Considering Gamma Knife Radiation

[Gearbox123]

Hi Everyone.  I am considering Gamma Knife Radiation over W and W. My E.N.T has been very proactive and I think he is a great Doctor. My. Neurosurgeon is also a great Doctor and Happy to have them both. What I find interesting is that E.N.T side has always been more aggressive with surgery and Neurosurgeon  more W and W.  My symptoms of dizziness  and imbalance have increased.  My tumor is very small only 5 mm, but I also suffer from a movement disorder called Dystonia  which is why I believe that they are moving a little faster with thoughts of Gamma Knife.  I have always thought,  that my tumor was a big contributing factor of my movement disorder, but all of my Doctors say that it's another problem of altogether, which makes things more complicated.  I will see the Neurosurgeon on Wednesday.  My biggest concern is the nerve swelling and issues with my balance getting worse. Any feed back on Gamma Knife with other neurological problems would be helpful to hear your story . Thanks sorry for long post . All the best to all. God Bless.

[arizonajack]

I have always thought,  that my tumor was a big contributing factor of my movement disorder, but all of my Doctors say that it's another problem of altogether,

I'm no doctor but what I just read about dystonia would lead me to agree with that.

How does your movement disorder manifest itself?

My biggest concern is the nerve swelling and issues with my balance getting worse.

With a 5mm AN swelling should be minimal with little or no downside.

What kind of balance issues do you have that are separate from the dystonia?

A bigger concern than balance is potential loss of hearing that can occur the longer the AN is given to damage the acoustic nerve.

If you still have all your hearing then time is your enemy.

Read my story at the link below.

[Gearbox123]

Hi Thanks you for your reply. My Dystonia is called Adult-onset it manifests in my trunk and started after my 45th Birthday . It is called Myoclonus Dystonia. I have uncontrollable movements of my trunk with twisting postures while standing. My Neurosurgeons @N.Y.U found my A.N while investigating my movement disorder. I had also complained of fullness, headaches, tinnitus and ear pain. The diagnoses of Dystonia came much later on by movement disorder specialist at Columbia.  Dystonia can not be seen on a MRI, it is a malfunction of a part of the Brain called the Basal Ganglia, which controls movement.  Dystonia is like a cousin of Parkinson's and many people with Parkinson's sometimes get Dystonia. It's like I hit the lottery twice with no money to show for it. What are you gonna do? Medication is giving to treat the Dystonia, but there is currently no cure, my medication helps me  somewhat, they can also help my tumor symptoms because they are in the antihistamine family. They dry you up, take away the fullness, but these are masking the symptoms. As far my balance, I have always felt like I just got off a ship, but as of lately more like a spinning ride. I hope I answered you alright. Thanks again for your concern and reply. Enjoy your weekend.

[Echo]

My neurosurgeon told me that while swelling post GK is quite common, not everyone experiences it.  That's the darn problem with these AN's, everyone is so different both pre and post treatment. 

Speaking from my own experience, my AN was 1.8cm when diagnosed.  I had minimal balance issues, but within a year that started to change as my AN grew to 2.4cm.  I had GK and there was swelling during the first 6 months. My balance became worse and I developed some ocular motor issues.  Basically I struggled through the first 6 - 8 months and then things settled down on their own.  I did not use steroids.  On my 1 year follow up MRI, my AN was back to 1.8cm and my balance was greatly improved. 

Let us know how things go.  I wish you well.
Cathie.
   

[arizonajack]

Hi Thanks you for your reply. My Dystonia is called Adult-onset it manifests in my trunk and started after my 45th Birthday . It is called Myoclonus Dystonia. I have uncontrollable movements of my trunk with twisting postures while standing. My Neurosurgeons @N.Y.U found my A.N while investigating my movement disorder. I had also complained of fullness, headaches, tinnitus and ear pain. The diagnoses of Dystonia came much later on by movement disorder specialist at Columbia.  Dystonia can not be seen on a MRI, it is a malfunction of a part of the Brain called the Basal Ganglia, which controls movement.  Dystonia is like a cousin of Parkinson's and many people with Parkinson's sometimes get Dystonia.

It's almost a certainty that the Dystonia and AN are unrelated. Just bad luck that you have both. But as we get older we tend to develop multiple medical disorders anyway.

As far my balance, I have always felt like I just got off a ship, but as of lately more like a spinning ride.

I never had the spinning sensation but I did have the lurching like I was on a boat or riding the subway or just drunk. That cleared up after my GK.

[Gearbox123]

Hey Thanks for the support and the replies. It is so interesting that each case is so different and difficult in it's own way. One would think just by physics that a larger Tumor would cause more problems?  I am meeting with the Neurosurgeon on Wednesday to discuss the options and will also consult with my movement specialist to see what his thoughts are. Thanks again for your support, will keep you posted.