2 to 3 years post GK treatment

[nearpoint]

I have a small 1.4 cm x 0.7cm acoustic neuroma in my left year. I still have good hearing. Recent MRI indicates that my tumor is growing about 2mm in 6 months. I am trying to make a decision whether to go for surgery or GK. I would really like to preserve my hearing if possible. I would love to hear from anyone who has had a small tumor treated by GK 2 to 3 years ago. I would like to know your experiences and if you have had hearing, were you able to preserve it. I have read that GK can in the long term cause facial paralysis in some cases, some have bouts of dizziness lasting several years, and in some cases these tumors tend to grow back. Is this true. If you have had GK surgery 2 to 3 years ago would love to hear your experiences.

[PaulW]

I had Single Fraction Cyberknife which in many ways is similar to GK
My tumour was 10mm x 5mm x 5 mm
Just prior to treatment I had diminished hearing, my balance was compromised, I had mild tinnitus and the plugged ear feeling
I had also been to hospital a year earlier with mild facial paralysis on my AN side of my face which lasted a few hours.
It felt like my head was in a cloud and it was annoying living in it.
I was also having concentration problems and memory problems and found typing and speech a little awkward, often forgetting words,
This was all before CK

I have just made it past 3 years.
I am very happy with radiation and glad that I avoided surgery.

I guess we often read about the Side Effects of Radiation.
Personally I feel what people call the side effects of radiation is really the effects of an Acoustic Neuroma.
After radiation the effects of an AN can and mostly do get worse.

After CK everything got worse.. slowly but surely things got better. At 5 months post CK, I had the first day of NOT living in a cloud a feeling that had been with me before CK, my hearing had improved and balance was markedly improved.
I actually felt normal... The healing process is slow, with most of the improvement happening within the first 18 months.
Expect 2 years of "things" happening

I think when we read about these symptoms we probably think they are worse than what they actually are..
These symptoms for me were annoying, but not debilitating, I could still do everything.

I went back to work about 2 hours after CK.
I tried to sit still in my hotel room and rest, got bored, got back on the computer and started typing emails.

Thinking back on my experience there was almost nothing I could not do or did not try post CK.
But I did need to put my mind to it.

Currently my hearing is better than it was before treatment and remains within the "normal" range, although it is at the lower end of normal. Most of the time now I completely forget that I have a tumour. Life has returned to how it was before the tumour.

I still get the occasional reminder of my AN,  Especially at the start of a cold, very mild tinnitus, and an off balance feeling.
But that is really it.

There is a really good Webinar in the Members Section of the ANA website.
It goes for about an hour and was given by Dr Douglas Kondziolka one of the leading experts in Gamma Knife and Acoustic Neuromas.

I urge anybody who is considering GK or surgery to become an ANA member and get access to this brilliant presentation.

[nearpoint]

Thanks for sharing your experience. I am still in the midst of deciding between surgery or GK. Doctors at U of M have told me that radiation is not an option, they recommend surgery. I am meeting with two neurosurgeons end of September and then I hopefully will make up my mind. Talked with another member of ANA who had surgery at U of M and her experience and outcome was very good. My only struggle with radiation is the unknown and time it takes before you start feeling better. Thanks again for your post

[rupert]

   I'll share with you my opinion and observations about hearing preservation that I've seen over the years on this forum.  Unfortunately, there is no procedure that will guarantee to preserve hearing. If you do nothing, have GK, CK or surgery you could lose your hearing. Sometimes it's before or after treatment and of course the time frame varies,  but most people with AN's will lose their hearing over time. That is the reality of these things. Remember,  that these AN's are growing off the balance nerve which is almost as one with the acoustic nerve. They either squish the nerve or take away the blood supply causing nerve damage and unfortunately these nerves cannot be regenerated or repaired.  Have you had hearing tests?  I only ask because I thought I had good hearing going in to my consultations. However, after several hearing tests,  proved what I thought was good hearing was actually not. Every procedure has a goal. As the techniques are perfected and doctors are getting better and better at treating AN's the evolution has gone from just getting the tumor out, to preserving the facial nerve and now to preserving hearing for as long as possible.  Get several opinions and talk with your doctors .  Good luck to you.

[ASG]

Nearpoint,

At the beginning of my journey I also had one of my first consultation at U of M, and one Dr. (El Kashlan) told me radiation was not an option while another (Dr. Thompson) said it was an option but not his recommended approach.  Meanwhile, other doctors I sent my slides to, like Dr. Chang at Stanford and Dr. Lunsford at Pittsburgh, recommended radiation.  All this is to say that doctors often (always) recommend the treatment strategy that aligns with their primary training and specialty.  U of M is an amazing place, but the buck doesn't stop there as far as comprehensive treatment information.  Be sure to get opinions from everyone on the spectrum (House, UPMC, etc).  At the end of the day MCF might be the best thing for you, but you can place that decision in a more informed context.  I was really impressed with Thompson and my understanding is that UM has the highest published success rates for Middle Fossa in the country.  I consulted with both U of M and MEI and would have picked U of M for surgery (in case you care about anonymous internet opinions).

[nftwoed]

Hello;

   Please exuse me. I'm sorry; Do you mean U of Missouri, Michigan, Missouri, Montana, Minnesota, etc.? My memory is failing me a bit.
Thank you. Also, is the list of published results on their web site?

[nftwoed]

This? http://www.uofmmedicalcenter.org/  Thank you.

[ASG]

U of M = University of Michigan.

Results were published in journal Otology and Neurotology.  Here is a link to the article: http://journals.lww.com/otology-neurotology/Abstract/2006/02000/Hearing_Preservation_and_Facial_Nerve_Outcomes_in.16.aspx

[mesafinn]

I am more than a little skeptical when "Doctors at U of M have told me that radiation is not an option, they recommend surgery."  I understand the "recommendation," but I fail to understand the "not an option."  This tells me that it is their interests they have in mind, heart, and pocket--rather than you, the patient who is the only individual who has to live with the reality of your decision.

Keep discerning and listen with an open heart and mind.  Eventually, you will know what to do.

House told me radiation was a bad idea, and so I ruled out House.  Not because they were against radiation but because they advised surgery as the "only" option for me.  I respect them--but I wanted the whole spectrum of options and possibilities, not a perceived god's limited way of thinking and believing.

I think your question--seeking someone two to three years post-GK--is a good one.

Hang in there and all the best.

[KeepSmiling]

The  notion that hearing can only be preserved with surgery and not with radiation- this seems suspect. It ought to be researched fully. It seems contrary to what we have read and heard. If I were you I would research whether the surgeons always cut the nerve during this type of surgery and whether the hearing is ever preserved. Researching this fully would be a worthwhile endeavor. Best to you!