gk-decrease in size of AN

[kathy g]

I do not know if you remember my situation but I have an AN and another mass on my skull which the doctors consulted measured differently.  Some said the masses were growing, could be cancer, might need a spinal tap, biopsy, etc.  Other doctors measure the tumors as staying the same size. The oncologist said if I had brain cancer, I would have had symptoms. It has been confusing. Many doctors were critical of the GK process.  THey said I would have brain damage from the GK and that I would have to have the operation anyway, and it would be harder to do after the GK.

Recently I started feeling much better, not as much fullness in my ear, my mouth not numb, less  dizziness. Had an MRI last week, was very nervous because I thought they would still want to operate even if I did feel better.  The MRI showed that the AN had shrunk quite a lot.  One doctor said that my AN was cystic which can be treated well with GK. 

I am really happy that I made the GK decision.  Still feel like I am walking on eggs.

[kathy g]

According to the lab report the AN was 16x27x17 mm in Dec. and is now 12x12x12 mm.  But, as I said, every doctor measures them differently.

[mk]

Hey Kathy,

it is great to hear from you. Congratulations for the great result, wow, do you mean that from 27 mm in its larger dimension it shrank to 12 mm? This is impressive. Even better, it is great that you are feeling well know. Way to go. What about that other strange mass?

Marianna

[sgerrard]

It's good to hear you are doing so well, Kathy. I wonder if the cystic part of your AN just popped, leading to the reduction in size?

I guess it is normal to feel like you are still walking on eggs. Just think of them as hard boiled eggs at this point.

Steve

[kathy g]

Just heard from my doctor who did the gl andhe said that the gl killed the cellsthat make the cystic fluid so that is why the fliuid decreased do much. His measurements were on may 2009 28x26x17 mm and now it is 20x15x12 mm and the volume is 1/3 of the original.

So it is the water in the cysts leaving that make the dramatic change.

Thanks for your responses and support.

[Jim Scott]

Hi, Kathy ~

I didn't have time to respond to your first post but I'm glad I waited because your follow-up message was very encouraging!  I think those eggs you're walking on will turn to cobblestones very soon. 

Jim

[kathy g]

Thanks.  I think I must have gotten it wrong, that the tumor has decreased 1/3 in volume.  But, it is still good.  It is hard to believe it will last, but if it is water draining out of the cysts, and the tumor is dying, it should not grow back.

When I think of the intense fear that I have had for the last year, I am really relieved. 

[HeadCase2]

Hi Kathy,
  This is excellent news.  The doctor's statement that the volume is now 1/3 is correct.  Using the formula for the volume of an ellipsoid, v=4/3(pie)r1*r2*r3,  the volume went from 6.48 cubic centimeters to 1.88 cubic centimeters.  Note that I do not know what formula they use, and the doctors may have there own tweaks to this formula for calulating AN volume, but we can roughly represent the shape of an AN with an ellipsoid.  It's not intuitive that the volume would drop that much, but it does      ,which is good.

Regards,
  Rob
  

[kathy g]

Rob:

Is that true, the formula?  That is exciting.  It is interesting that it is an elliptical shape.  Are you in the medical profession?

Thanks for your encouragement.

Best,
Kathy

[jazzfunkanne]

great news kathyx

[HeadCase2]

Kathy,
  Nope, I'm not a medical professional.  And I am not aware of the exact formula that an AN specialist would use, but my guess is that this formula is close if not the same formula.   Look at this formula as a first approximation that you can use to do a volume calculation yourself, until your doctor can give you the result of his calculation.
 Don't get me started,  I may start to talk about tensor mathematics    

  I just wanted you to know that what your doctor said about the notable reduction in AN volume was correct.  Although I'm guessing that you misheard when he said it is now 1/3 the volume, you may have heard that the volume has decreased by 1/3.  Either way, I think this is great news! 
Regards,
  Rob

[kathy g]

I agree.  It is great. 

[Lizard]

Kathy,
I'm so happy for you and a reduction in the size has helped your symptoms considerably. Now that you've decided on GK you can take some deep breaths and relax.  The fear you speak of was a dominant part of my pre-surgery journey.  I'm happy you have some peace now. 

Did you ever address what the other mass was?  Or did I just miss it?

Take care,
Liz

[kathy g]

Liz:

Thanks for your post.  I found this great radiologist at UCLA who went through all of my MRIs and decided that the second mass was NOT cancer and not in my brain.  IT is something in my skull, but it is not growing.  A number of the doctors said that I should watch it in 6 months.  What was scaring me was the thought that it might have been brain cancer, which would have been a death sentence.

Best,
Kathy

[yardtick]

Very good news Kathy.  Now try to relax.  I know easier said than done!

Anne Marie