One Year Post GK MRI Results

[Nancy Drew]

Hi!

I posted under Post-Treatment Issues, but I thought I'd write a little blurb here, also.  Saw my doctor today, and my AN is one mm bigger.  He said this is expected sometimes.  If it's the same size or smaller next year, then all is OK.  If it's the same or smaller after the 3rd year, then it's probably a "done deal".  If it grows or other problems pop up, then the option is surgery.  But, that is highly unlikely.  I have no post GK hearing loss....GREAT!  Did develop a balance issue...have lost 70% of my balance nerve.  He said this happens in 25% of GK patients.  Never heard this stat before.  Balance issues are just frustrating, and I am sure in time it will work its way out.  He thinks the nerve could possibly die altogether, and then the other nerve will take over.  So, for now I am back in the W&W mode until next year's MRI.  All in all, I think it was a good report.  But, having an AN isn't fun.  With radiation the AN will always be in there so I guess we just have to make friends with it!!!

Thanks for your support.

Nancy

[Jim Scott]

Hi, Nancy ~

Thanks for the update. 

That is definitely good news about your AN swelling just 1 mm, which is not much and seems perfectly normal following Gamma Knife treatment.  The downside of radiation treatment is that the tumor may 'die' and shrink - but will likely not disappear.  Also, MRI scans are going to be a part of your schedule for a long time.  Still, you seem to have gotten through GK and recovery quite well with few problems other than the loss of balance nerve function, which can be overcome, in time, as you know.   May your healing continue, unimpeded. 

Jim

[Nancy Drew]

Thanks Jim.  I always enjoy hearing from you.  You are so positive and upbeat, and that is refreshing.  At least I'm getting better with MRIs.  Just have to work on my OCD tendencies between now and my next MRI in a year.

Nancy

[Vivian B.]

Hi Nancy,

It looks like you have had some positive results which is great. Your balance issues should clear up overtime. It's amazing the fears we get through when you really need to do something, like you said, doing MRIs all the time and waiting for results. But we all get through it right? We need to stay strong and positive and lean on each other from time to time.

Vivian

[davjack]

I'm a newbie. What do you all mean when you say that the balance issues will resolve themselves?
DJ

[cindyj]

I'm a newbie. What do you all mean when you say that the balance issues will resolve themselves?
DJ

Hi, DJ, that typically means the other side of the brain, or the remaining good balance nerve, will compensate for the compromised one on the AN side.  Some folks do some vestibular therapy to help it along, but others just let the brain do it's thing on it's own.  And, it usually does.  Sure there are much better medical explanations that others can give, but in the meantime, that's the gist of it.

Nancy, hey, know we've PM'd recently, but wanted to be sure I hadn't missed wishing you Happy Anniversary officially!  So, Happy One Year, officially   You're doing very well, I'd say!

Cindy

[Jim Scott]

I'm a newbie. What do you all mean when you say that the balance issues will resolve themselves?
DJ

DJ ~

Cindy explained it quite well and I'll venture to elaborate a bit.  Although balance is often shaky immediately post-op, the brain, amazingly, will recognize that the aural input (which is one part of how our bodies balance themselves) on one side is gone and adjust to that deficit.  Sometimes that happens almost spontaneously, often over a short period of time (weeks) but occasionally, it takes longer. There is no template. 

Walking on uneven surfaces and basically challenging ourselves with balance situations is commonly performed or, as Cindy noted, some post-op AN patients use vestibular therapy.  I had a VNA therapist show me some exercises but after 3 visits, she declared that I was no longer in need of therapy, but she suggested that I walk as much as possible, which I did (it was summer) and today, my balance is probably about 85-90% of what it once was (pre-AN).  Regaining near-normal balance function is a typical part of recovery from AN removal surgery.  Fortunately, it's usually successful. 

Jim   

[Nancy Drew]

I sure do hope my balance gets back in order soon.  I never had any balance problems until I had GK.  Issues showed up around five months post GK and gradually got worse.  Had a balance test, and it seems 70% of my balance nerve has died.  My doctor didn't think the vestibular therapy would be helpful, but I'm going to keep it up for at least another month.  I have always had motion sickness so the therapist is working on tracking  And, it is just horrible to close my eyes during most of the exercises.  When I get home after a session, I am usually sick with a headache and nausea.  And, sometimes I get motion sick after the home exercises.  Not sure if this is a good sign or not....like, it gets worse before it gets better kind of thing.  I am now seeing that I have taken my balance for granted.  Now I am "on guard" about where I put my feet, how fast I go around corners, and how I turn my head in different ways.

I owe you a PM Cindy.  Thanks for the well wishes on my one year GK anniversary.

Nancy

[ppearl214]

Hey Nancy

You KNOW I'm cheering you on... I know its been not an easy ride the past year or so, but here's hoping things calm down soon, that you are hanging tough and I'm still watching your progress. Thanks for sharing the update... as you know, it's VERY helpful for those doing their pre-treatment homework....

Hang tough and congrats on your 1 yr ANniversary!

Phyl

[Nancy Drew]

Hi Everyone,

Just a little more to share.When my AN doctor gave me the results of my one year MRI last week, I was really surprised.I thought for sure my AN was shrinking instead of growing.  Here's why I was expecting shrinkage.Three months post GK, I started having these weird sensations in my head.When I went to see my AN doc, he said this is not a symptom of radiation related to GK.He sent me to the radiologist to see if she could figure out what was going on.She was baffled as well so she ordered a MRI.Turns out I had a really bad sinus infection.I had sinus surgery, and the weird sensations in my head went away.Anyway, the 3 month MRI also showed that my AN had decreased in size (slightly, about .5mm).I have since found out that the results of my 3 month MRI never made it to my AN doctor's office.He must have assumed that my AN had grown 1mm since GK.

I decided to go to the source....my radiologist.She said this happens sometimes.That is, the tumor can shrink and then grow, or the opposite...grow and then shrink.She said this is perfectly normal and not to worry.Now, I can put these fears aside knowing that what is going on with my AN is right on track with the radiation.My AN doctor freaked me out since he told me if my AN showed another mm of growth next year, then surgery might be the next option.If the doctor ever pushes surgery, you can sure bet that I will research this one to the max.

I realize now that I overreacted.I also learned that your have to be proactive when it comes to dealing with your AN.Research and questioning your doctor only makes sense.I am feeling so much better now that I have more information.

Nancy