ANA Discussion Forum
General Category => AN Issues => Topic started by: Dana on June 28, 2007, 10:00:56 pm
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Hi, I'm Dana on Washington state coast....diagnosed within the last month with 1.6 cm AN on right side. Losing hearing right side for about a year, not horrible, but obviously it'll get worse if I don't do anything. Have had balance problems for 6 years, not severe but bothersome (more bothersome than hearing loss). I thought balance problems were result of stress, cuz they started when my late husband was in hospital for 2 months post brain surgery to remove large benign tumor on the medula.
I mention that because he eventually died from the experience. Plus my mom had a cerebral hemorrhage with 5 brain surgeries. She lived 9 years, was my cutie-petootie "child" who never lost her sophisticated humor despite severe brain damage. So, as you imagine, I'm not too hot on brain surgeries, mainly because I saw with my hubby that brain surgery can create ALOT of other problems.
He had to have the surgery -- you don't fart around with the medula -- but since I have a choice, it's hard.
These are my thought so far, and my concerns; what do folks out there think?:
Gammaknife doesn't appeal to me since I found out from docs (at Univ. Wash Medical Center) that once you've done gamma, the AN isn't operable via microsurgery since Gamma basically 'glues' it all together or makes mush of it in any case.
Microsurgery (it would be retrosigmoid in my case) seems to me to cause an awful lot of facial problems which are the kind of "caused by the surgery" complications that I know from familial experience can be worse than any benefits of surgery. Both here in the posts, and reading literature, it seems like almost everyone has facial problems. I'm not particularly vain and my new husband will love me no matter what, but .... twitching, more surgery to correct this or that, and perhaps most importantly, eyelid closure/blinking problems. I say "most importantly" because I have a genetic corneal problem (just discovered 2 years ago) that REQUIRES good lubrication. So far it hasn't really been a problem if I use thick eyedrops at night, and stay on top of the situation.
About balance, which is also a bigger concern to me than actual hearing, my understanding is that in surgery the balance nerve on the one side is "decommissioned" and the other side takes over, thereby improving balance. Whereas, as my tumor grows, I'm guessing intuitively that since it's already caused balance problems, these will only increase. I understand that "return to balance" can takes lots of time and therapy; I'm more concerned about the long term.
BTW, I'm a 57 year old female, otherwise pretty healthy, never really had health problems (of my own, that is!!)
I'm convinved that NOW is the time to act on my tumor if I'm going to do so. I say NOW because it's smallish and in a good location for success with less complications than if I wait. I can feel the aging process slowing down my healing capabilities in general, so if I'm going to have microsurgery, I want to do it sooner rather than later.
So, I'm asking if others think that facial problems seem to often occur post-surgery? Do people develop facial problems solely as a result of the tumor growing? What about balance?
THANK YOU in advance....I'm been reading posts several times a day, just to 'connect' with others in similar situation.
BTW what is "SSD"?
Sorry for being somewhat lazy and not reviewing all the posts before asking these questions, but I'm sure you've all known the feeling of being so stressed, and then exhausted from the adrenaline rushes, that it's hard to think straight....
Hugs to all,
Dana
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Hello Dana--
First I want to agree with Bruce that surgeons sometimes exaggerate the risks of radiosurgery. That's the most polite way I can put it.
Beyond that, I can suggest that www.acousticneuroma.neurosurgery.pitt.edu is a terrific site for distilling information about acoustic neuroma treatment.
If you want to get into the primary medical literature a useful site is pubmed.gov. You can use search strings like <acoustic neuroma radiosugery> or <acoustic neuroma microsurgery>.
My own experience is that I was pushed hard towards surgery by a local ENT. When I did my own research on pubmed.gov, I took the results in to my primary care doctor at my HMO, and it only took him a few minutes to agree with me that radiosurgery was a better option for me (54 years old, 7mm AN, losing hearing fairly rapidly).
As the U. Pittsburgh site will show, neurosurgeons presented with the same facts will not all agree on the proper treatment option.
Good liuck with your research. The good news is that you have plenty of time to do a thorough job.
best,
mac
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Hi Dana
God you have been through a lot. I had middle fossa 14 months ago. My facial nerve was stretched [ not severed ] and i have been dealing with facial issues. I was told it was temporary, probably 3months, then told 6 months, then 1year and now up to 2 years. I have good days and bad days. For me it has been the worst part of the journey. I would have had radiation or " wait and see" if I had to do it again. Like others on this site I was basically told surgery is the only way to go. My AN was 1.7cm. Do your research before you decide what is best for you. These buggers are slow growing so don't rush or be rushed into anything.
