Trying to make the right decision...

[exershelly]

I'm newly diagnosed with a medium sized AN. I had my first MRI on May 23, 2018.  I live outside of Hershey PA and am about two hours away from Philadelphia and four hours from Pittsburgh.  So far, I have met with a neuro-surgeon at Thomas Jefferson in Philadelphia and a neuro-surgeon and radiation oncologist at Penn State Hershey Medical Center. Thomas Jefferson suggested fractionated radio surgery 5 days per week for about 5 weeks.  Hershey recommended gamma-knife (using same GK machine as UPMC Pittsburgh) for either 1 fraction or possibly 5 fractions.  From what I have read, the SRT multiple fractions over 5 weeks could possibly save some hearing on my right side (currently have 60 percent available on my right side). I have no other symptoms besides a little tinnitus and of course hearing loss).  Balance is good, no dizziness or vertigo.  GK however is more direct hitting the tumor precisely with less chance of radiating surrounding healthy tissue. I'm very torn about which treatment to chose and also which facility.  Staying close to home has many advantages, however so does traveling to a larger city and facility.  Ultimately, I do understand it's my decision and I have to go with my gut.  If this were another body part this would be an easier decision (like I wish it was in my toe or something) but when it's your brain, ugh, there are a lot of factors in making the best decision.  I'm very faithful and have been doing a lot of praying about it.  Anyone have any advice that have had either treatments? 

[rupert]

I had GK at UPMC.  A highly recommended facility.     It was a 3 1/2 hour ride for me.  You meet with the doc the day before and have the procedure the next day,  usually done by noon so I would not hesitate to travel a few hours for treatment.  People have different opinion on fractionated vs one shot treatments.   All I have are my own experiences and the one time GK worked out great for me.  I also had a medium size tumor and was treated 8 years ago.  My hearing was pretty much gone at the time.  I would highly recommend an opinion from UPMC.  They're number one in my book and many others too.  Good luck to you.

[exershelly]

Thank you so much for your response!  I did contact Dr.Lunsford's office at UPMC in Pittsburgh and am sending my info to him for review and consult.

[notaclone13]

With ANs, you want the most experienced team available. People come from all over the country to get treated by Dr. Lundsford. He is an excellent choice and you are lucky he is located in your state. Well worth a 4.5 hour drive to be treated by one of the best in the country. I also read that UPMC has the new GammaKnife Icon. This machine uses a mask rather than a head frame and they can give lower doses of radiation over consecutive days, as they do with Cyberknife.

[exershelly]

I made the decision to see Dr. Lunsford at UPMC Presbyterian 3 weeks ago.  It was a great experience and I'm so glad the difficult part of trying to make the right decision is behind me.  My gamma knife radiosurgery was exactly three weeks ago yesterday (8/14/18).  I met with Dr. Lunsford on Monday the 13th and we reviewed my MRI and audiogram.  We discussed what was going to happen Tuesday morning and I met with a the radiation oncologist, the nurse that would be with me through GK (who was outstanding and made all the difference in the world) and then I had another audiogram.  Tuesday morning, I showed up at 5:30 AM, prepped for the procedure and was done and discharged by 10:30 AM!  I went to Whole Foods after and grabbed lunch and went for a walk in the park that evening.  I was a little tired and "foggy" the rest of the week but I was back at work on Thursday. I rested up over the weekend and felt back to normal the following week.  My hearing in my right ear doesn't seem any different so far and the tinnitus seems the same as before GK as well.  I want to thank those that responded to my post and also to my friend Michelle who reached out to me to share her GK story as well.  Peer support is so important and making the right decision for yourself is key!  I hope my story may help others who are on the fence in making the right decision.  I had 5 consults before I decided to visit Dr. Lunsford.  I'm so glad I was able to have him perform this procedure as he is the pioneer of GK and happens to be in my state.  I'm so grateful!!!

[notaclone13]

Hi Exershelly,
Thanks for the update. It sounds like everything went very well and I hope you have the best possible outcome.  Did you have the head frame or did they use the new Icon that only requires the mask? Please continue to post your progress as it is always good to hear the experiences of members following treatment.
M.A.

[exershelly]

I’m 6 months post gamma-knife and had my follow up MRI which showed some changes.  I also followed up with my ENT and had a hearing test which showed my hearing to be a little worse on my right AN side.  The audiologist had me try an Oticon hearing aid on the right side and it definitely improved my ability to hear better.   Wanted to get some input as to those that have tried hearing devices and what has seemed to work.  I have about 60 percent loss on the right side.  I can hear noises but can’t hear conversations on that side.  Any suggestions are appreciated.  Thanks!

[gary.s]

Hi exershelly,

I had Cyber Knife 10 months ago and do not have much functional hearing remaining on my AN side. My audiologist set me up with the Phonak Audeo B hearing aid and the Phonak Cros B for my right AN side. The Cros B is essentially a microphone that wirelessly transfers sound to the Audeo B hearing aid. My word recognition is only about 20% presently, and if using a hearing aid in the AN side, it would just amplify the jibberish. The Cros has been wonderful, I can hear someone talking on my right side for the first time in several years. It has made conversations so much better, and easier for me to be involved. There are several devices out there, this is the one that works for me. Best of luck.

Gary

[bfoley]

Exershelly - Can you give me an update on how things are going for you?  I had GK at Mayo in July 2019 and am wondering what could be in store.  I know everyone's journey is different, but I do like hearing from folks who have been there before.

Thank you in advance!