Option, silliness, help????

[Greg M]

      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 

[Jim Scott]

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

[lori67]

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!  

Lori

[sgerrard]

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

[Keeping Up]

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

[leapyrtwins]

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

[moe]

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

[wendysig]

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

[sgerrard]

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

[GRACE1]

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

[msmaggie]

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

[irenuk]

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.

[Sue]

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

[sgerrard]

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

[Sue]

That's me Steve, ole Sly Sue! 

Sue