Decisions...retrosigmoid & debulk OR cyberknife....

[mellowrama]

Hello all,

I just got back from getting 3 different consultations at Barrows (BNI) in Pheonix.  I have not yet had treatment, and my tumor is either a AN or a Meningioma...about 2cm intra and extracanicular.  My spelling my be off but I figure its not big deal 

Anyway, all in all I'm pretty lucky with minimal amount of symptoms, facial tingling and dizzy, but still have great hearing.The visit was an emotional rollercoaster from hell!  I think all the docs were excellent, but they all have they're own opinion, which sometimes differ. 
 

First I saw Dr. Spetzler, a well known neurosureon.   His assistant came in at first (fellow?) and discussed my case, which now I understand is the norm, but didn't settle well with my initially, as I thought then I was'nt going to even see the Dr. that I traveled all this way to see from New Mexico.   Then Dr. Spetzler did come in, and pretty much said the same thing his assistant did -   I was shocked by the visit because he was adament about having retrosimoid surgery to debulk, and then radiation - to hopefully preserve hearing.  Didn't expect that at all, as I've been thinking I was a good candidate for CK, and had not been aware of the concerns to the brain stem from previous docters.  He said the tumor is too close to the brain stem, and that the radiation (at full tumor size) would be like a hammer on it  :-\  He seemed very confident about the surgery going well, particullary due to my age and health being good - if I have surgery I'm sure he' s they guy, but all the concerns that go with surgery were overwhealming! 

Day 2,  I saw Dr. Brackman, a radiation oncologist.  He was great, very well spoken and took a lot of time to go over things with me.  I really liked him, as he was very personable.   I actually expected him not to refer to sugery, but he also thought sugery might be the best way to go for different reasons than Spetzler.  He was concerned about the trigenminal nerve, and it being squashed or damaged to the point that I may experience the pain that it can cause.  That hour,  he posted my case on a tele-conference that was getting ready to take place, with many doctors of different backgrounds.  Evidently some of the doctors thought CK would be best!  What a roller coaster....but I was glad to hear it!  Within the next hour I saw Dr. Kris Smith (neurosurgeon) as he thought CK would work best and even got me in for a quick appointment!  He was very nice, informative and thorough.  He did not seem to have the concerns about the brains stem and radiation, nor about the trigenminal nerve being effected.  He seems non-biased, as he does GK, CK and surgery.
Now I'm back leaning toward ck. 

Whew!  Now I know why so many people get overwhelmed, confused, etc!  The whole experience was exhausting...and now its decision time as I should do something within the next few months.   Hopefully my experience will help others with their expectations for dr visits, etc.  Please let me know any of your thoughts!

Thanks, Melinda

[jamie]

Hi Melinda,

I had CK a year ago at Barrows for a 2.3 cm neuroma, not acoustic but a bit lower. Everything went great and so far my quality of life is no different than it's ever been. I saw the neurosurgeon first who fo course recommended the debulk followed by CK, then I saw Dr. Kresl (excellent doc), who said there would be no real reason to risk both procedures and recommended CK alone. I went with that and haven't had ANY side effects at all. I know lower nerves may be more radio-resistant, but there's alot of AN'ers here who had CK alone as well, I'm sure they'll chime in as well. Good luck, BNI is great...

[mellowrama]

Hi Jamie,

Thanks for your response, I'm glad things have been going great for you since the CK treatment.  Have you had any MRI's since the treatment?  If so, does it have any signs of death or shrinkage?

I'm not sure where my tumor is related "lower"...the Dr. that mentioned surgery didn't elaborate a whole lot on the location other than "its too close to the brain stem"....but that seems to be the norm for what I've read everywhere regarding the feedback people get from neurosurgeons.

thanks, melinda

[Chris]

I don't think most of you realise how lucky you are to live in a country where you are given so much information and choices. I was given a fair bit of info on surgery and immediately referred to a surgeon. I was given a bit of info on radiation and was told to let the specialist know if I was interested so that he could refer me to someone. I couldn't get hold of the specialist when I rang back so I did most of the research myself. I had been given the name of a radiation oncologist in Sydney so I rang various hospitals until I managed to reach him. The rest of my research was done via the internet. Australia is a wonderful place to live and I would not change it for anything however I believe we are behind the times in some respects and have a lot to learn.
Regards
Chris

[mellowrama]

Hi Chris,

I do feel very fortunate and lucky that there are choices, etc. The internet/AN site has been the biggest  resource and support for me too. I'm so glad to live in a time when we have the interenet as a resource, and that there are options that we have today rather than even just a decade ago.

All the doctors (except for hearing tests)  I've seen I self referred myself based on internet findings/contacts, and I had to travel to see them out of state.  The cyberknife site has also been a tremedous resource for me, as I've gotten as much feedback from the docs/others there as I have from any doctor one-on one.

Everything I've read about having an AN is that you need to see a specialist, someone that works a lot with these things.  Have you sent your films to any doctors in the US/elsewhere?  All the ones I sent my films to were quick to respond...perhaps you could get some good information on your situation that way before having to travel (if you do). 

best wishes, melinda

[ppearl214]

HI Melinda,

I know you've seen my post on the CK support board and here. You know what I am partial too...

Phyl

(regardless of what you decide, you stand by your decision as it's the best for you! Never forget that, never regret or 2nd question your choice)

[Chris]

Hi Melinda,
I feel I was lucky enough to have the intelligence (well....) and resources to be able to do enough research myself. My specialist in Sydney is absolutely wonderful and has been doing this treatment for many years. He was very informative and did not try to sway me one way or the other. Given what I know now, and continue to learn, I am happy with my decision. I now have confidence in my Brisbane specialist too. I just feel sorry for those people who make their decisions based on little or conflicting information, which I got plenty of initially. By the way, a professor in America, when discussing any link between radiation treatment and cancer, said "look what happened when they dropped the bomb". Luckily I spoke to intelligent specialists after that.
Regards
Chris

[shoegirl]

Hi Melinda,

We traded some emails a few months ago on the CK Board.  I had CK at Barrow's with Dr. Kresl, Dr. Daspit, and Dr. Shetter.  I have heard wonderul things about all of the doctors you mentioned in your post.  Had a very positive experience at Barrow's.   I'll soon be going for my 9 month followup MRI.  Like Jamie, I feel great.   I live in Phoenix, so if you decide to have treatment here - please let me know if you need help with anything.  BTW, did you meet with an Neuro-ENT while you were there?

Best Wishes, Suzanne

[mellowrama]

Hi Suzanne,

Yes, its good to hear from you.  I've thought a lot about you as I made my way around Phoenix and Barrows! 

I'm so glad to hear you're doing well, and good things about the docs, and had a good experience, it really makes me feel even better about moving forward with my decision.  I'm waiting to hear back for scheduling now, but unless something changes I will proceed with CK and the docs I met there.  I had hoped to meet with Dr. Daspit, but he was on vacation, so no, I did not meet with a Neuro-Ent doc.  Now I'm feeling anxious to get treatment!

best regards, melinda