ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: tcrnko on October 05, 2006, 11:53:07 pm

Title: Reason for decision
Post by: tcrnko on October 05, 2006, 11:53:07 pm
To Marystro from the flyer58 blog

I chose to have surgical removal for several reasons. 
1)  Yes, this is the primary Kaiser referral.  After talking with some others that have gone thru AN treatment and looking in to the physicians, then and most of all talking with the physicians, I was comfortable with them and the surgical option.
2)  I have been a nurse for 20+ years.  Almost half of that was working in neuroscience.  I have worked with some of the pioneers in neurosurgery like Shoki Yamada and Wolfe Kirsh.  Dr Yamada was a poineer in aneurysm surgery and Dr Kirsh also, hence the development of Kirsh Clips used in treatment of aneurysm.  I was at Loma Linda University when the Proton Generator was booted up and put to use and have seen many other forms of rediation therapy.  I just am not as comfortable with these types of procedures as I am with neurosurgery.  As long as the Doctors have a good rep and good track record, let then do their job.  But believe me, I do not take lightly the opening of a head, especially mine.  But having the background that I do, I feel good about my choice.  The rest, i guess, is in the hands of a higher power.
3)  It is my belief, and often my annoyance, that we have become way too dependent on medicine to care for us as individuals.  Just count the number of drug commercials you see on TV in one nights viewing.  I truly believe in a more holistic approach to most of the ills that plague us.  But I also am proud to know that in this country we have physicians and surgeons andhospitals that can remove these little parasites that cause us grief, and do so with (hopefully) few residual problems.  So Doctors, perform your skill, and may I have a tylenol, please?

Title: Re: Reason for decision
Post by: jvastola on October 06, 2006, 06:04:16 am
OK so help me understand something here.  I was diagnosed 48 hours ago and all of this information is still a bit overwhelming.  You seem to have a fairly unique perspective with your background and all and I am wondering what factors you weighed against CK or GK.

I can see based on your insurance and your experience why you would lean toward surgical options, but I'm having trouble understanding why anyone who has radiation as a option would not go choose that direction.  ( you did not say it was an option, I am just assuming, may be my mistake)

Please understand I am not trying to challange your decision.  I am trying to gather the information involved in making it. 

I wish you all the best and a speedy recovery.

Title: Re: Reason for decision
Post by: marystro on October 06, 2006, 12:29:49 pm

This is such a good recap of my opinion about treatment options.  Like you, why open my head since there is still re-growth risk of surgery.  And CK is such a "pleasant" option with high success rate of 98%.

What is your source of "8 cases" of documented radiosurgery?  Just curious to understand some of these regrowths...

Hi flyer,

Whatever decision you made, we will stand by you.  Also curious if CK was offered as an option by your doctors.  You know there is a new CK center opened in San Diego.  Not sure which Kaiser you are using now.  Best of luck.

Title: Re: Reason for decision
Post by: flier58 on October 06, 2006, 12:56:07 pm
Hi Mary,
I have an appt. scheduled in Stanford with Dr.  Chang.  I believe it is the same location as your treatment  i.e. SFO/SJC area.   I am not sure if SAN facility is affiliated with Stanford. 
Flier 58
Title: Re: Reason for decision
Post by: marystro on October 06, 2006, 01:57:52 pm
Hi Flyer,

Sorry I got you confused with trcnko.  The question was meant for trcnko.

Yes, Stanford's Dr. Chang is my neurosurgeon.  He and Dr. Soltys did the CK treatment for me.  I am very happy with their service.  Please say "hello" to him for me and that my son still has the bowl of candies for him  ;).

Title: Re: Reason for decision
Post by: Sue on October 06, 2006, 04:03:20 pm
Thank you, Bruce, for putting into words, exactly how I feel in regards to my GK treatment.  You expressed my thoughts perfectly!

Jim, welcome to the club. Sorry you had to join us.  But we are glad you found us.  Some people have no choice as far as treatment goes. Some people don't find out about it until the thing is huge and it has to come out of there. Sometimes I wish we all had only one option, because it can be really confusing and difficult to make the decision as to what to do.  I admit I let my doctors decide for me, and my first doctor turned me over to Dr. Modha, who recommended Gamma Knife.  That was the only game in town at that time, however there is now a Cyber Knife so there are great choices now in the Portland/Vancouver area. I was actually very pleased to hear (with my good ear!) that I was not going to have to undergo microsurgery on my head!!  So far I have no regrets to my decision, but I'm only 6 mos. out from my treatment.  Surgery can be a great option..there are lots of people who have had it and go merrily on their way.  Same goes for radiation.  All you can do is read all you can, talk to the best doctors you can with regards to both treatments and go with your gut feeling.  Good luck to you in your treatment, which ever way you decide.

