ANA Discussion Forum
General Category => Inquiries => Topic started by: Nancy Drew on June 07, 2008, 06:36:29 pm
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Do bigger ANs cause more problems than smaller ANs like mine. In other words, if I'm just carrying around a "baby" AN, then maybe I should just wait and watch a little longer. I don't like the hearing loss (had some this past year) even though it's not the worst, but I also know that I don't want to lose any more of my hearing. Do you have a better shot at maintaining your hearing if you zap this thing now when it is itty bitty (I'm leaning toward gamma knife)? Also, my AN didn't grow for over 2 1/2 years after diagnosis. Now it has grown one mm. What are the chances that it will grow more and how much. My doctor said at my age (49) it will probably continue to grow. Anyone had small growth, then none for awhile, and then growth again. I guess these are unpredictable. I asked my doctor what would he do if he had this AN in his ear, and he said he would do the gamma knife. I would hope he was being honest with me. Thanks. Nancy
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It is my understanding that size does not matter and everyone is different with symptoms or lack of symptoms. I also have been told that 1mm of growth is actually within the plus or minus and could just represent them getting a new and upgraded piece of the MRI, the angle of your head ect. Did the Dr recommend waiting to see what an MRI in 6month to 1year and then deciding? Hopefully more will post and give you there advice. 16
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16, Yes the doctor said that is an option, but his words stick in my mind about if it was him he would go ahead and get the gamma knife. I would hope he knows more than I do. As for the MRI, I go to the same place every time, and they are using the same machine. In fact the same guy always does my MRI. When I looked at my MRIs from the past years (this was my 5th) the AN has always looked the same. This time it is so clear that the size and shape have changed. It looks like a full moon now whereas before it was a half moon. The hearing loss is what worries me the most. I knew six months ago that my hearing had gotten worse. Wish I had gone to the doctor then, but what difference would it have made since these things grow slowly anyway. I'm just going to be as patient as I can for now. The doctor is presenting my case at his conference in a week so I'll me getting some expert opinions. I am sure it will all come together. Nancy
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Well I will be waiting to hear what they say after next week. It does sound like you have had some changes in the shape and size of your AN and it also sounds like you are starting to have some peace with the way you should proceed. Please keep me posted as I will be anxious to know what you and your Dr's decide. 16
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Nancy -
size matters from a treatment perspective - some ANs are too large to watch and wait and some are too large to treat with radiation - but there seems to be no correlation between severity of symptoms or which symptoms the patient experiences and the size of their AN. Some patients have large ANs and small symptoms and vice versa.
Location of the AN can be more a factor in symptoms than size. For example, if your AN is pressing on your facial nerve it might cause facial numbness.
Jan
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My AN was 2cm (a small medium tumor) but presented some major difficulties. It left my facial nerve looking like that of someone with a much larger tumor. The position of the tumor left me with no choice of surgical approach, (MCF or retrosig would not allow the doctor to get all of the tumor) so I sacrificed 100% hearing discrimination via a translab.
My tumor was also on my brainstem and had to be peeled off. Location of the tumor can be as important as size in some cases. ANs seem to be like snowflakes...no two are alike.
Deciding on which treatment option (or watch and wait) is the tough part. Hang in there.
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Nancy:
As you can see from some of the previous replies, AN size is a factor but the exact location of the AN is just as important when considering the type and timing of your treatment, be it surgery or radiation. If you are actually experiencing AN growth, then timing could be critical. I didn't have a small AN or the option to choose my treatment (surgery was my only option) but you do. That is a good thing and I can tell you want to use the option wisely. It's pretty obvious that you're leaning toward Gamma Knife and that is certainly a viable option for you. It is common to retain hearing functionality at the same or a slightly lower level following radiation. However, I might consider waiting another six months (not a year) and have a new MRI scan to determine if growth is still occurring but of course, that is up to you.
I trust you'll make the best treatment decision and be confident with it, once made. We stand ready to help to whatever extent we can. I just don't want to see you allow fear, insecurity, doctors, AN forum members or anything else unduly influence your decision. Try to remain calm and focussed. Don't put unnecessary pressure on yourself and I think you'll do just fine. :)
Jim
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Jim very well put. I hope that she does not let any of us sway her decision unduly. I really try not to let my experience cloud my posts, however I do believe that the gut feeling is there for a reason. I also believe that when you first find out you may need surgery is not the time to make that decision because all of us do react rather strongly to brain surgery with good reason of course. I just wanted to clarify my position and did not take any offense to your post. As usual we can always count on you for very good well thought out responses (minus the female emotional aspect LOL). I also want to congradulate you on your new found position and the fame that goes with it. They could not have made a better decision adding you and Steve. 16
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I asked my doctor what would he do if he had this AN in his ear, and he said he would do the gamma knife. I would hope he was being honest with me.
