ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: aecom on April 15, 2009, 06:41:34 pm
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Hi everyone,
I have a 2-2.6 cm AN (depending on which doctors I talked to) and I am considering whether to have surgery or radiosurgery (CK). Can anyone comment if the symptoms (such as ear fullness, dizziness, headache) will go away after radiation? Thanks!
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The sure fire answer is maybe. :)
Ear fullness maybe not; I still get a little of that, although just a little to annoy me, nothing serious. Dizziness does seem to get better, but it takes a while. Not sure about headaches; sometimes people get them from the swelling, but that goes away over time, maybe with the help of steroids. One year out you will feel better, anyway.
Steve
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each recovey is personal...I am one week post op and am doing fine..and would no change my treatment..I HAve no issues to deal with other then a cold an side of face and weakness...I have picked up my knitting just simple projects(dishcloth) but it self prescribre physio
JO
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As the previous responders stress, everyone is unique in their recovery. I had SRS almost 1 year ago and other than the lack of energy for several months after had no proplems to report. I can only advise to do your research, find the best treatment team you can, and take your best shot. I do not regret going the radiio surgery route and would do it again if necessary. For me, there were too many potentially harmful possibilities from any of the syurgical approaches. Good luck and keep us posted.
Richard
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Hi, aecom:
Unfortunately, what you're asking is not directly answerable, as Steve's reply pointed out. Some symptoms do disappear or abate after radiation treatment - but that cannot be guaranteed. This is maddening, I know, but part of the aggravation quotient inherent with an acoustic neuroma diagnosis. In the final analysis, we're all unique and you have to make your best guess on treatment then hope and pray for the most optimum results - and let it go at that, dealing with any issues if and when they happen.
Jim
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Thanks, everyone!
Since the goal of radiation is to stop tumor growth, the tumor will be there (wish it becomes smaller!) and it will continue to put pressure on the nearby nerves. So it is reasonable to assume that any symptoms associated with AN will not be relieved after radiation. If that is the case, post-treatment life would be pretty miserable. I am very confusing while doing research and after talking to doctors. After reading your feedback, maybe I am wrong and good to hear that symptoms could be improved. I understand each case is unique, but what is the chance of improvement, 10%?, 50%?
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Hi, aecom:
The fullness sensations (which came and went for me over the years) actually decreased in frequency of occurrence following CK. Strangely, my tinnitus also decreased, but I must say that this is definitely not the case for most people (I got lucky, I guess). Before CK, I had both pulsatile and ringing tinnitus. Immediately following CK, my pulsatile tinnitus completely disappeared (it reappeared for only a few hours and very mildly so after a brief period of time, but has been gone since) and the perceived volume of my ringing tinnitus has been, on average, very significantly lower since treatment. My balance was 15 to 20% worse immediately after CK, but is now a little better than it was prior to treatment.
Your mileage may -- make that will -- vary! Everyone is different.
One thing to keep in mind is that the pressure on the nerves is only one stressor caused by the AN. The other is the destruction of the nerves' myelin sheath. Once that's completely damaged, it doesn't matter whether or not the tumor has been removed. That is, the prevailing medical opinion is that the myelin sheath cannot regrow after it's been damaged. So the removal of the tumor may not offer any benefit over radiation in regard to regaining nerve function if the myelin sheath has already been destroyed. (Nerve impulses travel along the myelin sheath and not through the center of the nerve.) But surgery may be beneficial in preventing a nerve from being stretched further by taking the pressure off the nerve. And radiation can sometimes cause the tumor to temporarily swell, causing impacted nerves to stretch further.
I'm 95% sure I'm not giving any false information here, but it's been awhile since I read up on this stuff. Anyone care to correct me or add something I've missed?
Best,
TW
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I'm 95% sure I'm not giving any false information here, but it's been awhile since I read up on this stuff. Anyone care to correct me or add something I've missed?
I believe that the nerves in question don't have myelin sheaths, but have schwann cell sheaths instead. The cranial nerves, being short and well protected by the skull, don't need myelin. That is why an AN is often called a vestibular schwannoma by the radiologists.
But the same principle applies. ;)
I would add that the AN also hijacks blood supply, and can cut off the supply to the inner ear and nerves. Either kind of treatment will result in disruption of the blood supply, which can produce more effects. The AN is benign, but not harmless.
On the positive side, my impression is that most radiation patients feel their situation has improved a year later.
Steve
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Thanks, everyone!
Since the goal of radiation is to stop tumor growth, the tumor will be there (wish it becomes smaller!) and it will continue to put pressure on the nearby nerves. So it is reasonable to assume that any symptoms associated with AN will not be relieved after radiation. If that is the case, post-treatment life would be pretty miserable. I am very confusing while doing research and after talking to doctors. After reading your feedback, maybe I am wrong and good to hear that symptoms could be improved. I understand each case is unique, but what is the chance of improvement, 10%?, 50%?
