Returning to the Forum post GK

[Pam A]

Hi All,
I haven't been on the Forum for a long time. When I came back today had to sign in with a new password (forgot the old one) so I'm listed as a newby. I have had my AN since 2004. Been watching and waiting with no problems until my MRI in May this showed an increase in size of 2mm ove last year. In June I went to Boston to have Gamma Knife Procedure. I am due for a follow up MRI in January.
I have had no changes in my life style since the GK. I'll always be almost deaf in the right ear and have gotten used to the sound of the ocean.  Yesterday I started having balance problems. I am not dizzy, just walk like I've been drinking every so often. I was wondering if anyone else had problems with balance pop up 5 months or so post GK.
Pam A

[ppearl214]

Hey Pam and welcome back! Honestly, you are the first person I know that had GK at Tufts (I researched them when I was doing my radio-research) and would love for you to keep us updated. 

Please keep in mind that head MRI's have a total margin of error of +/- 2mm, so if the MRI is showing change by 2mm, you are certainly within that margin of error... meaning, possible no change.  Different MRI machine, different "slices" of views... even different people reading it would make the 2mm difference. Heck, my team at Beth Israel read it differently. My radio-doc will measure my AN.. then, same team, my neuro onc, will measure it... and for both being on the same team, they will give me different measurements (I laugh each time they do).  So, I'm hoping that the margin of error is what is coming into play.

Balance issues can come into play post-radio (even post surgical) AN treatment. Not sure if you have had the chance to read the "Balance" forum here... may be worth a peek. I know of some that have noted it, post-treatment, and give terrific suggestions as to counter-acting the balance issues. Just a thought.....

Thrilled to hear that life is treating you well and that you are doing well.  Please keep us updated on your January MRI.... and thank you so much for sharing this... and most of all... welcome back!

Phyl

[goinbatty]

Hi Pam,
I underwent CK back in January.  Prior to treatment, I noticed balance issues mainly when walking in the dark or with little light.  I've experience a little more trouble with this since then.  Pretty much as you describe it just like I've had a few drinks.  Occasionally I've have a brief balance problem with standing perfectly still.  How crazy is that?!!  I fell a few times when walking down stairs but quickly learned to hold rails if possible and always watch where I'm stepping. 
Phyl, on my first visit to a neurologist, he mentioned that increased salt intake/water retention could make symptoms worse and a diuretic could be used.  I haven't gone that route but when I notice a little increase in balance problems I make sure to drink more water which seems to help.  Also I take Ibuprofen to be on the safe side to help with swelling if that's what is occurring.  Have you heard that about water retention?
Sandra

[GM]

Pam A.

I wouldn't sweat 2mm....that could just be the error factor and/or differences in reading from one Radiologist to another.  I personally do not plan to do anything more until I'm absolutely...positively...sure that it has grown.

If you also have regular hearing appointments this will help you determine how your hearing is doing...and as well all know hearing loss and AN growth are closely related.

Also don't forget it is absolutely normal for the AN to grow over the period of two years (post radiation treatment)...mine grew from 1.8cm (2003) to 2.1cm (2005) over two years.  It is currently hanging out at 2.1 cm (2008).

Hang in there fellow "Zapper" 

Gary

[GRACE1]

Gary,

Thank you for mentioning that an AN can grow after treatment.  I probably read that before and forgot it.  I had GK in Dec 2006.  On Dec 9 I am going for my 2nd MRI since GK.  I had necrosis after the 6-month follow-up MRI, so I feel like it will be DEAD now.  I've only got good feelings about the upcoming MRI. 

Grace

[pearchica]

Hey Gang: hope all is well with you- I have had 3 MRI's since my treatment in Feb 07 and no real change.  (All keep falling within 2mm error range). I think the first follow up MRI is the biggest milestone.  Afterwards its all downhill to easy street!  I do notice now my sinuses or more sensitive this fall than last fall.  Balance is about the same. I am more aware of my condition.  And hearing in crowds is rough. I let people know I am deaf in the left (50%) and for speech discrimination, I need to have them whisper into the right ear).

And yes, these things swell and decrease, but the key is do the cells multiply? (mine haven't to date)  I don't know the stats for GK but for CK its about a 2-3 % chance that it will grow back (cell multiplication).  I am prepared for that small outcome but worse case they zapp it again.  I'd rather do that then surgery.

My last MRI was on a new machine at Stanford so again, they really couldn't tell if it had swelled 2mm or if it was the machine.  Either way, I'm not worried.  The worry was figuring out how to treat the damn tumor!

Hope you all have a happy thanksgiving.  Annie