I thought I would post a link to a survey done in 2002 at Pittsburgh. It speaks to the question of what doctors would do if they had an AN.
http://www.acousticneuroma.neurosurgery.pitt.edu/docsurvey.html
Some quotes:
Case 1: "You are a 37 year-old neurosurgeon who presents with mild decreased hearing on one side. You have no tinnitus and no balance problems. Facial function is normal. An MRI scan (right) shows an intracanalicular acoustic neuroma and serial scans have shown a small amount of growth. Which management strategy would you choose for yourself -- observation; surgical resection; stereotactic radiosurgery; fractionated radiotherapy?"
Response: "The majority of surgeons stated that they would choose stereotactic radiosurgery for management of their small acoustic tumor (n=283; 43%). Only 122 surgeons stated that they would choose surgical resection of their tumor (18%). Fractionated radiotherapy was chosen by 2% of responders. Interestingly, 240 surgeons stated that they would continue to observe their tumor (36%) rather than undergoing any specific treatment at the present time."
The second case, with a larger AN, showed a shift towards doing surgery. Just food for thought.
Steve
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Steve do you know if that is consistent with the percentages for the lay person? I was just wondering if the additional medical training that we do not have made a difference in treatment decisions or if it was just the same sort of thinking as we as people go through trying to decide. ??? 16
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OMG,
I don't know the answer to that. I think the researchers at Pittsburgh wanted to make the point that neurosurgeons themselves are often inclined to choose radiation for smaller tumors, so it is okay for regular people to choose it. It would be interesting to know what percent of patients are doing that these days.
Steve
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Nancy--
As others have pointed out, the location of an AN can have as much to to with symptoms as the size. And symptoms can be intermittent (at least, in my experience, they have been).
Because my AN-related hearing loss 20 years ago was misdiagnosed, and the only other symptom I had prior to surgery was occasional bouts of vertigo (which I attributed in the months before surgery to an inner ear infection!), I would NEVER have guessed I had a large (5 cm) tumor. This time around, the tumor is much, much smaller, and again the symptoms are very intermittent (very occasional mild-to-moderate shooting pains in my face and teeth), so that I would have probably ignored them again if not for my history. In both cases, it seems, the location of the tumor has kept it from producing terribly bothersome symptoms.
I wouldn't worry about "what ifs" such as whether it would have made a difference to follow up sooner on your hearing loss 6 months ago, as the 1 mm growth the MRI eventually revealed had probably taken place by then. And I'd guess the report from the panel of docs this week will address how best to preserve your remaining hearing.
Glad to hear you are moving toward a treatment choice--sounds as though the entire decision will be falling into place before too much longer...
Hang in there, and keep us posted!
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My experience with symptoms went something like this. In April 2007, I started to feel some mild facial numbness. Then, over the next month or two, I began feeling additional effects from the tumor -- full head, episodes of imbalance, increased facial numbess -- until I was diagnosed on July 19 with a 2.6 cm AN. It was only after diagnosis that I realized why I had been asking people to repeat themselves so often during the past few years (turns out I had moderate hearing loss in the affected ear but hadn't realized it). By August 22, when I was treated, the balance episodes were getting pretty intense. So it's strange. The tumor must have been growing for years without producing any symptoms. And then fairly suddenly I did have symptoms -- and from then on they seemed to get progressively more obvious. My sense is since the AN growth is organic, it shifts around and grows etc and can start touching upon nerves or other brain stuff that it wasn't touching before, producing new symptoms that keep evolving on a day to day basis. That's how it was for me for quite a while -- it's only pretty recently (10 months after treatment with CK) that things have stabilized (with very mild symptoms).
Hope this helps.
Francesco
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Fbarbera,
Your reply was right on target for me in that I also feel the AN is somewhat organic. I feel like my AN shifts around too. I have never heard anyone explain it the way that you did. It was helpful to hear your reply. Thanks. Nancy
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Steve I am surprised you do not know the answer to my question. I thought you knew just about everything LOL. I think it would be interesting to know non the less. 16 ;)
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Nancy,
I have to agree that small vs. larger tumors probably don't make a difference, as in real estate its location, location location. I have (or possibly had small tumor 1.3cm -- that remains to be determined by a follow-up MRI. My doctor thinks my tumor may have recently grown) and in the past 6 weeks lost 66% of my speech discrimination. My tumor is located in the IAC but very close to my choclea (spelling?). In fact he thinks there is a chance it is going into my choclea and that is the reason for the new MRI. I also have balance issues. So as you can see, with ANs, nothing is certain. Hope this helps.
