Has anybody been to John Hopkins?

[Tisha]

Hi, I'm a newbie and posted on the AN issues board this week.  Everybody who answered me was wonderful, reassuring and quite helpful.  I spoke with my Neurotologist yesterday and asked the size of my tumor.  He said it's irregular-shaped, sort of like a ice cream cone.   The length is 1.7cm, just the round part is 1.0 cm.  It is not touching any part of the brainstem yet.  He wants to watch and wait because I still have hearing in that ear (although distorted), and I have undiagnosed hearing loss in my "hearing aid ear". 

I would like a second opinion.  My DH found some statistics yesterday, I don' know how to link.  However, the website is www.dinagoldin.com/anarchive/spread.htm

From looking at these statistics for radiosurgery, John Hopkins looks like a leader, 2nd is Staten Island Univ. Hospital.  Of course I don't know who put these together, or if they are accurate.

I guess I was wondering  if anyone has been to John Hopkins.  I'm very concerned about my facial nerve being saved.  Thanks.  Tisha

[Kaybo]

Tisha~
I don't know about JH & AN surgeries but we went there in March for my T3 reconstructive surgery and were VERY impressed!  We had an INCREDIBLE surgeon - he is a plastics guy but I could call him and see what he says about AN people.  He is just that type of a guy (plus I need to call anyway b/c his wifey was having their 1st child this month).  Let me know if you want me to inquire for you...

K

[Kate B]

John Hopkins has its own listserv that you can join and talk to people who had treatment there. Over the years many people have used John Hopkins for FSR. 

Kindest Regards,
Kate

[Tisha]

Kaybo,  Thanks so much.  I would appreciate any information you get from you surgeon.  I will type back more later.

Tisha

[sgerrard]

I will put in a brief plug for Cyberknife. The stats in that link are somewhat dated; the results lately for CK have been very good.

Here is link to the Cyberknife patient forum, which a good place to get information online from two very experienced radiation oncologists, as well as other CK patients: http://www.cyberknife.com/Forum.aspx

Also welcome to the forum, Tisha.

Steve

[leapyrtwins]

Steve's right, Tisha.

In addition to checking into surgical options, you should check into the possibilty of radiation.  Lots of AN patients have found it to be an excellent treatment option and your AN is a size that qualifies.

If you get some time, you should also contact the ANA and request some of their informational brochures.  The brochures explain lots of things about ANs in general, the treatment options, possible side-effects, etc.  They are a great resource.

Jan

[Betsy]

Hi Tisha,

I didn't go to Johns Hopkins, but if you're near Baltimore I can recommend Dr Howard Eisenberg at the University of Maryland School of Medicine.  He's my second opinion doctor.  He does AN surgery AND radiation, so his advice is based on your needs, not on what makes the hospital the most money.  At least that's how it seems to me.  In fact, if I still lived there, he would have treated my AN.  Not that the doctors who did treat my AN weren't great, but Dr Eisenberg has this way of explaining things that really put me at ease.  He described my AN as an ice cream cone too!  His number is 410-328-3514.

Best wishes to you,

Betsy

[Dealy]

Tisha-My name is Ron. I went to Johns Hopkins alittle over 2 years ago for 25 sessions of FSR. My tumor was around 2.5CM. So far it is stable and holding. If you look at my profile I am an NF2. This is my 2nd time around. First AN was in 1988. Hand surgery in KC. I chose JHH because I knew of another NF2 that went their and received FSR. That last I heard-her tumor is dead-dead and shrinking- but is taking her hearing after 5 years. If you would like more input from me-give me a personal e-mail. I will answer all your questions the relate to my experience. Thanks-Ron

[Tisha]

Hearing that your friends tumor is dying and shrinking, but that her hearing is going after 5 years is like a stab in my heart.  If only this damn tumor were on my already bad ear, not my good ear.

Of course, I've been imaging the worse today and went to check out cochlear implants if something would happen.  Well, they say with cochlear implants you can't have alot of MRI's.  Soooooo......if I have radiation, they will need to keep doing MRI's all my life.  Things just seem to be getting more complicated.  Sigh.  I need to talk to some other doctors about worst case scenarios and what could be done.

Thanks for letting me know you've been to JHH

[Dealy]

Tisha- Sorry to give you the bad news. Iknow she did get a Cochlear Inplantin the other ear. The one thing that concerns me is this- In order to get a Cochlear Implant you need a intact Hearing Nerve. Also- you are right-you cannot have MRI's with a CI. However you still cna have Cat Scans-just won't be as accurate. I had surgery on my first tumor on my left ear-1.5CM. They took my hearing nerve back then-no options left for me on that ear. The new AN-even after Radiation-it took around 20 to 30% of my remaining hearing. I can still hear but not without the use of a Hearing Aid and that is even limited> I can relate to your situation. In some cases surgery has been known to save a degree if not all the hearing-but there is no way to know until the see how the tumor has compromised the hearing nerve. I know one day I will go completely deaf. However with surgery and size of tumor that would have been immediate. At least I can go deaf on my own terms. This is not an easy decision to make. I decided to go with FSR because I felt it gave me ther best options at the time. I can not look back and regret my choices now. Please take care-and do not despair. Someone told me once it could be worse-and in retrospect that is true. Thanks-Ron.

[Cheryl R]

Tisha and Ron.      One can have a type of cochlear implant where the magnet is left outside somehow in the appartus.  You shave a very small area where it goes on the head and then it comes so sticks to the head.You do have to shave every few days.   I wasn't given all the complete details but just a general description and now can't remember it exactly since didn't need to have one.       Anyway that way you can still have MRIs and that was what was going to be done with the CI that I then did not have to get since my surgery did work.
                                                   Cheryl R

[Tisha]

Thank Ron and Cheryl,

I know there are no guarantees with this.  I do find it more reassuring that you can have cat scans at least.  I really think I will be doing either CK or another type of hypo-FSR, my research is not yet complete.  I truly think if I watch and wait, my hearing will go completely.  Two well-known CK docs have told me this.  So, even with the statistics of only 80% hearing preservation, I think those are the chances I will have to take.  I just want to know my options in case it came to be totally deaf.  This is all very frightening, but I do try to put it into perspective when I begin feeling too sorry for myself, or too low. 

Thanks

Tisha    P.S.  That did make me feel better that you can get Cat Scans with the CI!

[Dealy]

Cheryl R. and Tisha- Thanks for the info on CI's. Too me the day when I reach total deafness this could be a viable option. I also know that the medical field is making tremoundous improvements in hearing. So I feel all is not lost. I do miss hearing normal-like music etc. but I can still function and work too this point so I will limit my complaints. It is tough to cope with deafness-especially when you get people who do not understand what it is like. Alot of days I just grin and bear it. It does no good to get mad an angry anymore (not that I ever did). I know Tisha you will come up with a viable solution that will work for you. Take Care-Ron

[jb]

Hi Tisha,
Just wanted to mention that in this summer's ANA newsletter, "Notes", there was an article by Dr. David Andrews from Thomas Jefferson Univ. (in Philadelphia, I think?)  on FSR and hearing preservation.  They are looking at trying to further lower FSR total dose to improve hearing preservation.  The stats quoted with their current protocol (46.8 Gy total dose) were 100% tumor control and 80% hearing preservation.  The article said they will be doing a phase II study with 43.2 Gy, to see if they can further improve hearing preservation.  Not sure if you're considering the "full" fraction FSR, but just thought I'd throw it out there.  I have no experience with TJ Univ., but seems like several on the forum have been treated there.

Good luck,
JB