balance problems post radation

[MarkM]

I had my radiation surgery about four months ago. I had no balance or dizziness problems before the surgery.I started directly after ,and they went away for about a month.Then they came back stronger and now they seem to not be so bad unless I over exert. Any one know if this is temporary permanent?

thanks Mark

[Sefra22]

Hi Mark,
I had never experienced vertigo until about 4 months after GK. It lasted for about 2 months. At first it happened out of the blue, even if I was sitting watching TV. I used to make it worse by sitting on the edge of the seat with my head between my knees like they tell you to do if you are going to faint. I learned pretty quickly NOT to that!

After the first few weeks, I would get it like you are if I exerted myself. The biggest trigger for me was carrying groceries into the house. The combinaton of balancing the bags in my hands and walking up steps was too much for my brain to handle. It was also difficult for me to walk on uneven surfaces like cobblestones at that time.

By the 6th month post GK, it was virtually gone. I was prescribed a streroid by my doc, but told only to take them if it got really bad, as once I started I would have to be weened off of them.  Fortunately, I never did take them as my episodes didn't last more than 10 minutes.

I still struggle a bit with balance, but I was told that is from the damage done by the tumor and not the GK. It's really not too bad, as long as I don't turn corners too fast!

Hope you feel better soon,
Lisa

[MarkM]

thanks Lisa
I was abit worred until today. I viewed alot of blogs and realise were not alone.The Dr.s Don"t tell you but so much. I have been extremly active trying to finish building a log cabin I started before all this hit last April. I thouhgt after the first couple of weeks I was home free.I was not aware of the long term eficts.Thankyou so much for you response.

Mark

[ppearl214]

Hi Mark and welcome. Some of us know Cumming GA very well and good to have you here!

Based on your post history, you do not elaborate on what was done so we can better answer your questions.... how big was your AN and where was it located? What kind of radiosurgery did you have and where (treatment faciltiy)?  Prior to treatment, did you have any symptoms and what side affects are you experiencing now besides balance and dizziness. Please keep in mind the 8th cranial nerve has been affected by the growth and potentially by the treatment, so balance and dizziness, unforutnately (regardless of what kind of AN treatment you have) can be affected.  did the radio-onc prescribe any steroids or anti-inflammatories for post treatment?

Please elaborate more so we can do what we can to help.

Again, welcome... good to have you here.
Phyl

[sgerrard]

Hi Mark,

No one knows for sure in any particular case, but it is common to experience things the first 6 -12 months after radiation that eventually fade away. I had an issue similar to what Lisa mentioned, except for me it was taking the trash out the back door. Never dumped it, but came close several times. I still get the occasional bump turning into a doorway too quickly as well, but I hardly notice it anymore.

Hopefully it goes away with time for you as well.

Steve

[MarkM]

Thank you to your responses to my post. I am sorry I was a bit rude by the way I just came blasting into the group with no back ground or even a hello. I was so focused on the answer I for got my manners ,my an was found in early April 2008 I had been getting colds for couple of years which always seem to end up in my right ear. I really never gave it much thought. June 2007 my family and I went on a flight to see my oldest daughter. When we were landing I lost all hearing in the right ear. It came back in about two hours. I didn’t think much more about it.
During the fall I noticed my hearing wasn’t quite as good in that ear and I was hearing a slight ringing. I wasn’t that concerned and I was a bite busy trying to build my cabin. In March I went to see my Dr. She suggested that I go see a E.N.T.  They ran some test witch confirmed that I had lost 10% of my hearing in the right ear. They wanted to run some more test just to rule out a growth. Then the ran the MRI and found the an. It s size was 9mm x 5mm x5mm. I then had refers to other Drs.  I then meet with Peachtree neurosurgeons group, and they paired me up with Dr Morrison. We meet and discussed all of my options. He thought that sense my an was small and that I still had good hearing that one dose liner radiation was the best option. He then set up a meeting at North Side Hospital for me to see the machine. It is called trilogy. I also meet my radiologist -collagist Dr. Mcelveen. She was extremely helpful. We talked about the surgery and the different machines gn, cn she explained the differences. Both Drs told me that trilogy is the machine used at Emory. She gave me some pretty positive statistics about hearing retention and success rate with little complications. The surgery was set for June 4th 2008. All went well and as planed. That band around my head was worse than advertised   but besides that all was well. I don’t know who could work the next day. Day five I went to Wal-Mart with my daughter and almost passed out. After that things seemed to level out. I was doing real well stating July 4th. I might have overdone it working on the cabin.
Early September the light headedness kind of started and it scared me a bit. I had my four month MRI Every thing looks good no change Except for what they called post radiation Benin change. I guess that’s mild brain swelling. Most days I feel good some days I get a little light headed. Weather and head colds do seem to affect me some to.  Most of all I fell pretty darn good I also still have good hearing. Well guys and girls there it is. I hope this introduction is a bit better. I will be talking to every one soon. Thank you for letting talk in the group.
Mark           

