Is Gamma knife too good to be true?

[Sefra22]

I thought I had made my decision to have surgery, but the more research I do on Gamma knife, the better it sounds. From what I've read, there is no nerve damage, only one night hospital stay, and back to your life much sooner. But I wonder, what are the downsides? I can't seem to find any info on the risks, other than that the tumor is still there and may swell for a time. I would appreciate any info.

[IAHeel]

Lisa,

My wife had successful translab surgery at the House Ear Clinic in LA yesterday. She had a 1.9 cm AN, with significantly reduced hearing going in. We took a lot of time researching the options. Drs. Friedman and Schwartz both recommended surgery, but discussed the trade-offs with us in great detail. They know the research and are world-class surgeons. Radiosurgery and microsurgery are both reasonable alternatives, but there is a lot to consider.  For what it's worth, House is amazing and was well worth us traveling from Iowa to LA.

Good luck to you!

Fred Moore

[ppearl214]

Hi Sefra

do you have access to the ANA Newsletters (are you an ANA member)?

We just received this month's issue of the newsletter (not yet posted on the ANA home webpage/link for newletters). There is a terrific main story write up about the different radio-treatment options, some pros and cons to all.... and as many have us have learned, no treatment is full proof.  Risks involved, regardless of which radio-treatment can include dizziness, balance issues, further loss of hearing (usually within 5-7% of hearing at time of treatment), etc.

If you don't have access to the newsletter, you can email the site/director here or let us know here and will see about getting you the copy of the article.  It was very insightful in its discussion of all forms of radio.

Phyl

[Derek]

Hi there Phyl...

I would also greatly appreciate any advice re obtaining access to the relevant article on GK treatment if you could kindly direct me to what I have to do etc.

Regards

Derek

[ppearl214]

Hi Derek,

Well, I can scan the article and try to post somewhere..... let me see what I can do. It was a terrific article.  Will advise.

Phyl

[okiesandy]

Greetings all,

Looks like others are like I was. I was scheduled for surgery at HEI with Dr. Brackmann. Due to insurance dragging feet and then only paying as out of network I had surgery postponed. In the mean time I contacted Dr. Clinton Medbery with Saint Anthony's Hosp. In Oklahoma City. He has 27 years experience as a radiation oncologist. He does Cyberknife and Gamma Knife. I thought I had nothing to lose by consulting him. My local neurotologist and the surgeons at HEI had suggested the only way to go was surgery and gave me a lot of out of date information when I said I wanted to look into radiation.

My surgery was scheduled for 11/9/05 I saw Dr. Medbery on 11/8/05. My MRI's were presented to a board and came back with the opinion that I could have any procedure I wanted. I then went to a Neurosurgeon at Oklahoma University Medical Center that does surgery, GK and CK. She too told me I could have any option I wanted. I ask her if it were her or a loved one and the tumor was exactly like mine what would she do. She said radiation in a heart beat. I ask what if radiation failed. She replied why would I think it would fail? The out come is very close between radiation and surgery and radiation left little room for facial damage or dry eye. Surgery would be harder after surgery if that failed. I didn't have hearing so that was not a factor. I ask why the surgeons were opposed to radiation. She said because they know and do surgery and don't do radiation. In her opinion GK and CK will become more and more common. I thought I was going to have to pick my neurotologist off the ceiling when I told him I was going to have CK.

Long story short. CK first week in January 2006 I will go for 1 year MRI tomorrow. I had 6 month and 3 month all was well. I have had very minor symptoms since treatment. Have not missed a day of work except the days I had CK and could have gone then if I wanted. The husband of a lady I work with was diagnosed with a AN and scheduled surgery then changed to CK here in OKC. His treatment was December 2006. They are on a cruise at this moment. He did go to work after each CK treatment. He was within two weeks of surgery when he canceled.

Your best bet is to find a neurosurgeon that does all kinds of AN treatment and see what is best for you. In the mean time you can go on the Cyberknife Patient Support site and ask Dr. Medbery or any of the responding doctors any question you would like and you will get a very honest answer as to treatment options. I was never, not one time pushed by Dr. Medbery to have radiation. I was however scared spitless by the neurotologist and their dire predictions about radiation. I do not have one regret that this is the way I went. I feel good, tinnitus is less, balance is getting better and fatigue is just about all gone. I sleep like a baby and am back to doing just about anything I did before diagnosis. Research, go with the gut feeling and go on with your life.

Sandy

[Derek]

Hi Sandy...

Many thanks for your comprehensive overview re the radiation treatment option that you decided upon and which has been an undoubted success for you.

Being presently subject to the 'wait and watch' option I fully intend opting for GK treatment (CK is not available within the UK) when and if decision time arrives pending the result of my forthcoming MRI scan in April.


Your account graphically illustrates the importance of thoroughly carrying out your own maximum research and obtaining more than one professional opinion on all available treatment options before making that all important final decision and not to be 'pushed' unnecessarily into microsurgery particularly if the AN is of a size and in a location whereby the less invasive and obvious less risky stereotactic radiosurgery is a viable option in the first instance.