Sue in Vancouver
Title: Re: Reason for decision
Post by: Battyp on October 06, 2006, 04:29:10 pm
I wonder how many never knew about it CK or GK before the surgery?  I know for me I had one choice due to the size and location...if I had the CK or GK choice I would have seriously looked into it as it's less invasive and might have allowed me to continue to work  :(
Title: Re: Reason for decision
Post by: jvastola on October 06, 2006, 08:21:24 pm
Thanks for the welcome everyone.  Wish it was a better club.  I brew award winning homebrew and have been in several Homebew clubs, way more fun.

Title: Re: Reason for decision
Post by: Jim Scott on October 07, 2006, 03:27:53 pm
I'm one of those AN patients who unknowingly harbored a huge tumor when the mounting and debilitating symptoms finally drove me to the doctors office and an MRI, which clearly indicated a 4.5cm Acoustic Neuroma.  Microsurgery - the sooner the better - was the only option for me.  My neurosurgeon chose to use the retrosigmoid approach in order to have the best access to the tumor he later debulked.  I saw no reason to object.  It went well, to say the least.  I am now undergoing fractionalized radiation to kill the remaining tumor cells.  This involves receiving a series (in my case) of 26 low-dose radiation 'treatments' over 26 days (weekends off).   At this writing, I have 6 more to go and cannot wait until it's over and done.  No pain or real side effects, just a growing impatience with the time being spent and the fact that this thing is taking up so much of my life.  Once the radiation is finished, I'll just need semi-annual or annual MRI's for some years, which is fine with me (except for the expense). 

In short, some of us simply had no option but microsurgery..  However, I might have opted for radiation 'surgery' if I had the choice.  I didn't.  However, as my surgery went very well and my recovery was both rapid and very satisfactory, I have no regrets.

Title: Re: Reason for decision
Post by: jvastola on October 08, 2006, 12:05:25 am

Thanks for the input.  Everything helps.  I am still waiting for the MRI repost so I have no real sense of size right now.  I'm very glad to hear that things are working out for you.

Title: Re: Reason for decision
Post by: HeadCase2 on October 09, 2006, 07:24:46 am
  With modern medical technologies, it's great that we have the choice between surgery or radiosurgery.  If you read about the scary AN treatment outcomes as recently as the 1960s, it's amazing how quickly outcomes have improved.  The hard part is trying to decide which one is best for your own situation.  Once you make a decision on how your AN will be treated, go with it and don't second guess yourself in the future. 
  I won't rehash the factors involved with surgery vs. radiosurgery, as you've probably been doing a lot of research.  I'll just relate my personal reasoning.  I just couldn't get past that fact that the brain is irradiated with radiation with radiosurgery.  I know that the rest of the brain, other than the AN site, only receives low doses of radiation.  But to me personally, any radiation of the brain doesn't sound like a good idea.  I also had access to highly experienced (with ANs) top surgeons in a tertiary teaching hospital that is highly ranked nationally in most disciplines.  I chose having a higly skilled surgeon remove the AN over more indiscriminant radiation.  I recognize that not everyone sees the choice in the same way.  That's why you have to decide what you're most comfortable with; surgey, radiation, or watch & wait.
Title: Re: Reason for decision
Post by: tcrnko on October 09, 2006, 09:13:37 am
To all,
Didn't know I would brew such a discussioin.
Anyway, I know that Gamma Knife has been around a while.  It was starting when I was still working with Neuorsurgery patients, and that was about 95"?  I don't know if I mentioned it but event though my tumor is small, I already have braing stem compression.  Because of the compression, and therfore the location of the tmor, my docs preferred I use microsurgery rather than radiation.  And based on my background I agree.  Even with the improvements of directed radiation therapy in the last 10 years, rediating my brainstem isn't a chance I want to take.  I would rather use the surgeon.

One thing I must reiterate that echos is almost all of the statments here, This has to be the patients choice.  If you are not comfortable with your surgeon or his information, you must seek out more until you get to a level of confidence that you will do well with the outcome.  Having a positive attitude going into this event, surgical or radiation, will make the healing process more tolerable whatever the outcome.
Title: Re: Reason for decision
Post by: Gennysmom on October 09, 2006, 11:15:08 am

I've been watching this thread and would love to know what your MRI looks like when it comes back.  Make sure you ask to see it, I think that really helped me in dealing with it.  Then go home and crack open a home brew.

