tumor grows after operation and radiation

[michaela]

I was diagnosed with an acoustic neuroma (29x26x24mm), compressing the stem, in 2009 and operated in 2010. The surgeon (who apparently wasn’t very experienced) informed me after the operation that he had been unable to remove the whole of the tumor because of heavy bleeding, and also because the sensor for the facial nerve had started responding. The first MRI 3 months later showed a leftover tumor of the size of 13x13x16.
One year after the operation the tumor grew again to more or less the  size it was before the operation (6.3 ccm) and urgent action was needed. Because of the reported difficulties of the operation, I decided to get a gamma-knife (gk) treatment (radiation dose of 13 Gy). Six months after the gk, the neuroma had swollen (or grown) to a size of 10.74 ccm. Nine (9) months later it was 9.07 ccm. At that time the center of the tumor stopped absorbing the contrast agent. Twelve months (12) later, the size was further reduced to 7.31 ccm, and even less contrast agent was being absorbed indicating necrosis of the tumor. Twenty four (24) months after the gk treatment (which is now), the MRI revealed a heavily grown neuroma, absorbing the contrast agent, and slightly bigger than at the time of the gk treatment.
Again, urgent action is needed. The tumor is too big for another gk treatment so the doctors of the gk centre advised me to have a second operation. I understand that an operation on a tumor that has been already operated and treated with a gk is quite a risk. I apparently will go to a center of excellence, this time. Still: does anybody have a similar experience? What do you suggest to do? I am a woman, 44 years old, and I live in germany.

[mk]

Hello,

sorry you have to deal with this challenging situation. As you said, you really need to find the best and most experienced surgeons to deal with your case. There is a centre of excellence in Hannover, a few people here had surgery there and it is likely the most experienced in Europe. I don't know how far you are from Hannover, but I know that people travel from all around Europe to go there. I would strongly suggest to check it out.

Marianna

[panos]

good morning!
Marianna can you please tell me how did they decide to do GK on a 2,9cm tumor. In Europe they have a limit of 2 cm.
Can there be a second GK on a tumor  and  a have a chance to avoid surgery?
How much more difficult is an operation after a GK?
Thank you

[mk]

In North America sometimes they will go up to 3 cm, but this is a long story. I will send you a PM, as I don't want to hijack this thread with my story.

To answer your other questions, most centres do not recommend a second GK, but Pittsburgh has done it and I have heard that they do recommend it occasionally.

There is the perception that operation is more difficult in a radiated tumor. If I remember well the House had a publication where they mentioned that it may be more difficult, however their statistics did not really show any statistically significant difference.

I consulted with 5 doctors. Only one (the least experienced) thought that it is more difficult to operate on a previously radiated tumor and told me that because of my previous GK I would certainly have facial paralysis. One more said that the chance of CSF leak is greater because of scar tissue. The rest said that it varies; sometimes it may be more difficult (i.e. stickier) and sometimes easier. This is true for any AN, radiated or not. Dr. Akagami, who I eventually chose, said that it is not more difficult at the hands of an experienced surgeon.  I asked Dr. Akagami after my surgery and he said that removal was easier than average in some areas and more difficult in others. I had no CSF leaks and no facial paralysis. My general feeling is that at the hands of an experienced surgeon there is no difference and we have seen quite a few success stories here on the forum.

Marianna

[michaela]

hello marianna,
sorry for my late reply! i am glad to hear that everything went well for you in the end. was anybody able to explain to you, why your neuroma first went black, and then started growing again? did the surgeon remove all of the neuroma? i was told, that since things were so difficult at surgery #1, they would remove as much as possible, but perhaps not all. and i am wondering: if some tissue remains, and starts growing again at the pace it has done until now, what am i to do? a second gk? a third surgery? i am a bit concerned, and i distinctly hope that things will prove easy during the surgery!
kind regards
micha_

[mk]

My understanding that even though darkening is generally considered as a good sign, it is not a guarantee that the tumor is dead. Some areas may continue to grow. And vice versa, in some cases there is no darkening, but the tumor stops growing. As always with these ANs there is no guarantee about anything.

The same goes with the possibility of regrowth.  Some times people are told that the whole tumor was removed, but even if a few cells remain there is growth. And in some cases a small remnant is left, but it the blood supply has been cut off and it never grows. The only thing that you can do is to keep monitoring it and hope for the best. I think that generally we have seen very few people here who needed more than two treatments (two surgeries, or surgery/radiation). Someone else may want to chime in about this.

In your case, since the surgery was so difficult the first time you really need the best expertise. Obviously the first time you had sub-total resection, since the remaining piece was so big afterwards. You mentioned that the surgeon was not very experienced, perhaps a more experienced surgeon would be able to perform a total resection.

To answer your other question my surgeon did have to leave a small "rind", about 2 mm, that was stuck on the facial nerve. The remnant did not show up in the previous two MRIs, so I am hopeful that it won't cause a problem again.

Marianna

[nftwoed]

Hi Michael?

   Apparently the size measurements you report are volumetric and not linear. Linear ( in cm. ) is more commonly understood. The volumetric dimensions would be given by a radiation Tx provider.
   In Germany, Dr. Samii has an excellent surgical facility and lots of experience.

[michaela]

hello, nftwoed,
you are absolutely right, these are volumetric measurements, given to me by the radiologists who have been responsible for my case since the gk-treatment (thus the change from linear to volumetric in 2011). You also mention dr. samii, but to my knowing he must be quite old now. Are there people in this forum who had surgery there lately?
michaela

[boubis]

Hi micha_ ... my name is George and i don't know if you allready solved your problem ... i am from Greece and recently 03/2012 my wife 40 years old  was diagnosed with an acoustic neuroma (29x27x25mm), also  compressing the stem.

The 2 best centers to go is  : 1. INI in Hannover   http://www.ini-hannover.de  .   
and the 2nd center is   in TUBINGEN    http://www.neurochirurgie-tuebingen.de/website/index.php?article_id=1&clang=1     where Marcos S Tatagiba is the Doctor .

We decided to go to Tubingen 04/2012 . The operation went well and the tumor is all out .
I 've heard that one patient had the same situation  like you ... with one operation ,  and then gama knife ....and that he/she solved her problem there with PROF TATAGIBA .

Also at  your other question about prof SAMII , yes he is  too old , he was the best with over 1000 ac.neuroma operations .We decided to go to prof.TATAGIBA because they say that he was a student of PR SAMII and that his best operation (that he is in love ) is the acoustic neuroma .

I hope the best for you. Sorry for my english .