Just Diagnosed

[Anthony 42]

I was just diagnosed with a AN right side, 7 x 5 x 5 mm. I am 35 yrs old and from Northeast PA. I have slight hearing loss in that ear and slight ringing. Every so often it would block up and the ringing gets worse and my hearing would  drop significantly in that ear when this would happen. My doctor would put me on a cycle of Prednisone and my hearing would get back to normal in a few days. I had an MRI done a few weeks ago the an AN was found.

My ENT doctor up here sent me to the University of Penn. My appointment was yesterday and I met with Dr. Bigleow. I left there with my head spinning and very nervous. He gave me three options, watch and wait, radiation, or surgery. I still have many questions. I met with my doctor up here again today and he suggests radiation (Gama Knife). He said the location of my AN makes me a perfect candidate for surgery or radiation treatment. He informed me that he sent many of his patients to U of Penn for radiation and all have been successful. I do not want to go through surgery and am leaning toward the Gamma Knife treatment.

I guess I am just looking for some info from anyone who has gone through the Gamma Knife radiation. Hearing Loss after, facial problems, tumor growth,  headaches, etc....I noticed a few posts on this board from members that have went to the U of Penn and saw DR. Bigelow. Any info would be greatly appreciated. 

Thanks
Anthony

[Jim Scott]

Hi, Anthony ~

I'm certainly sorry that you've been diagnosed with an acoustic neuroma but pleased that you found the ANA website and decided to register and post on our discussion forums. 

I'm not from your area and I didn't opt for GammaKnife treatment so I can't offer any answers to your pertinent questions - but I'm confident other posters will, soon. 

I removed your duplicate post from the 'Inquiries' forum as we prefer to avoid duplicate postings whenever possible.  These are very active boards and I know you'll receive useful responses.

Jim

[Anthony 42]

OK... Thanks Jim

[sunfish]

Sorry you wound up here, but welcome!  You are fortunate, in that you live in an area where good treatment is available.  I don't know the specifics, but some of the best doctors in the country do radiosurgery in Pittsburgh.  I'm sure some of those folks will read your post soon, and will chime in.  ANs are slow growing, so take some time to get really, really well informed before making a decision.  On this site you will find research reports and summaries which can give you the most up-to-date information.  I found the patient survey to also be interesting and helpful in making my treatment decision.  If you haven't already ordered the information packet, it's well worth while.  Keep us posted regarding your progress!

[CHD63]

Anthony .....

Welcome to this forum ..... so glad you found us.

I did not have radiation because my situation did not really allow for it ...... I had a rare rapidly growing type, plus a large radiation exposure as a child.

Pittsburgh has an excellent reputation for radiosurgery.  Wake Forest Medical Center (in NC) has an outstanding reputation with their gammaknife treatments, as well.  A local friend had her AN treated at Wake Forest last year and has done extremely well ..... retaining her hearing and no facial issues.

Many thoughts and let us know what else you find out and what you decide to do.

Clarice

[TJ]

Hello Anthony

I did not have GammaKnife radiation, but I did have CyberKnife radiation which may be another option for you.  I think GK is given in one large dose while CK is given usually 3-5 times in smaller dose to protect the area around the tumor.  You might want to see that that is an option for you.

Best of Luck

TJ

[richcooks]

Hi Anthony,
  Well be assured that you have plenty of company.  I have known about my AN for 6 years.  I was a watch and wait but it kept growing so I had to do something about it.  My ENT sent me to a local guy and I still wanted another opinion.  So he set up an appointment for me with Dr. Bigalow too.  Keep in mind that Dr. Bigalow only has the Gamma knife.  I specifically asked him "why would you choose to use the Gamma Knife in lieu of a Fractionated Sterotactic Radiation (FSR)Therapy procedure"?  He said, " That is what I have here. "   I think, you need to at least get another opinion seeing how Dr. Bigalow gave you three options. 

  Just to let you know, I chose to have FSR here at the New Jersey Shore at the end of December. It took me 5 months to decide on a treatment method, but I knew early on that I wanted FSR in lieu of the Gamma Knife.  I had only some minor light headedness after each of my 5 treatments.  It was a little uncomfortable staying still while being anchored to the table for 45 minutes for each treatment, but not unbearable.  However, if you are claustrophobic, you will need to take some medication to relax.  I did not need anything. My wife drove me but I could have driven if I needed to.

  Now the issue,  there are various FSR machines and you have to pick one and the Radiation Oncologist that you feel comfortable with.  To me I knew I wanted FSR vs the Gamma Knife because I still have very good hearing in my affected ear and wanted the best chance to keep it.  So far so good.  I discussed the machine accuracy with my Radiation Oncologist and then made my decision.   

  I hope this helps.  Feel free to email me if you wish to take this off line.

Rich

[Tumbleweed]

Hi, Anthony:

Welcome to the forum. Radiosurgery is, IMO, an excellent choice for treating ANs. Your AN is small, so you have time to research your options and make a decision on your choice of treatment -- there is no urgency that demands your being treated immediately. That said, the sooner you receive treatment, the more hearing you will retain.