I agree Rob and tcrako....I'm almost glad mine was too big and I didn't have to make the decision, my tumor made it for me...I have several close friends on here who had CK or GK, but I too have issues with radiating my brain.  I think if mine was smaller, I still would have chosen surgery, but that is the choice for me....everyone needs to educate themselves and be at peace with their decision.   And I really agree with the positive attitude...I think it made all the difference in my recovery. 

Good luck everyone! 

Title: Re: Reason for decision
Post by: jvastola on October 10, 2006, 10:07:08 am
Thanks folks,

I have been out of town on buisness for that last few daysand I'm just catching up.  This really helped me understand the various points of view.   I wil keep everyone posted.  I actully have the MRI films in my possession.  To my untrained eye it sure looks like there is pressure on the brain stem, but what do I know?

"Relax don't worry, have a homebrew!"
Title: Re: Reason for decision
Post by: joe94121 on October 10, 2006, 03:05:08 pm
hi, i am also a Kaiser patient, but in Northern California. I will need to go to Redwood City, about 40 miles south of San Francisco for my AN removal in early Dec. 2006. My neurosurgeon is Dr. Stephen L. Nutik. He will be the only surgeon performing the deed. No otologist/Neurotologist on the team and no ENT either. There will be an electrophsyicologist there to monitor my facial/cranial nevres, along with the scrub and attending nurses. Is that normal? How many people will be on your surgical team? Has that been your experience with Kaiser as a neuro. nurse. Have you heard of Dr. Nutik? He has had 500 AN surgeries for the past 20 years.
Title: Re: Reason for decision
Post by: tcrnko on October 10, 2006, 04:32:30 pm
Unfortunately I cannot comment on Kaiser as a Neuro Nurse.  When I did Neuro, I was with Sutter General in Sacramento and Loma Linda University In Sothern Cal.  I am an administrator with Kaiser.
As for the team,  Having a neurosurgeon only do the job is what I am used too.  Adding the Neuro-otologist is an advantage for me.  I am more used to this being primary neurosurgery.  The rest of your team is the usual.  Sorry but I canot comment on your doc either.  Keep researching on this site and others.  I found mine mentioned, I'm sure you will find yours.
Title: Re: Reason for decision
Post by: Mark on October 10, 2006, 05:26:48 pm

I was a Kaiser patient when I was diagnosed in 2001 and was sent to see Dr. Koral and Dr Nutik in redwood city. I didn't like either one and was fortunate my company also had a PPO plan so I opted out to seek out the best in class, not the best of kaiser. I don't know what size your AN is but if radiosurgery is an option for you then Kaiser will send people to Stanford for CK, but you have to push it. Nutik is a surgeon and that's all he understands or will discuss. Most AN procedures outside of Kaiser that I am familiar with use both a neuro and a Oto doctor ( UCSF and Stanford, which are both ranked in top 20 in neurosurgery and I've yet to see a kaiser facility so recognized). If you have to stay within kaiser for surgery, then Nutik is probably your guy, like it or not. I'm sure he is a very competent surgeon, but it might be good to ask him about his outcomes in terms of tumor regrowth, hearing and facial nerve preservation

Title: Re: Reason for decision
Post by: jvastola on November 10, 2006, 09:28:45 am
Just thought I would add that I have decided to go with CK in Boulder Colorado.   May factors involved in the decision but I start on 12/21/06.

thanks for all of the input!!
Title: Re: Reason for decision
Post by: ppearl214 on November 10, 2006, 01:41:42 pm

I believe you may have seen my comments on the CK Patient Support board as well.... and regardless of how decisions are reached, know (and remind yourself) that you are doing the best thing you can for you.

I did my decision making process here (publically) back in Feb of this year. I'm so glad I did it that way. People here shared a wealth of info with me... opinions, expertise, experiences, etc.  Regardless of who chose what for their treatments, the one thing I learned from many here.. and for those of us now "postie" that share with you... never, ever question a decision you make.... stick to your guns... and know you are doing the best possible thing for you.. making the best decision you can make for yourself with all the info you have....and the life you lead.

We're cheering you on... and know that around here.. it doesn't matter what form of treatment someone has, we are all AN'ers... and you know what... even though it seems scary at times... on a positive twist... we make one heck of a family and you don't have to clean your house to accommodate all of us for a holiday meal! :)

Hang in there!