ANA Discussion Forum
General Category => Inquiries => Topic started by: cwilson on July 11, 2007, 07:20:56 am
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I have a 2mm acoustic neuroma. I'm going to meet my Doctor on July 26. I don't know what type of treatment I want to have. Can anyone tell me about the surgical treatment. Have surgical treatment been improve over time? I would love to have your information. Can someone tell me about GK treatment and long term effects. I thank you in advance for your help.
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Hi, and welcome.
I had retrosigmoid surgery for a 1.5 cm AN on 5/31/07; my other option was GK. I chose surgery because I wanted to have the AN removed; I didn't want to wait to see if the radiation stopped the growth nor did I want to deal with lots of followup MRI's. I also wanted to know what side effects I would encounter up front and I'd heard that side effects from the GK can take anywhere from 6-18 months to surface. That said, my neurotologist stressed that everyone is different, has different objectives, responds differently, and that surgery vs radiation is a personal choice in some cases. He feels that if you have a choice, the choice is best left up to you. So he told me about each procedure, side-effects, etc. In the end, I just wanted the AN gone, so I chose surgery.
I have no idea if surgerical procedures have improved over time or not, but I do know that the most important thing is to make sure your doctor has done numerous AN surgeries - you definitely want someone with experience. In my opinion, you also want someone who can answer your questions, put your mind at ease, relate to what you're going through, and is confident he or she can perform the procedure.
The ANA has some excellent literature on ANs that details the available options. I found it very helpful and very informative. It reiterated a lot of what my doctor told me, but it also described things in basic (non-technical) language that helped to clarify what my doctor said. If you haven't read the literature yet, I encourage you to do so.
I think I made the right choice and I am fortunate to have minimal side effects. I had some facial nerve damage for 1 - 2 days post op, but it was rectified with a dose of steroids. My surgery was 7 1/2 hours and I did experience nausea, dizziness, double-vision, and balance issues, but am happy to say they have all cleared up. I spent 5 nights in the hospital; the neurosurgeon would have let me go after 4, but the neurotologist and I felt I needed another night. Today, my biggest issues are metallic taste in mouth, dryness in my left eye (AN was on left) and tiredness (which I hear is normal since I'm still in recovery). I returned to work part time after 2 1/2 weeks (desk job) and full time after 5 weeks.
To me the biggest shock of the surgery was the recovery process; but it's nothing you can't get through. My neurotologist did his best to tell me what it would be like, but I thought I knew better. I had never been hospitalized, except for the birth of my twins (no C-section) and I went home the next day. I had never had major surgery before (only outpatient). So, waking up in the ICU was a bigger deal than I had expected. But, I got better each day I was in the hospital, and have continued to get better every day since then. My scar is almost covered by my hair, which I wear short, and I'm looking forward to a BAHA implant early next year. Although one of our goals was to save the hearing in my left ear, it unfortunately didn't happen. However, I consider the surgery a big success and am glad I made the choice I did. I have to do a followup MRI in 1 year, but I'm confident it won't show anything.
I can't speak for the GK, but if you do chose surgery, make sure you have family or friends to help you during your recovery. I am a single parent, with two 11-year olds, and having my sister and parents help out was a huge asset. For a while you can't lift heavy things, bend at the waist, drive a car, etc., plus you will be very tired. Without the help of others, I could have never done this.
Good luck. I'm sure whatever choice you make it will be right for you.
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2 mm (millimeters) That is extremely small.
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Hi and welcome. I have to also note as Boppie.... 2mm AN is, indeed, very small. Do you have a copy of the written MRI report that shows the exact dimensions of the growth? That would be most helpful.
Again, welcome.
Phyl
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I would very much concur with Bruce's thoughts on MRI follow ups following surgery. Stanford where I was treated has the exact same follow up protocols for both options for the first 4 years and I think most experienced AN docs would recommend something similar. The most favorable studies show surgery with a 5% regrowth rate and some show it as high as 10%. Over the past few years on this site there have been a number of folks who were told it was all removed and received the very unpleasant news that it wasn't.
The odds are that everything is fine and it's gone, but with a 5-10% possibility it might come back, it seems to me that it is just as prudent for a surgery patient to get periodic follow up MRIs as it is for a radiosurgery patient.
Mark
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Hello,
I'm with Phyl and Boppie...2mm is very small (now that I have the metric system figured out). If that measurement is right, you're fortunate to be finding out about it now, before it gets so big that the only option is surgery. Are you experiencing symptoms or was this diagnosed when your doctor was looking for something else?
Betsy
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Brucifer and Mark, thanks for the great advice. Guess I didn't listen closely enough to the doctor's speech. I heard him say that with GK, I'd have MRI's every 6 months for the 1st 5 years and every 12 months for the 2nd 5 years. I was under the impression that after surgery and my 1st annual MRI, that I would be off the hook. Thanks for setting me straight. You guys seem to be very experienced at this stuff; I'm still a newbie :)
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I can only suggest that the poster cwilson do more research before deciding on what surgical approach to take, as this is a highly personal decision. Although surgeons can offer informed opinions on which approach is 'best', I really can't.
