Beginning Stages of Research

[pearchica]

Hey Gang: I am a recently diagnosed vestibular Shwannoma.  I have been researching for about 3 weeks now. My original surgeon in Sacramento is recommending surgery to debulk the majority tumor and then gamma knife the rest so my facial nerves are preserved. I have sent my MIR's to the House Institute (Los Angeles, CA) and I am also going to go to Stanford ENT(Palo Alto, CA) for more information.  Any sources I should consider for further research?  By the way this forum as been a world of relief. I wish I had logged on 3 weeks ago.  I made the mistake of telling my family prior to my consulation with the surgeon and consequently gave the family some outdated information ie: 16 hours of surgery according to the ENT guy when in fact it is 3-5 on average.  (Family also was visualizing coffin depsite my reassurance that this is a BENIGN tumor ).   My balance test shows that my right ear is compensating for my left (where the VS is). Overall I feel no rush to get this thing out, I don't have dizziness, I do have hearing loss (about 50%) and really compared to the other maladies out there, I feel like I am getting off good. (Easy to say now as I haven't done surgery, gamma or ck).Thanks in advance for your support and hard work.

[tony]

Good luck in your search - can I just say beware surgery prediction times
sometimes the person making the prediction means
how long their "bit" is....ignoring the fact that
the team that follows to patch up/finish off
may take another two hours or more
- in any case its not a job to rush to finish early
Family may panic a bit if they think things are running behind the clock
keep it vague
Best regards
Tony

[Lorenzo]

Welcome to the family. You seem to have a few goood options alright, and the right attitude. Just to let you know, Dr Chang at Stanford does both radiosurgery and microsurgery, so he might be a good person to talk to.
Good luck with your search.
Lorenzo

[Desilu]

Hi,

It seems that you have picked some of the best places around. Please make sure that you are comfortable with your doctors, you are putting your life in their hands. Go with your gut feeling. I wish you the best with your research. If you choose to go the surgery route, I can help you with that (House). Just shoot me an email. If not, there are a bunch of people on this site that can help you with the less evasive route. Good luck to you!  Ann

[Obita]

Welcome to the forum Pearchica:

It sounds like you are well on your way in finding the right doctor for the job. 

Have you read anything on the Skull Base Institute?  If you decide on surgery, you might want to give them a look.  There have been a few forum members that have had surgery there recently and they are very happy with the results.  At SBI, they use the endoscopic approach so the hole in the skull is the size of a dime.

Hopefully, your AN is in such a place that radiation can be an option for you.  Surgery is no picnic, but its not the end of the world either.  If you have surgical questions, you can write to me anytime.  I am the same as I was before surgery only I am tumorless (yippee) but deaf in the left.

Good luck and I will be watching for updates!!  Kathy

[BevM]

I echo Lorenzo, I had CK treatment at Stanford in October and I am a Kaiser patilent.  I did a lot of research on both open surgery and CK and believe that it is well worth your time to throughly explore the options.  The forum has been invaluable as well as the Cyberknife patient support site. Stanford is an excellent choice especially if you want to consider CK as they do both.  I understand that the House Ear Clinic is also now doing both although their expertise and experience is open surgery.

I am happy to have personal contact with you if you would like more detailed information.  I live in Petaluma  so we are "sort of" neighbors. A few of us have talked about a Northern California gathering of AN'ers at some point.

I wish you well in your journey.

Bev

[pearchica]

Wow everyone! Thanks for the great input- I REALLY APPRECIATE it- Annie

[Gennysmom]

Welcome Annie!

Welcome to our world!     I think you are looking at 2 great places to get this work done.  You are right, it's not coffin time, and with your 2x2, you have plenty of time to consider options.  In speaking of your family, I can tell you that no matter what, it will rattle them...my mom's dad was a surgeon and she knows medical stuff inside and out, but she said that didn't matter, no matter how old her child was, it still freaked her out.  I was really surprized at how it messed her up the first 2-3 weeks after surgery, and she was my caretaker!  You also have quite a few great patient resources in your area, as did I, and it really helped me to meet some of them...I would highly reccomend it.

Keep us updated on your path! 

Kathleen

[Battyp]

HI Annie and welcome.  Boy your positive attitude comes through in your type!  Keep that attitude!!!
Surgery times vary and make sure you stress to your family in the waiting area that just because the dr said 5 hours doesn't mean it will not take longer.  I was told 6 and mine was 9.  My parents were beside themself with worry those last 3 hours.  I guess I decided I was tired and started given the doc fits  LOL  They can't tell if the tumor is going to be sticky or encapsulated until they are in there.  Sticky means they have to go slower and peel each layer off like an onion skin and you dont' want them rushing that to beat the clock!

Sounds like you are doing your research and making sound choices..they can just wait on picking out a coffin! We all have too much life left to live!  Please know we are all here to answer any questions or concerns you may have, listen to you vent and celebrate your joys.  We're one big happy cyber family here! 

Michelle

[Jim Scott]

pearchica:

Just wanted say 'hi' and tell you that you seem to be totally on the right track.

