NF2 patients have different problems

[Jeff]

As a follow up to my post yesterday with Dr. Medberry's comments on effectiveness of Radiosurgery on NF2 AN's, below are some of the  studies he referenced which he was kind enough to provide. Again, just offering it as information for those who are interested

Mark

Thank you Mark for providing these references. They are indeed interesting studies. However, I am not sure that they provide very substantial reassurance for me personally. Clearly, you are far more versed in the field of radiosurgery than I, so I wondered if you (and anyone else who cares to comment) could help me to work through these questions. Please let me be clear that I would not presume to try to persuade anyone to choose one method of treatment over the other. I simply want to understand better the studies that Dr. Medberry cited. I have inserted my questions/comments after each citation.

Here are a couple of references:

Wowra B, Muacevic A, Jess-Hempen A, Hempel JM, Muller-Schunk S, Tonn JC. Related Articles, Links
Outpatient gamma knife surgery for vestibular schwannoma: definition of the therapeutic profile based on a 10-year experience.
J Neurosurg. 2005 Jan;102 Suppl:114-8[/b]

This study includes a total of 10 patients with NF2. Can this provide statistical significant evidence either for or against radiosurgery treatment for NF2 patients? I would like to see a study with a larger number of NF2 patients.

Kida Y, Kobayashi T, Tanaka T, Mori Y. Related Articles, Links
Radiosurgery for bilateral neurinomas associated with neurofibromatosis type 2.
Surg Neurol. 2000 Apr;53(4):383-89; discussion 389-9

The average last follow-up for this group was 33.6 months. This seems a very short period of time. Given the fact that those with NF2 are likely destined to have a lifetime of dealing with various tumors, I would certainly want to see longer term results. Any thoughts?

Subach BR, Kondziolka D, Lunsford LD, Bissonette DJ, Flickinger JC, Maitz AH. Related Articles, Links
Stereotactic radiosurgery in the management of acoustic neuromas associated with neurofibromatosis Type 2.
J Neurosurg. 1999 May;90(5):815-22.

Again, only 10 patients were followed for longer than 5 years, bringing the longevity of the study into question, at least in my mind. 

One of the things I dislike about electronic communication is the difficulty in conveying tone. Please allow me to stress that I am only seeking to understand the issue more clearly, not be disrespectful to anyone. I am not here to recommend surgery. My family is quite experienced with them (5 AN surgeries in the past 4 years); and I wouldn't wish it on anyone.

For those who comment, I thank you in advance.

Jeff

[Mark]

Hi Jeff,

I'm not sure they provide any definitive answers on the effectiveness of radiosurgery for NF2 either for the reasons you outlined. Whenever I look at research some of the first things I look at, as you did, is sample size and methodology as well as duration. I had not looked at these two in depth but simply passed them on as what Dr. Medberry had seen to date on the subject. I did not get the impression from his comments that there were a lot of good studies which isolated the NF2 population specific to AN's. So they give some sense that there are studies being done , but I would agree that neither are something for an NF2 patient to hang their hat on at this point in time. I would also add that I amended my original post to include subsequent comments from Dr. Chang at Stanford indicating that in their experience success rates for NF2 were lower. He didn't provide any detail or reference a study so I'm not sure what that means. However, my guess is since success rates on unilateral AN's is around 98% that lower does not mean it doesn't work but maybe has a success rate of 75% or 50% or whatever. To your point, given the challenges folks with NF2 have with multiple AN's and recurrence it would be great for more effort to be put into what % of success radiosurgery offers.

Mark

[russ]

 "We use a higher dose for NF2 patients."  As quoted by Dr Chang.
  Probably not cool as the conversion rate to malignancy of irradiated NF-2 mediated ANs is about 6% with standard radiation protocols.
  Leans toward a Dr Lederman mind set where a basketball can be radiated. "We WILL stop it's growth." He claims no Tx failures of spontaneous AN or NF-2 AN but in reality, there are many.
  There are several reasons for his removal of Dept. head at SIUH and arrival at Cabrini which the general populace will never know thanks to white washing and politically correct statements by a law suite ladened SIUH.
  Please; Dr L, avoid!! Chang, if you have NF-2.
  Russ

[Mark]

Russ,

How do you make a jump from Dr. Chang's quote to the Dr. at SIUH who most everyone would agree has been the one radiosurgeon with the most questionable practices and bad outcomes. Dr. Chang says NF2 patients who choose radiosurgery have a higher dose and you equate him to the guy in NY radiating a basketball?!! A higher dose could simply mean going from 6 GY to 7 GY, you certainly have no information to draw a conclusion and throw out an irresponsible comment that connects him with Dr. L who went over the top in what he tried to treat with radiosurgery. Gimme a break!  Dr. Chang also indicated that NF2 AN's were harder to control with either surgery or radiosurgery so why do you say he claims no treatment failures? If you want to post that you have a concern with an NF2 patient receiving more radiation then that's fair. To take one non specific quote and state that it's equivalent to the guy at Staten island and his practices is flat out inappropriate. You just became the equivalent of Dina Goldin's Hall of Shame over on the AN Archive disparaging a physcian without justification. 

For someone who preaches about the "compassion" over on the ANAway message board you certainly have a tendency to drop some negative comments in your posts. You can now go back and bad mouth me and some of the others on this board with your friends over there as you have in the past. BTW , thanks for the concern over my finding the Brittany Spears web site, I appreciate it .

My apologies to everyone else on the board for the post, I just don't appreciate these type of irresponsible statements

Mark

[ppearl214]

No worries Mark. I see that Dr. Chang did your CK (based on your sigline), so as a patient of his (or former patient), you certainly do have a good insight into him and his work.

I appreciate that others here try to share experiences with certain facilties and medical professionals.  It helped me in making my decision and I certainly do go by other's recommendations.  I know NF2 AN's are a delicate situation and I really haven't seen too much published by professionals noted in this thread, but I'm sure each one has some validation in it's own right. Being able to substantiate a commentary is what I rely on.  I respect what Russ and Mark have written and appreciate your thoughts on this subject.

My hope, based on the original intent of this thread, is that more data is available to NF2 AN patients in helping to deal with their situations.  Having a separate forum for NF2 is a very worthy thought and hope that all NF2 patients can find the info they need to deal with their situations.  Be well.

Phyl

[jamie]

  Probably not cool as the conversion rate to malignancy of irradiated NF-2 mediated ANs is about 6% with standard radiation protocols.

Russ, I am just curious where this 6% conversion rate you cite for AN's is coming from. I am aware that about 5-6% of extracranial tumors of all types associated with NF1 or 2 can become malignant, but it seems to me there are far too few case reports of malignant intracranial neuromas, NF or otherwise, to support such a claim. Perhaps you could share your source, I would be very interested to read it.

 

[tony]

Hi - check out the Sheffield Gamma Knife (ROYAL HALLAMSHIRE- UK) results on the Net
treatment of 100 NF2`s over 10 yrs - not as good a normal A.N. s but VG nonetheless
the NF2 crew simply did not believe them.
NF2 is harder to treat but the results are improving
Best regards
Tony