Good luck
Lainie.
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Hi Dana
Where abouts are you in Washington? I live in Vancouver and there are several others on here from the Seattle area. I had my GK done at Gamma Knife Center of Oregon at Providence Hospital in Portland. Now there is a Cyberknife at Legacy Salmon Creek here in Vancouver. I had the headframe, but it certainly isn't much of a deal compared with microsurgery. My AN has necrosis, which is a very good thing. I happily recommend my neurosurgeon who steered me away from surgery. Research, research and research...that's all I can say.
Best of luck to you with whatever you decide.
Sue in Vancouver USA
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THANKS to each of you for your response. ALL good points to look into... will reconsider GK more closely.
Sue in Vancouver - I'm in Ocean Shores. I was going to call ANA office tomorrow re several things, one is support group in Portland. Is it active? Same distance Ocean Shores to Portland and to Seattle, so I'll look into your professional team.
Appreciate the help; just calms me down to talk to and hear from ANA folks.
Dana
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Clarification from Dana --
I really appreciate Bruce and others' CORRECTION of my statement about microsurgery after radiation therapy.... and I want to clarify that, although it is true that I got that impression at UW Medical Center, it could've been my perception of what they were saying. The clarification is that I met with a team that included a GK surgeon, a physical neurosurgeon and an ENT surgeon who tried to present all possibilities. ( I suspect they consider it harder and more complicated to do microsurgery after radiation therapy .... )
Again, thanks for straightening out my thoughts so I can rationally proceed to investigate. I've now read some of the radiation posts and see possibilities.
Dana
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Dana
Hey neighbor, I'm just up the road aways from you. (East County) Please contact me via email at
crbledsoe@techline.com
Raydean
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Hi, Dana:
Welcome to the forum. I hope we can be of some help to you.
You've suffered a lot and it's quite reasonable for you to harbor some fears regarding microsurgery Fortunately, your AN tumor is relatively small and non-invasive radiation is very likely a viable option for you. I trust you'll be researching that option in the days and weeks to come so you may make an informed decision on how best to treat your tumor.
Watch-and-Wait could be another option, but that means successive MRI scans, probably once per year or even closer, at first, to see whether your AN is growing or not.
As my signature shows, I has successful microsurgery last year, followed by FSR (Fractionated Stereotactic Radiosurgery) treatments. For AN patients with small tumors, such as yours, sometimes FSR (low-dose, targeted radiation administered over weeks as an out-patient) is another alternative to CyberKnife or GammaKnife.
Lots of options - and you'll want to explore them all, which takes time. Luckily, you have that. I wish you the best. Keep us updated.
Oh, SSD stands for Single Sided Deafness.
Jim
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Hi Dana,
I live in Spokane and had my Facial Nerve Tumor removed in Seattle at the Seattle Ear Clinic. My doctor thought I had an AN and set me up with Dr. Charles Mangham email address: cmangham@seattleear.com At the time my surgery was done, 6/1992 he was the best An surgeon in the NW, perhaps he still is. My Insurance company told me I had to see someone in the Network and when I told Dr. Mangham he told me that he and everyone involved in the surgery would except whatever my insurance would pay them, that was a 40% loss for all of them. I feel extremely fortunate that he did that as I mentioned before the AN turned out to be a Facial Tumor and the doctor I was suppose to have do the surgery was experienced in AN's only and had only been operating for a year. Dr. Mangham's test results showed that I could wait a while for the surgery but I went a head anyway, as it turned out it was for the best. What I'm trying to say is Dr. Mangham did what was best for me, not what was best for him and his income.
On a personal note, I was married in Ocean Shores in March 1977, celebrated 30th anniversary this year! Vacationed in Ocean Shores and Westport in 1987 with our 2 boys, one of our most memorable vacations! Jill Marie
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Jill Marie,
Thanks for the input! I'm finally "settling down" emotionally so I can do some methodical research ... yeah!
If you're ever planning on visiting Ocean Shores, let me know. It'd be great to meet you. You know my email! -- danajbear@yahoo.com.
Thanks again,
Dana
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Hi Dana,
I had surgery 6 weeks ago and they did take my balance nerve. I had a lot of problems with balance at first but now it is so much better. I even ran a short distance last week (ok .... I didn't want the sprinkler at the park to get me ;) ). My facial paralysis is getting better too. All of these area's hearing, balance, facial paraysis etc. are different for all of us and unfortunatly we don't know how it will be until after it is a done and the procedure (surgery or radiation) is a done deal.... then there is no going back.