Following up on what richcooks said, CyberKnife (CK) is thought to offer slightly better chance -- around 10% better -- of preserving hearing compared to GammaKnife (GK). I chose CK over GK in part for this reason. But I think the depth of experience of the doctor and medical facility with treating ANs should be a more primary concern. If I understand correctly, you live in Pennsylvania. UPMC (University of Pittsburgh Medical Center) has the most experience in the U.S. with treating ANs with GK. If I lived in PA, I would seriously consider going there for my treatment.

You may find the information at this forum link helpful:
http://anausa.org/smf/index.php?topic=6670.0
Look for my post roughly half-way down the page that loads. It describes in both technical and practical terms the differences among the various treatment choices.

Best wishes,
TW

[rupert]

Hello Anthony,

   Are you from Northeastern PA  or the town of Northeast PA?   I only ask because the I am just down the road from the town of Northeast.

  I had my GK treatment done at University of Pennsylvania Medical Center (UPMC)   last year, by Dr. Kondziolka.  This is a fine facility,  and would highly
recommend it if your considering GK.   I would be happy to answer any questions about GK and the facilities at Pittsburg if your considering.   I am
not familiar with the U of Penn and Dr. bigelow,  but it looks like some other posters have experience with them.   Good luck to you.

                                                                                                                                                             Bryan

[Tumbleweed]

One other thing, Anthony. I believe UPMC will review your MRIs and any other related test results (e.g., audiogram) and give you their recommendation in a free consultation. At least that's what they offered  three years ago when I was seeking additional opinions about my treatment options. I think it would be helpful for you to contact them and ask if they would still review your case for free. Even if you decided to go somewhere else for treatment, having a leading expert in the treatment of ANs review your case and give their opinion would be of immense benefit to you.

Best wishes,
TW

[wcrimi]

Anthony,

I'm sorry to hear about your diagnosis, but I guess you can see by now that you are in very good hands on this forum. 

Wayne

[kkgriffin]

Anthony I am sure your head is spinning right now.  I was diagnosed with an AN just about the same size as yours in October.  I also was given the option of surgery or radiation, which we have the cyberknife where I am.  We did not have a gamma knife.  I chose cyberknife and had my 3 treatments in November.  I have had some major side effects from the radiation, actually mine were worse than expected.  But I am still glad that I had radiation instead of surgery.  I wish you luck in your decision, but do lots of research before you decide which was to go.  Do not decide on one vs another just because that is what is there. 

Karen

[Shorebird]

Hi Anthony,

I'm sure your head is spinning, but I'm glad that you found this forum.  It was instrumental in my AN journey.  You'll find great information, honest feedback and friendly folks.  We're here to help.

I was diagnosed with a 2.5cm AN (considerably larger than yours) last summer.  I met with Neurosurgeon Dr. Georg Noren in Providence and he said that he was very optimistic that GK would work for me, but encouraged me to look into other options if I felt I needed to.  Regrowth was rare in his 30+ years of experience.  From there, I did meet with a surgeon in Boston for a second opinion.  Of course he said he could absolutely do surgery.  When I asked him outright, "Do you think I'd be making a mistake by going with the radiation route given the size of my tumor and my age (I'm 40)?"...he said, "Absolutely not.  If by slim chance, the radiation doesn't stop the tumor growth, you always have surgery as an option".  That eased my mind a great deal.

Some people can't stand the idea of knowing there is a tumor in their heads and just want it out.  I am not that person.  My main concern was to get it to stop growing.  I didn't have many symptoms going into this and I felt that the side effects from surgery were just too risky for me to face, so I underwent GK in Providence on 2 months ago.  Of course I was scared going in...the fear of the unknown and all, but I can tell you that it went very smoothly (thanks to the skill of Dr. Noren and a little Ativan!).  All total, I believe I had about 2.5 hours of radiation over the course of one very long day.  I have had no additional hearing loss, no facial nerve problems, no hearing nerve problems, & no balance nerve problems.  I did have headaches for about 2 weeks post GK, but nothing that Excedrin Migraine didn't clear up.  I had the radiation treatment on a Friday and was back to work on Tuesday.

Soooo...while I'm only 2 months post GK, I couldn't be happier.  My first MRI won't be until May, at which point I'll find out if "Tootsie" has stopped growing.  That will be a big day!  

My advice to you is to take a deep breath, take your time, do your research, and find a team of  doctors that you trust whole heartedly (I "fired" the Rad Onc they assigned to me after reading some patient reviews on him and the Neurosurgeon assigned me a new one with no pushback).  You'll know what is the right decision for you.  In the meantime, we're here to answer any questions you might have.  Good luck in your journey.

Sincerely,
Cindy

[GRACE1]

Anthony,

My GK experience was similar to Cindy's.  I had no problems at all.  One difference was that I had a hearing loss of 40% before GK, and 2 years afterward it was at 80%, with the other 20% being distorted.  In the future I will probably pursue something to help my hearing in the right ear.  I went Christmas shopping and out to eat the night of my GK procedure.  I went back home to Georgia the next day.  I was back at work 3 days later.  I picked GK because it was a 1-time procedure. 

Grace

[JimmyD]

I would not wait too long.If you are already experiencing hearing loss the AN is pressing on the nerve.If you go with GK or one treatment it could cause it to swell too fast and you would kill the nerve.In 99' I had five FSR treatments at JHH in MD.It was too much too fast and the tumor swelled and I lost my hearing(Right side).When I had my left side treated I went with 30 treatments.That was over two years ago and so far so good.Good luck