Author Topic: Surgery vs. gamma knife  (Read 790 times)

Ramona77

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Surgery vs. gamma knife
« on: January 28, 2018, 07:17:17 am »
In 2016, I was diagnosed with an 1.7 cm acoustic neuroma during a brain MRI at age 39. I am one of the few patients with this condition and no symptoms at all. My hearing was perfect, my balance nerve working well and my facial nerves were in tact i.e. we found this tumor by chance as we tried to identify the source of some regular headaches.
Luckily, my husband is a surgeon so I quickly got appointments in Yale, Columbia and NYU for consultations.
In Yale, the recommendation was clear: surgery, 3 months out of work for recovery, hearing loss in the left side and hopefully no other nerve damage. Needless to say, I was petrified especially since the surgeon could not promise to take out the entire tumor and I may be left with a residual that could start growing again with time.
A week later in Columbia we had a similar conversation, but the surgeon said that he had patients who had successes with gamma knife surgery (one off radiation to the tumor/no surgery) for small tumors, but for my size he would recommend surgery. When we left 1.5 hours later we had agreed that he would be prepared to try gamma knife as it would not impact the results of a later surgery. I started to feel slightly better and there was hope that I may be successful.
There was only one last surgeon to see. We arrived at NYU to find out they had forgotten our apppoitment. My husband begged to see the doctor for only 10 minutes. By then we we were experts on acoustic neuromas and knew exactly what we wanted to ask for. Luckily they agreed. We had read all research papers on the topic that were published by universities in the past 40 years and our questions were targeted. The doctor stayed with us for 2.5 hours. There was little experience with patients with no hearing impairment at all, but NYU had a good idea how much radiation may treat the tumor while retaining a chance that the hearing is not impacted. The doctor agreed to treat me with gamma knife and to follow my case.
The Gamma Knife treatment was over within 4.5 hours. I was left with 4 small needle points in my skull and nothing was visible a week after. I felt some pressure in my ear on most days but it got less quickly and three months later I felt as if I had nothing. It was April 2017. 6 months after my treatment and time for my first MRI and hearing test. Expectation was that my hearing should likely be impaired by now if the radiation damaged it and my tumor probably swelled due to the treatment and that a first reduction may only be visible a year after treatment. The results were amazing! My hearing was still perfect and my tumor had reduced in size! Until today, I till have no symptoms and the tumor continues to shrink.
I am sharing this story so you can make a choice if you are identified with an acoustic neuroma. If you are not in pain and if you can take a chance: consider gamma knife no matter the size of you tumor. It is non invasive and it has the chance to safe your hearing if you still have it. My quality of life is the proof of it. Gamma knife surgery is not the first that is recommended in many clinics. NYU is leading in this field in the US.
 

Mlamb

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Re: Surgery vs. gamma knife
« Reply #1 on: January 28, 2018, 09:11:45 am »
Happy to hear you had great success with Gamma Knife. Was Dr. Kondziolka your surgeon?

Crazycat

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Re: Surgery vs. gamma knife
« Reply #2 on: March 05, 2018, 11:31:52 pm »
Amazing story! I can only wish things had gone so well for me, and they went well: it's just that I had to wait until I was at death's door before I received treatment.
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

notaclone13

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Re: Surgery vs. gamma knife
« Reply #3 on: March 06, 2018, 09:16:50 am »
Thanks for taking the time to report your very positive GammaKnife experience.

SueLL

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Re: Surgery vs. gamma knife
« Reply #4 on: March 07, 2018, 07:23:27 pm »
I'll provide the flip side of the GK story.  I was also diagnosed with an AN by accident in September 2013.  I had no symptoms, no hearing loss, no balance issues, etc., but I did have a 1.3 x 1.2 x 1.3 AN.  July 2014 I opted for GK at UPMC with Dr. Lunsford in hopes of saving my normal hearing.  I lost useful hearing within 6 months of the GK.  Periodic MRIs showed slight growth/swelling with reported "loss of central contrast."  I experienced periodic feelings of fullness in the AN side of my head, but nothing drastic and was still optimistic for necrosis.  Fast forward to the summer of 2016 when I first noticed a dry mouth, which physicians/dentist did not associate with the AN.  Later that fall I had discomfort in my lower jaw – thought it was dental-related, but no dental issues.  By the spring of 2017 I felt periodic numbness in the right side of my face.  By the summer more facial numbness, right side of my face feels icy cold in 100-degree weather.  The worst symptom is current periodic loss of muscular control of my facial muscles.  The AN is now 2.0 x 1.8.  Actually the tumor has grown and there is a cyst that has emerged from the tumor.  The cyst is leaning on my trigeminal nerve.

I am planning on surgery this summer.  I have been told by two surgeons that GK affects the texture of the tumor making it harder to remove.  I am supposedly the exception to the GK rule, but there are many of us out here.


Diagnosed with 1.3 x 1.2 x 1.3 cm right side AN – September 2013; Gamma Knife at UPMC July 2014; 6-month MRI - 1.5 x 1.2 x 1.4 cm; 6-month hearing test - lost useful hearing in AN ear (was 92% word recognition in 7/14)

voron999

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Re: Surgery vs. gamma knife
« Reply #5 on: April 16, 2018, 12:05:14 pm »
Regarding:
Quote
consider gamma knife no matter the size of you tumor.

If no obvious and pressing issues are present, I would rather do nothing but observe periodically and live my life and take my time to study the issue better.
Do nothing is a valid option and maybe the safer of any knives, if you can afford it and for as long as you can afford it.

This is what I chose for my minor case (so far), regardless of the persisting tinnitus (I have just adapted to live with it).
Remember, once you step under the knife (steel or radio), there is no "undo" button.
Meanwhile, outcome of the knife is less then guarantied to be an improvement.
If there is improvement, this is not necessarily permanent and final improvement either.
« Last Edit: April 16, 2018, 12:08:54 pm by voron999 »
Jan 11, 2016: 4 x 3 mm nodule in the left ......consistent with an acoustic neuroma.

 


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