I think looking at your options and researching is a great. I was diagnosed Dec. 14, 2006 and after a month in shock and fear, I started researching... had 2 opinions (one recommended radiation and the other surgery). You just need to look at all the information (so you can make an informed decision) This decision is very personal for each of us.... your life experiences to this point and how you deal with things ( I am a 'I'd rather know what I have to deal with right away' person -so I chose surgery... instead of radiation - where you don't know sometimes for months if you will lose hearing, have facial paralysis problems etc). Several people told me that I would get to the point that I would make a decision and know what was the right choice - for me. I Honestly didn't think I would ever get to that point ( I had so much confusion and fear at first) but I did come to a decision. Now after surgery - I still stand with my decision. My tumor was small - but on the facial nerve... if I had waited longer I might have had much worse facial paralysis. I had 80% chance of my hearing being saved with the approach used... and it looked good during surgery.. but the hearing nerve is as my surgeon put it "is the whimpiest nerve in the body and yours is already sick". It just gave up after surgery.
I will be praying for you as you research and make the decision that is best for you. If you do decide on surgery... Dr. Delashaw and his team at OHSU have been doing AN surgeries for over 20 years - (In addition to the other brain surgeries he does).
Keep us posted.... and remember we are here to support each other.
Margaret
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Welcome Dana! Hi Raydean! I spent part of my youth in aberdeen and am still in love with the coast. As you can see Dana options continue to present as you do your research. As Jim mentions you have time and have no need to rush yourself. There is no doubt always anxiety knowing you have a neuroma but you are in control. As you learn more the path you decide to choose will become clearer to you. Take your time. There are lots of high quality treatment teams in this country! I started my research initially by getting the ACoustic Neuroma Handbook.
Best wishes-Neal
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Hi Dana -
Read, read and read. Then, interview doctor after doctor until you know what you want to do.
Good luck to you, Kathy
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Hi Dana
I wish you all the very best, and i'm sure you'll come out the other end just fine. You've been through some awful experiences and i don't blame you at all if you're very scared. However, remember that AN has very good prognosis and is a benign tumour that we need to either reduce or remove so that it doesn't impact on other vital parts of the brain.
One comment of yours that made me take notice - that you felt that most microsurgies on ANs appeared to result in facial paralysis. I'm not sure that this is entirely true. I believe from my own experience and research that permanent facial paralysis is in fact rare rather than the norm. Temporary paralysis is common, but that's all it is, temporary. You need to put into perspective that many of the actual patients who have had a completely successful surgery, with no facial paralysis, are more likely to refrain from reporting on this site post surgery. You tend to seek solace and help from such sites when something has gone wrong, which is sad because i think that it is very important for people with good results to post their experience on the site so that the site reflects a more accurate picture and so as to encourage others.
I had a 3.5cm right AN that was compressing on the brain stem significantly. I had microsugery in the Royal Melbourne Hospital ( I did my homework and found 2 excellent surgeons with excellent history for this surgery). My tumour was very vascular and had completely enveloped the facial nerve. I ended up with no facial paralysis, not even temporary. My ballance started returning a few days after surgery.
I wish you all the very best. You have time to consider your options. Goodluck.
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Hi Dana,
Good advice here but I especially agree with SKT's post. It seems that most surgical patients don't have facial problems following surgery and I am one of those people. My facial nerve was completely perfect following surgery. I had some minor issues following surgery which have all resolved. My AN was just over 1cm. so yours is more in the medium range at 1.6 cm. The bigger these things grow the more risk to the facial nerve but it also depends on lacation. Because these tumors are uniiquely sutuated in every patient it is hard to determine what might or might not happen. My research has always indicated that radiation is indeed harder following radiation. Here is one link.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=15630374&dopt=Abstract
IMO, I don't believe that doctors are provideing bad information when mentioning this. Doctors usually endorse treatment within their field of knowledge including radiation. Research Both! It seems that both radiation and surgery are good options. There are no long term results over ten years for radiation even though it's been used for acoustics since around 1969. The newer protocol at 12-14gy has good control rates at the ten year mark and comparable to surgery. 10-20 is still some time away and yet to be seen if the control rates will remain high. Waiting & Waiting is always reasonable. I'm sorry to hear about your husband & mom. I can understand why surgery seems scary. There will be a time when you will need treatment and it's a shame that you will have to make tough decisions but we all have been there and good outcomes could be achieved even with surgery. Wishing You The Best!
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(My research has always indicated that radiation is indeed harder following radiation)
Correction!
My research has indicated that SURGERY is indeed harder following radiation.
P.S. However, good results are still possible (lower but possible)..... if that bridge was ever crossed.
