is a duck!
Jan
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I would veer away from this Dr. Delashaw guy, being that he has a couple of malpractice cases against him. A conservative approach is best, and sounds like he just wants to cut away. AN is a small growing tumor. GK is probably the way to go. He said it was not close to the brain stem, right?. Brain surgery should be the last option, not the first option, unless it is a huge AN. What does Dr. chang say about GK? Is your tumor small enough? Hopefully he can show you the location on the MRI, and where it is in relation to the brain stem.
Maureen
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Hi Greg,
Wow -- Dr. Delashaw may indeed be a very experienced doctor, but very arrogant too. Do not allow yourself to be bullied into something you don't want. This is YOUR choice. The doctors you see for their professional advice should be helping you not trying to scare you into what they want you do to or bad mouthing other doctors. One of the things I liked about my neurotologist and neurosurgeon was that they laid everything out for me and told me my options, as did most of the doctors I saw. Whatever you decide, make sure you are a comfortable as it is possible to be, not scared into something. As Jim said, no doctor can guarantee your outcome -- they can offer a prognosis based on test resultsadn their experience, but that is it.
For surgical purposes, outcome depends on the doctor's experience, tumor size and location and how sticky the tumor is - the smaller the tumor the easier it is to treat. With radiation, the same things apply, except I would guess that how sticky the tumor is probably is not a factor. As to whether or not surgery is more difficult after radiation, there seem to be differing opinions on that, so that may be as individual as everything else to do with an AN.
As for radiation not being a long term solution to an AN -- I've never heard of that either. Statistically, there is a 5% chance of regrowth with radiation and 1 - 2% with surgery. A few of people on this forum have had regrowth with both options, but as you can see, it is a rare occurance.
The best advice I can give you is research, research, research. When you see a doctor for their medical opinion, come armed with information, know what you are talking about to the best of your ability and ask as many questions as you need to.
Best wishes ,
Wendy
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Maybe you can contact Dr. McMenomey, he is another OHSU surgeon, but at least considers GK radiation as a possibility. Also my neurotologist is Dr. Hodgsons here in Portland. His web site is http://www.hodgsonmd.com
I was just prodded into remembering that Dr. McMenomey works with Dr. Delashaw, so maybe Dr. Hodgson is the better choice. He is not a bully by any means.
Steve
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I'm with Jan on this one: If it quacks like a duck, it generally is a duck!
That docor is unbelieveable!!! That is the nicest thing I can say.
Grace
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Hi Greg,
There is much that is out of our control when we deal with tumors. No one can accurately predict how you will recover or what complications, if any, will come your way. One thing you should feel confident about is who you choose to do whatever procedure you have chosen. Arrogance is not an attribute that I would deal with. It sounds like this guy only has one modus operandi--my way or the highway. Ditch him and find another dr. You need to be with someone you can feel safe with, someone who will listen to you.
It is easy to get discouraged. Get busy doing more research on who is available in your area., and talk to anybody who will pick up the phone. We will think positive thoughts for you. Keep us posted!
Priscilla
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Hi Greg
Is your AN actually growing.?
My AN is similar size to yours and my Surgeon said he would only take it out now if I wanted it out. I attended a talk given by a Radiation guy who advised - dont treat AN unless you have to.
Sounds like we have lots of time so dont do anything in a hurry.
Difficult decision but you must be comfortable with the team treating you.
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Hi Greg,
I live in Vancouver and I saw Dr. Modha (young, smart, does surgery and radiosurgery) who treated me with GK at Providence. There is a CK Machine now over here at Legacy Hospital in Salmon Creek. Seems like something could be worked out. If you went to Rebound, they have a whole neurological department and they are in Portland and Vancouver. If you saw somebody from there, then CK would be in Vancouver, but if your doctor is treating you in Oregon, then I don't see why that wouldn't work. Just another thought for you to chew on. Where there is a will, there's a way. Hang in there and Fight, Team, Fight!
One of these days maybe I'll make it to one of the meetings. :)
Sue over in Vancouver USA
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One of these days maybe I'll make it to one of the meetings. :)
The next one is supposedly going to be me showing the group how to use this forum and the "Internets" in general. Sometime in May, I think.
I like your clever idea of using Modha at the Portland Rebound clinic to get treatment at the Vancouver CK facility. Very sly. ;)
Steve
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That's me Steve, ole Sly Sue! ;D
Sue
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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
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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
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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
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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
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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
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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
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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
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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"
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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