As for MRIs: I had two pre-op; the original scan (May, 2006) that 'discovered' my AN and another just prior to surgery a month later. I then had one in the hospital immediately following my surgery, another three months later for evaluation prior to my FSR treatments. My neurosurgeon was skeptical about a follow-up MRI that I had in April. He thought the tumor had grown. I politely disagreed, as my symptoms were gone and I whizzed through all the neurological tests he gave me. Respecting my doctors wishes, I underwent yet another MRI in June, my 6th in 13 months. That one clearly showed tumor shrinkage and definite necrosis, so all is well. My neurosurgeon wants me to have another MRI in December or January, then one per year, probably 'forever'. An hour a year? Hey, I can live with that. :)
Jim
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I'm SO glad I was able to go to the symposium in Philadelphia, as so many of my questions regarding options were answered. First of all, it seemed most of the neurosurgeons agreed that up to 2 mm you could usually (butnot always, depending on symptoms and location) do watch and wait, and that under 2 mm was the optimum for preserving hearing.
After hearing about the cyberknife, I was very intrigued. It seems to combine the benefits of FSR and the Gamma Knife. But since mine is 1.4 x 1.3 x 1.1 and I still have servicable hearing, I still have the luxury of waiting--who knows, something even better might be developed (or I might die of something else!)
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I want to thank everyone for the information that was giving to me. I will be going to the doctor on Thursday. I have not been feeling sick or anything. I still have the ringing in my hear, but that is it. I will know more when I see the doctor. Once again thank you for your information. I really need this board.
CWilson
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CWilson--
Be sure and update us on the size--2mm is the size of a tiny seed bead and probably wouldn't be found by symptomatic diagnosis. 2 cm is another story.
Best of luck, be well and sail on,
Capt Deb
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I think Mark is incorrect.
In good hands, recurrance after surgery is .3%(point 3) for small or medium sized tumors.(HEI data) It is even less with trans-lab approach. However, if it is YOUR recurrance, then it is 100% !!!
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Hi Chris, :)
Welcome to a good site for all kinds of information re acoustic neuromas.... sorry you had to join us but I hope your appt. went well today (it's thursday) and that you have some answers from that appt. to the questions you posed here..... as you can see, lots of folks have posted and it's good to have such support and sharing of experience and garnered knowledge.......Your An is small I see so I figure you will be able to have time for sure to find out what you want to know and time to make a decision as to what kind of treatment you will have.
I am kind of curious you know, as to how your An was discovered in the first place? Your size is one of the smallest I have heard about and i saw that you said the only symptom you have is tinnitus ( and, yeah, that can be a real nuisance as some of us know.) It might be helpful for others here to know what it was that then prompted your doc to test for an An in the first place? ( I assume you had an mri) and whether or not you had contrast too for example, to highlight the An if it should appear? Since mri's can vary from one machine to another etc. from what I have read around 2 mm, I am really interested in how you were diagnosed. Would that we all had early diagnosis.... many get it later when the An is bigger...good that you know early.......
Thanks so much for any light you could shed on this as I see a number here are wondering too.....
All the best, take care,
windsong
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Bruce and Mark.
Your stats may be accurate nationwide, but as I said, in good hands, eg: Stanford, HEI, other MAJOR centers, where hundreds are done yearly, the stats are much lower.
However , in my medical practice, I have a 110% recurrance rate!!! (just kidding!!)
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Bruce,
Thanks for the link. Explains a lot of things my surgeons did not. I'm glad we have very smart and knowledgeable people on this forum. Thanks for sharing.
Brendalu
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Hello Friends,
I went to the Dr. CY Joseph Chang out of Houston. I like him. This is my second Dr. and I feel good with him. I found my AN because I had hearing loss in my left hear, but my AN is on left side. Dr. Chang start me on steriod treatments to see if I can get my hearing back in my left hear. Since we have been going the treatment, my hearing has been improving. I said this because the hearing lost in my left ear does not have anything to do with AN on my rigth side. This is how they caught it so early. Dr. Chang will do another MRI in December to see if it is still there or not. If it is still there, I'm leaning toward radiosurgery. I'm eating right and taking care of my body and I really feel good. Can anybody give me information on this issue? I call you my friends because you know what I'm going through.
C-Wilson
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I was going to go with surgery and then changed my mind. I looked at GK and FSR. I also looked at CK, which sounds good, but did not know where was best to go for treatments. Surgery, for me, would have meant 100% loss of hearing in the affected ear. Radiation gives me the chance of retaining my hearing. With radiation or surgery, there is always a chance of regrowth. I had to make a choice so I went with (FSR) radiation because I wanted to keep what hearing I had. Only time will tell what the outcome will be. Hopefully more information will come out about CK (doctors/locations) for those who need to make a decision.