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Here’s the way the U. Pittsburgh site addresses the question of surgery after radiosurgery:
Beginning of U. Pitt. Statement:
First, is the tumor more difficult to resect if radiosurgery fails? The answer to this is not clear. Few patients have required resection, and the opinions of the surgeons we have asked indicated that some tumors were less difficult, some about the same, and some more difficult. In a report on this issue that included thirteen patients who had resection after radiosurgery, eight were thought to be more difficult. However, five of these eight patients had failed resection before they had radiosurgery.
End of U. Pitt. Statement
There are several reasons why the question of surgery-after-radiosurgery is complicated. As this report indicates, when a treatment fails (first or second time, surgery or radiosurgery), the reason may be that the AN is particularly difficult to reach. The fact that an AN has to be treated for a second time may mean that it was particularly resistant to treatment in the first place.
I think there is a further problem with the phrasing of the question. Asking whether surgery is more difficult after radiosurgery suggests that surgery is more reliable than radiosurgery. This is not true. If the point is to get a realistic risk assessment, other questions should also be asked, such as: Is a second surgery more difficult if surgery fails?
The tumor control rates for radiosurgery meet or exceed the rates achieved by the most experienced AN surgeons, and most failures of radiosurgery occur at the upper reaches of the size range for radiosurgery. This means that for most patients undergoing radiosurgery, the question of surgery-after-radiosurgery is moot. In the unlikely event that the first radiosurgery fails, the backup plan will probably be a second radiosurgery. The question of surgery-after-radiosurgery is worth raising for patients whose ANs are at the top end of the size range for radiosurgery, but treating it as an important question for all AN patients to consider is just another way of trying to make radiosurgery sound less reliable than it really is.
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Hi macintosh,
Just wondering if the U. Pittsburg info. you are quoting is a radiosurgery site. It seems that most often the info. I read is slanted towards the main treatment provided by the facility. Are you a AN patient and have had treatment on your tumor .... or are you someone who works in the medical field providing treatment for AN tumors? Just wondering where your experience lies.
Thanks,
Margaret
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Thank you, everybody, for helping me think these options and probabilities through clearly. I also got alot of clear thinking from the UPittsburgh site's video "Comparing Options", and other things on that site. Thanks, Mac.
I'm glad, in my original frenzy, I made alot of "absolute"-ish kind of statements because in correcting me, you guys have clarified many things and made me dig deeper into research. I'm thinking that a new thread should be started that stays at the top of the list (like Phyl's thread on WTT) called "Where do I start?" with a basic outline of how to proceed in one's thinking. First item, for example, might be:
Factors that will affect your decision:
Size of your AN
Location of your AN and what other brain structures it's impacting
Your current symptoms and their relative importance TO YOU
The possible side effects of procedures and their relative importance to you
Your age and health otherwise
Your gut reactions to different procedures
etc.
Overall decisions to be made:
Wait and watch OR some kind of intervention
If you choose intervention, microsurgery or radiosurgery
If microsurgery, which kind
If radiosurgery, which kind
Which medical team?
etc
Some basic resources:
ANA
ANA Discussion board - each post will give you one little (or big) additional perspective on your decision.
Some sites that the longer-term ANA members agree are accurate
etc
Common abbreviations used:
SSD - single sided deafness
Retro - retrosigmoid microsurgery, one of the choices
Translab - translab_____, one of the choices
GK - GammaKinfe, one of the choices
CK - CyberKnife, one of he choices
etc
Maybe a few examples with specifics - How Brucifer came to his conclusion, Phyl came to hers, etc...a couple of each kind of decision.
Anyway, it's an idea. Maybe the above is already in some form in the ANA literature which I haven't gotten yet.
______
So, another statement to which some of you will say, "What? !" I made my decision yesterday to go with GammaKnife. Scheduled for July 19th. I've always made life-altering decisions sort of suddently, but after lots of research (or plodding experience), and they've always turned out good for me. I am a strong believer in instinct-with-intellect.
My AN (to become my "little mummy" sometime in the next year!) is of a size and location that now is a good time to act. My husband Clyde and I are retiring to Panama in the next two years, and although medical care is excellent there and I can come back to US for anything I want to medically, I'd rather do something now. And I have the feeling that my symptoms are getting worse; it could be the stress, but my instinct says it's not just that.