As my signature shows, I had a large AN 'de-bulked' via microsurgery and then underwent FSR treatments for 5 weeks.  No real complications from either treatment and my pre-op symptoms disappeared following the surgery.  I'm fine, now, some 7 months post-op and 3 months post-FSR.  This two-tiered method seems to be the trend in treating vestibular schwannomas (more commonly known as acoustic neuromas) - especially larger tumors.   Keep researching.  You are geographically located where access to the best doctors and facilities are, so I'm sure you'll be fine.  Keep up the positive attitude.  AN's are a hassle but can be dealt with successfully.  You will. 

Jim

[pearchica]

Hey Gang: thanks for your support these past weeks. I really appreciate it. Second opinion from Dr. de la Cruz at the House Institute was that I have a translab for complete removal with no radiation treatment.  I had my third consultation today with Stanford ENT who recommended that I have a regtrosigmoid with the hope that we have a 5-10% chance of hearing conservation- no radiation treatment.  I have decided to go with Stanford with Dr. Robert Jackler as he is the head of Stanford ENT and is the first to suggest that I might have at least a chance of hearing conservation. So I'm scheduled for surgery Valentines Day.  Stanford "the home of the cyber knife" felt it was not in my best interest to have cyber knife given that chance albeit small for hearing conservation. Also Dr. Jackler gave me the rationale behind why cyber not good for me, ie: young, don't know long term outcomes, you are are pushing the medium size range 2.5CM of the tumor sizing system and once radiated, no hearing in left ear at all... So I have decided to go under the knife and am scheduled for surgery 2/14/07. Will keep you posted- thanks-Annie

[Mark]

Hi Annie,

Congratulations on your choice of Dr. Jackler at Stanford for surgery on your AN. I know from your previous posts that you certainly did an excellent effort of researching various options. I am very familiar with Dr. Jackler as I consulted with him when he was at UCSF when I was trying to make my decision and would consider him world class. So if you are comfortable with the surgical choice , then you are in great hands with him. However, I also know he is a pure surgeon and anti radiosurgery because it's not what he does. So, if you directed your inquiries about CK to him as opposed to Chang (who actually does both cut and zap AN's) , Adler, Shuer , etc who work with both options I would be concerned that you got a correct view of that option.

So for others who may read this post I think it is important to clarify the statement "Stanford "the home of the cyber knife" felt it was not in my best interest to have cyber knife. Factually, Stanford uses radiosurgery for over half the AN's it sees and a higher percentage of those under 3 cm. Any Medical center is a collection of docs who all have different specialties and opinions. Jackler is head of the Neurotology section who specializes in AN surgery just like the docs at HEI and it sounds like you got his opinion which is precisely what I got over 5 years ago when I was 44 as well. Knowledge of a treatment option is physcian specific and experts in both can be found in any world class medical center, but their individual opinion does not suggest that it reflects the consensus of many unless it goes to a forum such as a tumor board.

That being said, I am certainly very supportive of your choice and would again say that I would have Jackler on the top of my list if I was having surgery as well. Best wishes to you for a great outcome

Mark

[ppearl214]

Hi Annie and welcome!

Wow! LOVE your positive energy!  Like you, I just "rock and rolled", took the bull by the horns, researched and reached out to others for inputs/suggestions and was ready to go on.

You are in FAB hands at Stanford, as you already know... and by having your surgery on Valentine's Day (btw, I'll be an old lady that day), know that your surgical day will be filled with the love and support of all of us here!

Welcome aboard and please keep us updated!
Phyl

[pearchica]

Thanks Mark and Brucifer for the input- I do agree with you surgeons are biased towards surgery!  I do think it's a great idea to give Chang a call- I guess my only questions with those who have had cyberknife done, do you still have hearing? (I'm assuming you do..). You will both get a kick out of this- Jackler gave me a huge handout on his chapter in a textbook about - you guessed it surgically removing a AN...and I don't doubt at all the business motivation involved in all this. House Institute was politely quiet when I told them I was going with Stanford- reminded me of the ad "lost another loan to ditech".  What have been your basic motivations for avoiding surgery (Brucifer you are at no risk I am assuming at this early stage in the game and Mark- is it whole sheer invasive procedure of the deal?). Thanks both in advance- Annie

[ppearl214]

Annie,

I had CK done here in Boston last April (almost 10 mos ago).  My hearing is almost what it was at time of treatment (just a hint below)... at time of treatment, my hearing in my left (AN) ear was just at the bottom of the "normal" range, with issues for low tones and voice recognition at 100%.   My last one (this past October) showed my left ear just below the "normal" range, still issues with low tones, voice recognition at 96%.  My next hearing test is in 2 weeks...

For me (and this is only my attitude, so I only speak for myself), my preference was " go non-invasive first, then, if need be, go invasive"... but, that does not apply to everyone.  My family wanted me to have it cut out since I lost a sister to a brain tumor (malignant childhood growth). 

Annie, overall, my hearing is fine, I use my AN ear as my "phone" ear and except for a hint of loss (last test showed that from previous test, I lost approx 10-15 db), overall... I hear fine and... got word in December that the AN is dying it's slow death (beginning stages of necrosis)!  But don't tell my spouse... He thinks it's selective hearing! I use my AN as my excuse.. shhhhhhhh...

Phyl