Gathering pre-treatment info for my Mom, we need some help please?

[DaughterMeg]

Hi all,
I am new to this site, and thrilled at the amount of support and information available here!
My Mom was diagnosed about 4 weeks ago.  She's done some great homework so far and has kept a great outlook, but frankly she's starting to feel like she's swimming in the info and it's getting tiresome for her (as I'm sure everyone understands).  So I'm hoping that I, with some help from this forum, can help point her in the next direction.  She is 69 years old, a very active grandmother of 4, still working as an Administrative Assistant.  Her AN was diagnosed as being on the 8th cranial nerve, at the right CP angle.  It's 3 cm, and it appears to not be growing into the auditory canal.

She has seen 3 otolaryngologists, 2 neurosurgeons, and 2 radiosurgeons so far.  What they've told her is that there is a "fair bit" of compression on the brain stem, her hearing is surprisingly good given the size of it, and she can do either surgery or radiation.  Her symptoms are poor balance and hearing loss in the AN side, a "full" feeling in her ear, and some facial tingling.  No one is making any strong recommendations, but as far as we can tell her best options seem to be 1) sub-occipital surgery to remove the inside of the tumor, leaving the capsule so as to not disturb the facial nerve.  or 2) radiation- but she is not a candidate for Gamma Knife.  So far, she has MUCH more info about microsurgery, not much about radiation.

I should add- she lives in Western NY, I live in southern Ohio, and we have family in Cleveland- making those 3 places most convenient for treatment.

Oh, do we still have questions! Let's start with these:

1) If she's not a candidate for Gamma Knife, does anyone have experience with the other radiosurgical methods- in this size of tumor and at her age?
2) I've seen quite a bit posted about CyberKnife- is this new?  Who is doing it?
3) Is there a best center for her to consult with about Radiosurgical options?
4) We have met with, and been impressed by the Cincinnati team of Dr. Pensak and Dr. Theodosoupolis (for microsurgery)- (they treat 40-50 a year surgically), but have not seen much discussion about them on the posts.  Does anyone have experience with them to share?
5) She has also been told that her AN has a cysctic component and that it could impact results with radiation.  Has anyone ever heard this before?

I'll stop there. 
Thank you all in advance for your help, we're really grateful to you all for sharing your experiences!
-Meg


 

[Lorenzo]

HI Meg,

Welcome to the forum. You'll find some really helpful people here.

I can only really talk about CK, as that is what I had. A great site to visit to find out more about it is:

http://www.cyberknifesupport.org/forum/

they have an incredible amount of information there. But best of all, some of the top experts in the field of radiosurgery are part of the forum, and they don't just use CyberKnife. The doctors there are very approachable and very willing to answer any questions you may have regarding radiosurgery. They can also review films if you send them to them. That's what I did, and that's how I ended up having CK at Stanford. CK was invented there about 15 years ago, so it's not new, no. There are a lot of centres around the US and you can find a list at this address:

http://www.accuray.com/CyberKnifeCenters/index.aspx

MY An was 24mm at the time of diagnosis and 26mm at the time of treatment. It swelled to roughly 30+mm. It touched and slightly pushed on the brain stem.

I hope this helps a little.

All the best, Lorenzo

[DaughterMeg]

Lorenzo,
Thanks for your reply, and congrats- I saw your note "doing great now"- that is wonderful!  I spent some time today on the sites you recommended- wow!  I did just get off the phone with my Mom, and she will likely chime in to this discussion herself tomorrow (long day, she's too tired to talk AN's anymore today).  We did find a Cyberknife location in Cleveland on the site you shared, she's planning to be  there next week so she will try to speak with these folks as well.   
I know my Mom has many more questions, I'll encourage her to chat further with you herself.  Thank you Lorenzo, you just gave us another avenue to consider - and while more info is overwhelming, it is still a good thing.  Thanks!
-Meg

[Kaybo]

Meg~
Hello!  So great that you are trying to help your mom out.  My mom just turned 69 also.  I had surgery a while ago, but if I can be of any help, I certainly would.  The most I can offer you is how great my life is 12 years out!  Please feel free to contact me if I can help or if you or your mom would  just like to chat!  You can send me a PM (on side).  Check out my blog if you want (address at bottom!).

K

[Dana]

Another consideration for your mom is that we heal more slowly as we grow older.  I just think it's something to seriously add to the mix of factors in making a decision. 
Dana

[CMRochester]

DaughterMeg's mom here.
This is a very helpful site. 
Lorenzo - I checked the CK site and had a brief discussion about it with the last Neurosugeon I saw (yesterday). 
So far the strongest recos for me have been debulking followed by GK or FSR if needed (approx 3cm currently).
How important are the #s for treatment of ANs - 30, 40, 50 per year?  Is more really better?  When does one stop looking and just make the appointment - especially when one feels comfortable with all of the Drs interviewed?

Has anyone talked with any of the Drs in Cincinnati or Cleveland (Cleveland Clinic or Uviversity Hospital)?
Thanks
Ceci

[lori67]

Hi Ceci - glad you joined in.  That's very sweet of your daughter to be so concerned about you - you must have raised her right!!

I think the numbers are important in that you want a doctor who has treated AN's before and has successfully performed the surgery or radiation.  I don't think many people would trust their brain to the new guy who didn't have any experience under his (or her) belt yet.  The doctors will tell you how many of these procedures they have done and may be able to refer you to previous patients to speak to about their experiences.  I don't think any good doctor would be offended by a patient wanting to know his track record.

I can tell you that when I had found the "right" doctor for me, I just knew.  Women's intuition?  I just had complete trust in him and really was never nervous about the whole thing.  It may sound weird, but I just sortof had a feeling that this was the right guy for the job.  It would be nice if we could all feel like that when we knew we were doing the right thing, but sometimes it's not that easy.  Hopefully, when you find "Dr. Right", you'll just feel that it's right for you.

Hopefully, all the information isn't too overwhelming.  It's a lot to be thrown at you all at once.  But, we've all been in your shoes at one time and I can say that I think most of us are doing quite well.

Good luck to you whatever treatment you decide on.  Make sure to keep us posted!
Lori
p.s  I used to live in Upstate NY... sure is cold up there!! 

[leapyrtwins]

I can tell you that when I had found the "right" doctor for me, I just knew.  Women's intuition?  I just had complete trust in him and really was never nervous about the whole thing.  It may sound weird, but I just sortof had a feeling that this was the right guy for the job. 

Strange, I had the same feeling, but obviously with a different doctor 

There's a lot to be said for "going with your gut" - after doing your research, of course.  I think whatever decision someone makes, they'll know when it's right for them.

[sgerrard]

When does one stop looking and just make the appointment - especially when one feels comfortable with all of the Drs interviewed?

Hi Ceci, mother of Meg:

One day, you will realize that you know what you are going to do; soon after that, you will make the call. It sounds to me like you may be getting close.

I hope Jim Scott comes along to tell you about his experience with surgery + FSR, but I will spill the beans and tell you that it worked like a charm for him. The combo seems to offer the best of both: removing the bulk of a large tumor that is too close to the brain stem, with reduced risk of nerve damage by leaving the tricky bits; followed by radiation to polish off the remnants without further trauma.

It's a lot of information to wade through and ponder, and an important decision. Stick with it; it won't be too long now before you know what to do.

Best wishes,

Steve
 

[CMRochester]

Thanks to all of you for your words of encouragement. 

I know that I have been doing all the right things so far, and am amazed at how much I have learned in just a month.  What did we ever do before the internet?  And this forum is wonderful. 

I feel I am getting close to making my decision.  I have two more appointments (in Cleveland) on Monday - that will make a total of 9 consultations.  After that, I will compare all my notes and hopefully be on my way to scheduling a procedure soon.

I have such a strong "army" of support -- my family, my friends, my church, my work -- how can I not make a right decision with all these people pulling for me to make the best decision for myself?  I feel confident that I will come through this just fine.  I had a total hip replacement a year ago, and everyone who knows me marvels at how well I recovered from that.  I know the same will be true for whatever procedure I chose to bring "Wally" to his demise.

Steve - I did hear from Jim, in a PM to my daughter, and he was very helpful

Lori - your are right it is cold in Upstate NY.  We had several inches of snow today --- I for one am ready for spring weather.

Ceci

[leapyrtwins]

Ceci -

My dad has had both his hips replaced, so I know a little about what that is like. 

I, too, am confident that you will get through this just fine.

Jan

[sgerrard]

My Dad is thinking about having a hip replacement - and he will turn 87 in May. Of course we wish he had done something sooner, but now he is feeling that he will be unable to walk at all if he doesn't do something. I don't know what to think about it, really. These days, though, they can probably pull it off, and he is in good health otherwise, so maybe it is not that big a deal.

Steve

[leapyrtwins]

Steve -

hip surgery can be a great thing.  My father's mother, obviously my grandmother, had both her hips replaced when she was in her 90s.  She was able to go from walking with a walker to walking without one.  She said it was the best thing she ever did and regretted not doing it earlier in her life.

My dad is only 78, but he had one hip replaced 19 years ago and the other replaced 12 years ago.  They are supposed to have a "life" of 15 years, so he's thinking about having the first one replaced some time in the next year.

With a family history like this, I'll probably have to have at least one of my hips replaced at some point in my life.  In the meantime, I like to tell my dad that between his hip surgeries and my AN & BAHA surgeries, we have one more thing in common - we both have titanium "parts" 

Jan

 

[Melissa778]

I am from the Toledo Ohio area.....I did not get to meet with Drs Pensak and Theo(insurance issues).....but several on here have.....Ohio and Ohio Also both had surgery within days of each other a week or so ago......check out there posts.  I have heard WONDERFUL things from people here about there team.  I did see a Dr. Jueng Lee at Cleveland Clinic, I was not that impressed, but you may want to talk to him.  Maybe you'll get a different feel from him than I did.  I am having mine done translab in 31 days at the Michigan Ear Insitute in Southfield, MI.  I also know several other Ohioan's have seen a Dr. Megerian, I believe at Univ Hospital in Cleveland?  Also some have posted about a Dr Brad Welling in the Columbus area.  Do a search for "Ohio" and that will brign up some of the recent posts on Ohio docs and fellow Ohioans......Best of luck to you and your mother.

Melissa 

[oHIo]

Hi...four weeks post op today from a translab at University Hospital in Cincinnati.  My surgeons were not Dr. Pensak and Theodosopolos (Ohio Also used that team) but I was extremely pleased with both of my surgeons and the nursing care.  I had excellent hearing before surgery which made my decision when to have it a little more difficult. 

Overall health is certainly more of a factor in considering treatment than age.  Sixty nine years young and active is good. 

Please feel free to PM me with any questions.