Lots of luck
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For C-Wilson, some links:
U. of Pittsburg, on radiation and comparisons to surgery:
http://www.acousticneuroma.neurosurgery.pitt.edu/index.html
House Clinic, on surgery, with some comparisions to radiation:
http://www.houseearclinic.com/pro_acousticneuroma.htm
CyberKnife at Seton Hospital in Austin, TX:
http://www.seton.net/medical_services_and_programs/neurosciences/brain_and_spine_center/cyberknife__stereotactic_radio_surgery/
GammaKnife in Houston, TX:
http://www.westhoustongamma.com/
AN Surgery at Baylor College of Medicine (nice set of 8 pics showing the steps of a trans-lab surgery):
http://www.bcm.edu/oto/cfbd/ansurgbw.html#
And for something to do if you are watching and waiting: :D
http://www.youtube.com/
Steve
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For Bruce and Sam, some comments on House vs. Radiation...
The stats at House on low long term regrowth are for translab surgeries, where the hearing nerve is removed as well. It makes sense to me that this would give the lowest rate of regrowth. For middle fossa or retro-sig, when an effort is made to preserve the hearing nerve, those same long term regrowth rates don't apply.
Although neither surgery or radiation can guarantee preservation of hearing, both have some good results for smaller tumors. From the posts by those with SSD, it is clear to me that even a little hearing on the AN side is worth trying to preserve, since it can give some stereo orientation information, even if it is not good enough for word recognition. I think it is worth it, even if it means accepting a somewhat higher chance of long term regrowth, since the chance of that is still pretty small.
When the probable outcome is a tie between surgery and radiation, I have to lean towards radiation because it less sudden trauma to go through and less invasive.
Steve
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Steve -
it's true that radiation is less invasive, but one of the reasons I chose surgery is that I wanted to know up front (as in postop) what my side-effects would be so I could deal with them and get on with my life. The way I understand it, with radiation it can take between 6 to 18 months for side-effects to even appear. Is this correct? or is it a misunderstanding on my part?
Thanks,
Jan
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Jan, I think it is true that the results of radiation generally unfold over a period that can be 6 months to 2 years. I agree, that is a drawback of radiation. To me it is a question of balancing how soon you find out, against what you find out. It seems to me that radiation has a better shot at preserving hearing overall, even if it does take some time to see what happens in your own case.
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Jan
I have to concur with Bruce....
In choosing my radiation treatment, I knew in advance (based on my research here, speaking to other radio-patients and what my dr's noted to me) the risks involved..... yes, things may crop up 3 mos, 6 mos or further down the road for radio-patients but based on advance research... if something did crop up, it didn't throw me off guard as I knew that these things could occur.
For me... I think the most difficult part about radio-treatment is the waiting game post-treatment. I commend all those that had radio-treatment for their mental strength to hang tough during the necrosis (tumor death) process as it takes a strong will and inner strength to go through the wait.
I commend you for being at peace with your choice... as we note here all the time... have faith in your choice, never look back, never question it... but most of all, know that we are cheering you on and will be here with hugs and support to help you through your recovery. Please have someone keep us updated post-treatment.... we truly are cheering you on.
Be well... and hang tough!
Phyl
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Phyl, Bruce & Steve -
I am totally at peace with my choice and have no doubts I made the right decision for me. I have been very fortunate to only have minor side-effects and my original question to Steve was just that - a question. I am not second-guessing my decision to have surgery. I personally would have not been comfortable with radiation or with watching and waiting, but that doesn't mean those options are not right for others. As I have stressed numerous times in other posts on this forum, personal choice is key in treatment.
Thanks for your responses,
Jan
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I would like to chime in here. As most of you know I had radiosurgery(linac) almost 3 years ago. I am one of the very rare patients who has experienced some really difficult side effects. That being said, knowing what I know today and what I know and have experienced firsthand , I would still never choose surgery. The longterm and very life altering side effects when tumors are difficult to remove or simply because "things just happen" in the OR gives way to a chain of events that can be difficult for both patient and family. Beleive me, I would love to have this tumor out of my head but I'd rather have it in there than have it removed. I thought the side effects that I had were bad but when I read about totalt hearing loss and facial nerve palsy and eyes that have to be weighted down, I want to cry for these people and I don't feel sorry for myself even though my path has been a diffcult and frustrating one, but I am doing much better and in fact much happier, even though it has taken almost 3 years to get here. I wish you the best.
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C-Wilson,
I see that you are going to a Dr Chang in Houston. I too have a very small 2mm AN and am seeking treatment in the Houston area. Where is he located?
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Bruce-
I'm confused reading the post...to whom did you respond to with the below post? In my opinion; you should try and give equal positive air time to all opions available to the people who post on this site.
"However, the idea that radio-treatment has protracted side effects, especially when it comes to hearing, and that microsurgery does not is simply not true. That is the point I was addressing, not your personal choice of treatment. Since many newbies and lurkers read these message boards, it is important that information be as accurate as possible."