Wendy
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Do bigger ANs cause more problems than smaller ANs like mine. In other words, if I'm just carrying around a "baby" AN, then maybe I should just wait and watch a little longer. I don't like the hearing loss (had some this past year) even though it's not the worst, but I also know that I don't want to lose any more of my hearing. Do you have a better shot at maintaining your hearing if you zap this thing now when it is itty bitty (I'm leaning toward gamma knife)? Also, my AN didn't grow for over 2 1/2 years after diagnosis. Now it has grown one mm. What are the chances that it will grow more and how much. My doctor said at my age (49) it will probably continue to grow. Anyone had small growth, then none for awhile, and then growth again. I guess these are unpredictable. I asked my doctor what would he do if he had this AN in his ear, and he said he would do the gamma knife. I would hope he was being honest with me. Thanks. Nancy
I believe bigger AN's cause more problems following any treatment. Smaller tumors usually have better treatment outcomes but every tumor is positioned differently. Larger tumors tend to make complete removal a bit more difficult as they stretch the facial nerve. Also, hearing is harder to save during surgery for larger AN's. In regards to radiation for larger AN's, there tends to be more swelling involved post treatment for larger AN's. Better results are generally seen with smaller tumors following radiation but this is not universal. It's good that you found yours early. Long term results are very important regarding radiation. Pre-treatment, smaller AN's may cause the same or even greater damage than larger AN's. Nearby structures are pushed against interrupting the blood supply simply because of the small area that they arise. This is the reason people eventually opt for treatment. Your best chances for hearing preservation is through waiting and watching. Even though GK and mid fossa surgery maintain the actual hearing nerve, hearing does usually deteriorate over time. CK is off to a great start with hearing preservation and it should be purued but remember that the results are still short term. Gamma Knife may have worse hearing preservation than CK but we have more long term data on GK. Gamma Knife is designed for cranial use only and has fewer moving parts. It seems that you are unsure which way to go. Keep researching and take some more time. You've already waited over two years. Sure it's gonna grow over time and you will have to decide one day. You can still lose hearing by doing nothing at all but make sure you figure everything out first. Family, work, insurance, medical opinions, other advice, personal desires and expectations. I had surgery four years ago and it still seems like yesterday. The years will go by fast so consider the long term with your short term. I was never the best with many optiopns either. I wanted to know the results beforehand then decide what I wanted which we all know is impossible. Hang in there.
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Hi,
At this point, my only real reason for considering treatment is that I don't want to lose any more hearing. I feel like if I lose any more hearing I won't be able to do my job as a social worker. If I hear worse than I do now, I am in trouble. So this is where I am in my decision making process. With an adult it is a little more acceptable to ask them to speak up, but with children it is often hard to do (especially if you are working with really sick children). I feel like I have a lot at stake here just as each and every one else has here. No one wants to have all of these side effects. It totally sucks. Some days I don't find anything positive coming from this whole process even though my AN is small, and I don't have extremely bad hearing, just enough to bother the heck out of me. There are so many brave people here, and I envy that. Hopefully I'll find something good along the way. Take care. Nancy
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I know what you mean. Even though it's a small AN it doesn't take away the fact that it's there and it will need to be addressed at some point. Damage is damage whether it's caused by a larger AN or a small AN. My wife is a social worker too at a local hospital. She finds placement for various situations. I can understand the stress of your profession. Please know that if one day you do lose your hearing on one side it doesn't mean you won't be able to function at a good level. Yes it sucks. It sucks because you've already lost some hearing and you risk losing more even by doing nothing. We all relate. Just remember (worst case scenario) that you still have another good ear and you would be surprised how well one can function on just one side. My co-workers don't even remember that I'm deaf on my right. Even if you lost more hearing through waiting, radiation or even mid-fossa you still might be a candidate for a hearing aid with any of the three. Your results really do depend on the location of the tumor. The cochlear nerves are immediately below the inferior vestibular branch and makes hearing preservation more difficult. This was where mine was located. These tumors are very indivudual so physicians cannot guarantee the outcomes even in regards to radiation. You can only see so much on the MRI. Anyway, I sincerely hope that you forever keep the hearing you do have left but if you don't you will learn to adjust like the rest of us. What choice would you have? Even though I had useful hearing prior to surgery it was frustrating at times with the distorted sounds so I understand your grief. Best Wishes!
