Any thoughts on this?

[rcaldw]

Well, it is now 4 years since my treatment in Houston using the Novalis.  28 treatments.

I started having some facial twitching in the last 2 weeks.  I've been a bit stressed and fatigued.  So, my doctor had me come in a bit early for the MRI (I was on an annual schedule).  He says that technically the MRI doesn't show change, but that a 1mm growth is possible.  The reason why he said it was technically unchanged is that the MRI can have a 1mm variation.  He did say, however, that he thinks he sees some change in the center of the tumor, and that he wanted to consult with the radiologist and another specialist and will call me next week.

He said the facial twitching would normally show up, if it was due to the radiation, earlier than 4 years.

The twitching could be explained by the stress and fatigue except it is all on my left side, the side of the tumor.

Any thoughts?  Btw, my tumor size was 2.0, so it is fairly large, and was already pressing on the brain stem.  I don't have much room for it to grow before they would have to go in and take it out.

[leapyrtwins]

rcaldw -

as you know, none of us here on the Forum are doctors, so I won't even begin to speculate on what might be going on with you and your MRI.

Just wanted to wish you luck and ask you to please keep us updated on your situation.

I'm curious to see how it turns out.

Hoping for the very best for you,

Jan

[rcaldw]

Thanks Jan for your wishing me well.  I completely understand that no one on here is a doctor, but I don't mind a little speculation, after all that is what I'm doing until next week, so might as well speculate with me!

I'm not upset or anything, and I have calm and peace about whatever the news will be.  I'm just curious if anyone has experienced anything similar, or if people ever have symptoms that could indicate continued growth, only to find that it is unrelated.

I might add, I have also had some headaches the last month, and that isn't like me.

[lori67]

Hi "r" and welcome!

I didn't have radiation, so I really don't know much about what to expect, but I would think that experiencing the twitching 4 years after the fact sounds a little odd.  I would think something like that would have happened already if it was due to the treatment.  But, just speculating - because, like I said, I don't really know!  As the old saying goes - "speculation loves company".  That's a saying, isnt' it?   

That's good that your doctor seems to be on top of things and is asking for input from other doctors.  I hope you get some answers soon.

Lori

[leapyrtwins]

r -

glad to see you don't mind speculation.  I'm the type who generally finds speculation leading to worrying, leading to stress - and the majority of the time I find I lost lots of sleep over something that turned out to be nothing 

I had surgery, not radiation, but for months leading up to my first post op MRI I was convinced I had multiple "signs" of regrowth.  Thankfully I was wrong.

So as long as you're cool with speculating, are not upset, and have calm and peace, I'm right there with you - and Lori 

Carry on 

Jan

[sgerrard]

I'll speculate.

Dr. Kondziolka, the radiation expert at Pittsburgh who was at the symposium in Chicago, is a big believer that too often small signs are taken as indicating growth, when in fact they are just little spasms, or whatever you want to call them. Even four years later, the tumor area can get a little irritated, and the area around it can get a little inflamed, and if it is close to a nerve, you can feel something new. He wants to see several mm of growth on several consecutive MRIs before he is willing to say the AN is really growing again. Most of the time it isn't.

So odds are that you your AN is not really growing again. Just take two Ibuprofen, and call me in the morning. 

Steve

[rcaldw]

Thank you for all the replies, and Steve, that is encouraging.  I hope you are correct.

Richard

[cyrmom2]

"He wants to see several mm of growth on several consecutive MRIs before he is willing to say the AN is really growing again."

Thanks for posting this Steve! 

Cyndi

[rcaldw]

Got the news back from my Dr., as he consulted with others in his group.  It looks like it has grown 3mm since the first MRI after the radiation treatment.  They decided they want to watch it every 6 mos. now.  I am going to begin to at least think about what might be next if surgery is required one day, so I will begin to consult with a Dr. friend of mine who has some connections with several surgeons who regularly do this kind of thing.  I obviously hope surgery isn't needed, but reality is reality, so we will see what happens next.

Blessings, and thank you for the feedback.

[leapyrtwins]

r -

thanks for returning to update us - and for ending the speculation.

Sorry to hear about the growth, but it sounds like you have a good game plan in place.

Like you, I obviously hope surgery isn't needed but I can assure you that if it is you'll get through it.

Lots of us have - and we're here to help you in any way we can.

Best,

Jan

[Jim Scott]

Richard ~

I'm sorry to learn of the confirmed growth of your AN but this is always a possibility, albeit a small one.  Although removal surgery may or may not become necessary, semi-annual MRI scans are certainly called for.  Should surgery be indicated, I'm sure it will be successful.  The fact that you're looking into surgical possibilities now is prudent.  I hope you won't need surgery but if you do, at least you'll be prepared.

Jim

[Goldie]

Hi, Richard.  I'm in the small minority of those who "failed" GK and had enough growth to warrant having surgery 3-1/2 years later.  Generally the thought is that it's not good to have surgery after having GK, but I just wanted to share that I am a success story.    Although I was having facial spasms and we knew the tumor was pressing on my facial nerve, I have no facial paralysis as an after-effect of the surgery, even to the surprise of my surgeons!  I hope you can still avoid surgery, but know that it can turn out well.  Wishing you all the best!

Denise

P.S.  Just wanted to add that if you do reach the point of having surgery, please be sure it's someone who has dealt with radiated tumors, as it is a more complicated surgery and you want to be in the best hands possible.