Kat,
Certainly I'm not a doctor and wouldn't presume that a radiosurgeon would give you a different answer without seeing the MRI scans. However, I'll still standby my previous suggestion that relying on someone who just does surgery to judge what a treatment option they aren't involved with can or can not do has some risks. An AN with fliud in it such as you are describing is typically referred to as a cystic AN. The issue of radiosurgery effectiveness on such AN's can be found in both the ANA archives and over on the CK support board. At the end of this post I will copy a string from last November where another patient asked that question.
It is paramount that each of us go with what our heart says is best for us and it sounds like like you reached that point with choosing surgery. I certainly am not questioning that but did want to clarify what I would consider erroneous information from your surgeon on a cystic AN
In terms of the surgical approach, for my 2 cm AN I was given about a 20% chance of saving any usable hearing with the retro. That % goes down as the size of the AN goes up , so I would guess that a 2.5 is even lower. From having read this board for several years as well as several studies, there is a fairly common perspective that retro creates more post surgery issues such as Headaches and does not provide the surgeon with as good a view of the facial nerve as the translab. I am curious as to what % chance your surgeon gave you for hearing preservation. If it matches up with my stats and is very low, the question to ask is whether he feels there is any lower risk to the facial nerve and potential for post complications doing the translab instead. There are a ton of folks here who have done one or the other and can voice their pros and cons to you, but that would be a question I would ask.
Anyway, Best wishes to you for a great outcome
Mark
Here are the Cystic AN posts
Patient
I was wondering if one of the doctors could give a brief description of what makes an acoustic neuroma "Cystic" and what complications that creates. Specifically, if a patient has a cystic AN are there any reasons that CK or radiosurgery in general is not an option for them. There seems to be a theme from patients on the ANA support board that some doctors are telling them that radiosurgery is not an option for a cystic AN
Thanks for your thoughts
Dr. Rosenberg
Cystic" merely describes the presence of a significant fluid collection (or cyst) within the tumor. While very descriptive radiologically, we don't really use this to determine much. In fact, I just saw a 96 month follow-up from Gamma Knife of a large cystic AN that has shrunk to almost nothing and continues to shrink with each follow-up study. I would not say that being cystic, in and of itself, precludes CK or radiosurgery in general.
--------------------------------------------------------------------------------
William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife
Patient 2 in the string
Dr. Rosenberg
I recently had a 2nd MRI and my AN has grown from 1.0 cm to 1.3 cm in 6 months. My neruotologist suggested there was an urgent need to make a decision about treatment because the Tumor had a cyst in the center and he thinks that is why it is growing. The MRI report did not mention the cyst. He also said if I had Radiation treatment that I would never know if this was cancer.
I was scheduled to have Translab. and had to cancel. I have been researching radiosurgery for treatment for my AN. My Neurotologist said I should not have GK or CK for this because it is now cystic. Why has it become cystic and which method would be best to treat it? There has been some discussion on fractionated failures for AN also on some of the forums. Where could I get information on the long term outcomes of radiosurgery on ANs? Also does it make a difference where you have GK or CK? Everyone says you should go where they have done the most.
Dr. Medberry
Yoiiur neurotologist is simply giving you the usual arguments that they give everyone to convince them to have risky surgery. There are occasions when surgery is the best treatment for AN's, but not usually when they are 1.3 cm. I don't know why he says it is cystic since the radiology report does not mention that. Even if there is a low-density area, it could be treated with radiosurgery. We have seen this many times. YOu can be sure that this is not cancer.
THere are real arguments with validity on both sides regarding CK versus GK. Data are not as complete as we would like. The issue is whether fractionated treatment spares hearing. THere is information suggesting that it may, but a final answer is yet to come. At any rate, CK is at least as good, and avoids frame placement, and either treatment avoids the risks of surgery, which are not insignificant. I am overseas but will be back this weekend and if you e-mail me I can send you a presentation comparing various treatment methods.
I personally think you should change doctors since the neurotologist is misleading you. THere are many good neurotologists whho are honest with their patients and honestly tell them reasons why they think surgery is better, and I respect their opinions, although we disagree. I do not have the same respect for practitioners who try to scare people, and the argument that "you won't know if it is cancer" is about the worst abuse in that regard tht I have heard.
Dr. Rosenberg usually monitors this board and hopefully he will also respond, but I answered you because our system for notifying us when there are new messages has recently proved to be imperfect.
--------------------------------------------------------------------------------
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
Dr RosenbergI could not agree with Dr. Medbery more. As above, the whole "cystic" issue isn't particularly relevant. There are reasons to consider surgery but that is not one of them. Moreover, sometimes radiologists call them "cystic" when it means that the tissue in the center has a different water content than that at the periphery - but it's not actually a cyst (fluid-filled).
I would stand by my previous answer. It sounds like getting another neurotologist is quite reasonable.
--------------------------------------------------------------------------------
William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife