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Thanks FlyersFan! You give nice encouragement, and I appreciate that. Before the hearing loss in my AN ear started, I actually had better hearing in it than my non AN ear. I haven't looked into hearing devices yet so maybe that will be an option I will explore if needed down the road. Everyone has their stories to tell, and it is always interesting to see how people learn to cope. I think wondering what might happen is the hardest part for me, and perhaps if I do lose my hearing I will learn to deal with it as you have. Acceptance brings power to one's life. So many people on this site give me a lot of hope. Thanks. Nancy
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Nancy,
Since you are particularly concerned about the hearing preservation aspect of treatment you might be interested in the following exchange on the CK board earlier today between an AN patient and Dr. Medbery
After CK treatment for an acoustic neuroma, what happens to hearing preservation? Does it drop off over years to come, such as 10 years from treatment? If so at what percentage?
If there is to be any hearing loss, it is usually within the first 2-3 years, although late hearing loss is possible. About 75% of AN patients treated with CK will retain serviceable hearing.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
I'm roughly 7 years post treatment and my Speech recognition score is the same as pre -treatment ( 100%)
Good luck
Mark
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Nancy,
Make sure you keep up with your audiograms. More importantly, make sure you know how to read them. Anything over the 20 line is normal. Mark offered some good advice about the doctors on the CK support group. I thinks it's great that those guys dedicate their time like that. As far as time goes, I still feel that they can only generaize what might or might not happen later following treatment. The question asked was based on 10 years or more and CK had been in use since about 2001. They may have been installed around 1999 but not many were treated until around 2001 or 2002 so ten years would be around 2012.
However, Mark has personally retained 100% speech recognition and that is very encouraging. I still think that for a very small tumor and having losses in your good ear that waiting may be prudent. Steroids may even be able to clear up noticeable sudden losses. If you would like to share more information regarding your hearing and possibly your age that could help with advice. Even though rare, NF2 should at least be discussed if you are younger because the odds decrease over each decade. Just some more information (like you needed it). ;)
Mark, did you break out that old Flyers jersey for the playoffs. If so, keep it out for next year.
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Hi FlyerFan,
I am 49. My AN was found by accident. I wasn't really having any major symptoms at the time, and I can't say that they are the worst now, just bothersome. I just don't want the hearing to get any worse because I know it is frustrating enough as it is. I think you are right that I should learn more about reading my hearing tests. The doc showed me something at my last visit, and I think my AN ear went from about 20 to 35 in a year. I'm not sure about the other ear. Word recognition is the worst part. I feel like I miss out on a lot. Either I don't understand the words or I just see lips moving if the person speaks softly. As for prednisone (and possibly other steriods), my AN doctor suggested that as a possbile option early on. However, I have bipolar disorder and when I took prednisone once for a sinus problem, I sunk so low into depression that I wanted to kill myself. My psychiatrist said to never take steriods again. So I want to be very cautious because I have a fairly good handle on the bipolar right now. My psychiatrist and AN doctor know each other so I think that is something they could discuss. Do you know of anything else that can be used to decrease swelling? I haven't researched that. I haven't seen my psychiatrist in a year so I am sure if I have any type of treatment I will consult with him. I have worked long and hard to stay on top of the bipolar. The best doctors in my area who treat ANs use the same hospital, and they treat with GK or surgery. My doc recommends GK, but his AN doctors are meeting tomorrow to discuss cases so I am anxious to hear what the opinion is going to be. CK is new here, and I am not sure they treat a lot of ANs. Thanks for your input. I still have a lot to research. I have started seeing my psychologist again after a three year break, and she said I should probably slack off on the research for a bit since it has become like an addiction lately. Maybe that is true. I'm going to a movie tonight instead of glueing myself to the computer. I am just worn out. Nancy
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Flyersfan
My Bobby Clarke jersey no longer fits ( before anyone says anything, I got it when I was around 12 ;D), so I'll have to pick a new one for next year. I was impressed with their turnaround from the embarrassing performance last year and was hoping they would get by the Penquins. They look good for next year so I'll keep my fingers crossed. I may even try to see them when they visit San Jose next year if I can get tickets ;)
Mark