[ppearl214]

Hey Mark,

Thank you for taking the time to share this with us. Ah, know Northside well... my nephew was born there 31 yrs ago today   I lived in Dunwoody/Roswell and my fam still there.

There are some folks here that have had Trilogy done. You can do a "search" option here (in upper left corner) for "trilogy" and you see end results showing those that have had it done.. and some post-treatment experiences.  I've been wanting to learn more about it (as a Trilogy center just opened near me here in Boston and trying to follow along with AN treatments).

Now, from what I can share is this.... we know that, regardless of which radio-treatment option is chosen (ie: CK, GK, Trilogy, FSR, Proton, etc)... there are many things that can crop up post treatment, esp. in the first 1-1/2 yrs. Now, not all folks experiences these things but they can happen.  You are in the timeframe that if tumor swelling is occuring (on its way to tumor death), you may want to check with the radio-team at Northside to see if possibly they want to recommend a short term course of steroids (ie: Decadron, etc) or OTC anti-inflammatories.  You may experience ear/head fullness, enhanced tinnitus, some balance issues, etc. There are many discussions here about these things as they seem to be common (although not always occurring) for AN patients overall (some not just to radio-patients).

Please take a moment to really peruse the site and use the "Search" option for particulars that you may want more info.....

BTW, it's not "letting talk in the group"... heck, none of us signed up for this "journey"... but, we make one heck of a team in understanding what each other runs into.  "Welcome" sign is always on the door for those that endure as we do.

Again, welcome!
Phyl

[MaryBKAriz]

Hi Mark,

Boy, I identify! I was diagnosed late March of this year and I am now 4 months post CK. I was dizzy beforehand and continue to be that way. I did some vestibular exercises which helped until I got the more "serious" ones. I did continue them until I realized I was getting worse and worse. I have reverted to the simpler ones and they do help.

I have the jumping eyes, also. I found this out at my vestibular testing Pre-CK. I am having problems when I am moving by foot or car especially at night. When there are many visual stimuli, I also find it gets worse. I am learning to deal with it and hope as Steve says, in time I will adjust and things will ease.

Cheering you on here in AZ!

Mary

[Sue]

Hi Mark,

Just wanted to add that I did not notice any balance problems with my AN until late in the game.  But, they were relatively minor compared with some.  Anyway, after my GK, things were a little worse.  I noticed it on soft sand, and uneven ground.  Now that is gone.  Mostly.  I'm sure I still have some minor things going on, but I'm also 62 and some of it is starting to blur with aging, sad to say.     Anyway, for a great explanation of how your balance system all works together go to this link.  It's really interesting and it really helped me to understand what I've been experiencing.  Especially before I had other AN symptoms, I had things that I now know were caused by my AN.  I wished I'd read this article at the beginning of my AN journey.

ttp://www.hearinglosshelp.com/articles/balancesystem.htm

Best of luck to you,

Sue in Vancouver USA