My brain surgery experience with hubby Ted's tumor and Mommy's cerebral hemorrhage (and, actually, Daddy's parkinson's too) was LESS the fact that they died and MORE the constant one-"solution"-leads-to-another-problem, etc etc etc etc (my folks lived 9 years with these conditions - I'm an only child who loved my parents dearly and lived in the same town they did, so it was a daily experience for me). That's why the microsurgery is very scary to me. Not the tiny possibility of death, especially in the case of AN surgery. Ted's tumor was on the medula (breathing, swallowing, etc) and I personally think that the lights and noise of being in the hospital 2 months is what did him in, but that's another story (which BTW they're starting to study scientifically). Plus he was in his 70s; who knows what was the real cause.
I won't go on and on with why I made my decision (well... I already HAVE gone on and on!!!), just wanted you to know. Wish I could be in Philly next weekend, one of the 'hometowns' of my life that I love, but I'm going to be in a cabin at Mt. Rainier, getting a massage, soaking in the mountain atmosphere that I love.
Hugs,
Dana
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Hi Dana,
I'm so glad you have made your decision. I so agree... go with your intelligent instinct. Know you will be in my prayers from now through your procedure... and beyond. It's a great idea to go to Mt. Rainier (I'm from Tacoma originally and love the whole area there) and enjoy yourself.
Wishing you a relaxed vacation...
Margaret
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Hello Marg--
To reply to your queries--
--I'm an AN postie. I had LINAC radiosurgery for a 7mm AN in January 2007.
--I know that the U. Pittsburgh Neurosurgery Dept. is a leading research and treatment center for GK. I assume they also do surgery. They recommend surgery on their website for large ANs.
--I would not agree that the info on the U. Pitt website is slanted. It seems to me that it reports the primary medical literature pretty accurately.
Mac
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Thanks Mac,
Sometimes it is a bit confusing as to where info. is coming from..... thanks for the clarification. Just wanted to know if you were connected as a provider (sometimes they have different info. to share) or were one of us AN people.
In the 5 months of research I did before my surgery it seemed that often (not always) the information offered by a particular site had many more positive things to say about their main area of expertise ( whether it was radiation or surgery ). As my brother (the dentist ) told me... a doctor usually looks at a medical problem from the perspective of his training and how he could best solve/help the patient.
I fully believe every individual needs to make their own decision about what they are going to do about their AN tumor whatever they choose to do.
Thanks again for the reply,
Margaret
P.S. Mac. I did not say that the Univeristy of Pittsburg was slanted - I was making a general comment to explain why I was asking you the questions. Please see below.
Hi macintosh,
It seems that most often the info. I read is slanted towards the main treatment provided by the facility. Thanks,
Margaret
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Hello All,
The website for House indicates that surgery following radiation is much more difficult. House has performed the most AN surgeries (of all types) than anyone including Pittsburgh. House should know more than anyone due to experience. House does favor surgery just like the Univ. of Pitt. will favor radiation (just read their websites). My feelings are that a micro patient would probably view the Univ. of Pitt.website the same way a radio patient might view House’s website (leaning towards one direction). Some might think that House just does surgery and that’s all they know but that’s not true. House performs radiation and when I spoke to Brackman three years ago he mentioned that he was GK certified and had been for many years. However, they usually only perform radiation on the elderly. Univ. of Pittsburgh does surgery too but generally suggests radiation first whereas House would suggest surgery first. There is still a great deal of conflict in the medical community regarding acoustics but the good thing is that both radio and surgery are turning out better results than many years ago. If having it removed gives you the peace or having the growth stopped gives you peace then at least you have these options and can get some closure. It’s a stressful event no matter what. In the original thread it was mentioned that the neuro stated that surgery is harder following radiation. People chimed in and said no way their lying find another medical doctor. This concerns me some because my research enforces the doctors comments. I believe people should be well informed not only in the office but with the folks here as well. I have learned so much through this journey and still learning things today three years later.
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The point I was trying to makeâ€â€and I will try to make it againâ€â€is that the question “Is surgery more difficult after radiosurgery?â€? is a misleading question, something like “When did you stop beating your wife?â€? It is not a way of providing a balanced risk assessment, which is what AN patients need. It is a way of implying that surgery is more reliable than radiosurgery, which is not true.
I think the real question about the information provided by various sources is not whether a site favors one technique or another but whether the information provided accurately reflects the primary medical literature.
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It's interesting as how many medical facilities will publically tout the treatment options that they perform most of the time. As we note here many times, research, research, research what will work best for you at the time you make your decision. Much of the info can be confusing and feel overwhelming at times.... so you may just want to take a step back, take a deep breath, then dive in again to the info......
Each decision is a personal one... thus, by reading all info provided by treating facilities, as well as speaking to others that have had all forms of treatment, IMO, is the best way to make the best informed decision you can make, regardless of what you choose.
Just my 2 cents/pence.
Phyl