Hi aecom and welcome. My daddy always taught me never to assume, so here goes....
Like Steve and others noted, "individual results may vary". I am 3 yrs post Cyberknife.... Many post-treatment issues (ie: enhanced vertigo, balance issues, tinnitus, etc), for me, alleviated approx 1 yr post treatment. I have, on very blue moon after the 1 yr anniversary, run into some ear fullness and such, but usually enhanced/triggered by seasonal allergies... or stress (which sometimes enhances my tinnitus, etc). Overall, in my case, much did ease up and some treating docs will note that some patients report diminished issues post treat... and some have not. At last check (2 mos ago), there was visible signs of tumor shrinkage in my case, but not all have it happen.
In making a decision such as ours, to me, it all boils down to the risks and which risks we are willing to confront. I knew that some risks (ie: hearing loss, enhanced symptoms, etc) could occur... and which ones I was willing to face head on. In making my decision, I weighed out the risks, which ones I was willing to go up against if they decided to occur... and knowing them in advance... if they were to occur, at least I knew about it in advanced and educated myself on how to deal best with them. For me, it has paid off... I have won against the risks.
I know you will too. Keep asking questions... research, research, research.. and again, welcome!
Phyl
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My doctor thought maybe my facial numbness would ease up or go away after I had my GK. Ummmm, no, that didn't happen, sorry to say. He and I were both disappointed. Well, I think he was. I KNOW I was! I still have tinnitus too. And, of course, loss of hearing. I never had headaches associated with AN, and still don't. And I do appreciate that, thank you Fate. Everything, except the fullness, remains the same as before (tinnitus I think is a bit louder at times now) but the darn thing is dead, and for that I thank Modern Medicine.
Take care,
Sue in Vancouver USA
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I only found out yesterday for sure that I made the wrong decision to go with radio-surgery. Or at least i think it was the wrong decision. After 5 years post proton beam my tumor is growing again. I of course have no idea what would have happened to me the 1st time around if I had chosen surgery instead but I have had an ongoing battle with my AN since the radio-surgery. Balance was shot..i've learned to compensate by working my a$$ off to get it somewhat close to normal. Headaches started 6 months post treatment and i still have those...topomax pushes them to a background level most of the time. Tinnitus...constant but I ignore it and it doesn't bother me. SSD..complete...what was that you said? No ear fullness, never had that. Bobble head or wonky head...frequent but not bad enough to be a big issue..just feels weird. Used to get vertigo but that has been infrequent. occasional stabbing pains...red hot poker to the brain at the site of the tumor that are very brief.
My tumor was 6mm x 6mm x 5mm at the time of treatment, intracanicular. it's now 1.2 cm x 6mm x 5mm and symptoms are on the increase. You're mileage WILL vary but if I could have read the future 5 years ago I would have chosen surgery. I made what I thought was the best decision at the time after 3 months of research and questions. All you can do is collect as much data as possible and figure out what makes you most comfortable. I hope the science advances to the point where a doc can plug in your personal data and a definitive answer comes out but that isn't possible today. Statistically 90% of radio-surgery is deemed successful (I was one of the un-lucky %10), meaning that growth is stopped or actual shrinkage occurs, that doesn't mean that symptoms don't still happen after.
I think Phyll says it best..its about weighing risk. One of my reasons for not choosing surgery 5 years ago was the miniscule chance of serious complications from surgery. I have two daughters, one was in college and one just starting. There was also less data available (this forum for one) on which to base a decision. If I was going through this today for the 1st time with where my family is (both my girls succesfully on their own) and the data available i would probably choose surgery. Not only is everyone different physiologically but outside factors differ as well.
I wish I had a more positive and better answer for you.
Good luck,
Bob
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Why don't you email Gil Lederman in NYC? He responded to me within 6 hours on his Blackberry. He does the fractionated stereotactic radiotherapy -- low dose which I find very appealing. He's done hundreds of these.
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I"m so sorry Stoneax had such a bad outcome with his radio-surgery. That's not the norm, that's for sure. I think that most people have ended up happy with the decision they have made, whichever way they went. A few regret surgery, and a few regret radiation. I guess that's part of the AN conundrum - what to do?...what to do?..And will it all come out okay and will I be happy with the results? Nobody knows for sure. You just do the best you can do at the time and really, hope it all goes in your favor. I think that most of the time it does, and for a few, not so much. We just can't know how tenacious our own particular AN is going to be. A few are just stubborn and don't co-operate very well. Our symptoms can be stubborn and tenacious too. Some just hang on forever and we learn to adapt to our changing conditions. We humans are good at adapting! Except for a very few who have lingering, restrictive problems, most of us just get on with our life. I hope that's true of you, too.
Sue in Vancouver, USA
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Bob (Stoneaxe), I am deeply sorry to hear your AN is now growing again. I can only imagine how crushing that must be. Please take care and let us know how things go from here, okay?
Wishing you the best,
Tumbleweed