Best Regards

Derek

[Sheryl]

Had to jump in and add my two cents!!  I, too, am a wait and watcher and have decided when it is "time" that it will be either GK or Cyberknife.  I've actually been at this for five years with my 9th cranial nerve schwannoma starting at around 9 mm and is now 12 mm after that amount of time.  In fact, this past MRI done in November (yearly) showed no growth over two years and quite possibly a tad smaller - I grasped at that news  ;D  So now I am on a two-year MRI followup but may ask to continue on the yearly basis. 

Ironically it is my husband now who is considering Cyberknife and awaiting an appointment in the Naples, Florida facility.  He had another type of benign tumor (meningioma) removed in May, 2004 and at his MRI followup in November (we do things together!!), it showed a regrowth.  Usually these are extremely slow growing but the first doubled in size in six months and they feel that this will follow as it probably has the same cells.  The opinion is to have another surgery and then radiation but he is opposed to having his head cut open again and I don't blame him. 

Bruce - as you are another "wait and watcher", I have been following your posts and enjoy reading them - glad all is going well.
Sheryl

[Sefra22]

Thanks everyone for your responses! Today I made an appointment for a consultation with Dr. Noren in Providence for Feb 1st. to discuss if GK is right for me. I am hopeful for the first time since my diagnosis. The more I researched GK, the better it sounds compared to surgery. I really didn't want to use up all my vacation time in recovery! Now I can still have some time off in the summer, which is great because I got a new kayak for Christmas! 

[tony]

Noren is just about the best (ie most experianced etc etc)
I think you are in good hands
Best regards
Tony

[michael]

After reading all the responses that you got I hardly need to say anything except: I am 20 months post GK and could not be more pleased. I was in the hospital from 7:00 AM till 1:30 PM, went home, went to meetings that night and flew to Colorado for meeting the next 5 days. I did have some feeling of a loss of balance between months 2 and 6 or so. I stayed off my bike for a few months just because I was being very careful and feared being off balance and on a busy roadway which I thought would prove to be a bad combination. I haven't been kayaking since but that is only because I don't have any time to get away. It is on my "to do" list. My last MRI was at 18 months and tumor has continued to shrink and they don't want to see me again for two years. Life is good!

Good Luck!

Michael

[Sue]

Bruce, I also appreciate your thoughtful, intelligent posts and am so glad you are helping people to see both sides of the story.  I, too, am rather aghast at how doctors just slide a person towards surgery without revealing what's behind door number 2.  My choice would be non-invasive first, brain surgery second (unless, of course, this is the only option due to other circumstances such as size and location).

Sefra22 -   Gamma Knife usually does what it's supposed to do. It kills the bugger.  It's just that it takes a little longer to do that than scooping it out of your head.  The only downside that I can think of is that a person then has to wait and see what happens in 6 months, and then 6 months after that, and then maybe a year after that.  I am going on 9 months since my GK last April and I have another MRI coming up.  Hopefully I will get news that necrosis has begun.  But if I don't then I will have to wait until the next time.  I still have my symptoms that I had before I went in.  I still have tinnitus (surgical patients usually retain that as well), I am still "severely" deaf in my left ear and I still have numbness on the left side of my face (which includes the inside of the left side of my mouth). My doctor hoped that the numbness would go away, but I have resigned myself to all of these symptoms for the rest of my life. If something gets better, then wonderful. If it doesn't, then I figured it probably wouldn't anyway.  I don't have, for some reason which I am grateful for, dizziness or balance problems to a degree that is debilitating or bothersome.  I did notice this when I walked on the soft sand at the beach, however!  Very weird.  

So far I am not sorry I had Gamma Knife.  Good luck to you in whatever treatment you choose and recovery.  

Sue in Vancouver, USA

[Sefra22]

Sue,
I am sorry to hear that you still have symptoms after treatment. I really don't expect there to be any improvements in my hearing, but I am grateful that I don't have any balance or facial issues, and only mild tinnitus. For that reason, I want this done sooner rather than later so that hopefully I won't develop them. I haven't walked on the beach in a while, but I sometimes feel a little dizzy after getting out of the car when I am a passenger. Never when I drive, though. Very weird as well.
Lisa

[Derek]

Hi Derek,

Well, I can scan the article and try to post somewhere..... let me see what I can do. It was a terrific article.  Will advise.

Phyl

Hi Phyl...

I emailed the ANA website admin a few days ago requesting info re becoming a subscribed member in order to access the relevant newsletter that you referred to concerning the pros and cons of the various radiosurgery treatment options but so far I have not had a response.

I would llike to read the article and wondered if you had been able to asccertain a method of non-subscribing members being able to access the item?

Regards

Derek

[kindness]

You may find it helpful to watch a live WebCast today at 4:00pm Central time done by the St Joseph's Hospital and Marshfield Clinic physicians in Central Wisconsin. The site to find this webcast is www.or-live.com The case will be an Acoustic Neuroma patient, and you may find extra information valuable in your decision making.  Questions will be welcomed. Wishing you the best in your decision making.  Gamma Knife is certainly non-invasive and well tolerated.  In our experience the outcome has been strongly positive. God Bless,