ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: flier58 on September 11, 2006, 02:25:15 pm
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Hello everyone,
I am very new to this board as I've just been diagnosed with AN. Please be patient with me as English is my second language and my grammar can suffer under pressure.
I am 47 yo, F, living in Chicago. I had an MRI done recently due to slight numbness on the R side of my face (lips, right side of tongue). I have never before worried about occasional, slight loss of balance because we all trip every now and then. I cannot think about any significant bound of dizziness or loss of balance.
My MRI describes my AN as " 2cm/1.9/1.4 cm (AP,TV,CC).mass within the right cerebellopontine angle extendind into the right internal auditory canal. the mass is broad based with mass effect on the adjacent right brachium pontis. There is no abnormal hyperintense T2 or FLAIR signal within the parenchyma to suggest edema."
Well, I saw neurosurgeon here who did not quite explain to me why (besides the size of tumor) pretty much my only option is surgery (and soon) followe by G-knife. He was not very eager to discuss other options.
My issue is if my mass has to be "nuked" why not go all the way and "nuke" IT from the begining ie. proceede with radiosurgery.
Of course after 5 days of research ( and reading my MRI report) I would think about many question to ask (starting with whatever " the mass is broad based with mass effect on the adjacent right brachium pontis. There is no abnormal hyperintense T2 or FLAIR signal within the parenchyma to suggest edema." means).
Thanks to your postings I know that I have at least a little time to get 2nd opinion, but I wonder if anyone can suggest an MD in Chicago area that does not have an " almost God" attitude and can give me as unbiased answer as possible regarding microsurgery vs radiosurgery.
I am willling to travel to get this opinion if a good source is suggested.
I am a mom of a 3.5 yo boy and the quality of life is important to me because of him. My family lives abroad and don' t know about my situation. My husband is very supportive but he would be carrying dificult burden of attending to me and our son if something goes wrong.
I am scared but ready to fight.
So there it is, in a nutshell, my AN story. Any advice or answers will be appreciated.
P.S.
I already feel like I found support just by reading many of the posts.
Flier58
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Hi Flier and welcome! Your English was perfect and totally understandable.
As you have already been reading and lurking here for information, as you may have learned by now, you do have options based on your AN's current size. Please read carefully all of the info, but not to feel overwhelmed. As you can see, many (including myself) have felt rather overwelmed by our AN diagnosis' but know that life certainly does move on.
I cannot recommend specialists in your area, but please research carefully all types of treatment options, the experience of each team you meet with and your lifestyle (your young one, employment, your overall quality of life).
Know that we are here for you, as you can already see by reading on the forums... but most of all... remember, you are certainly not alone.
Welcome to you....
Phyllis
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I'm so glad you found this forum!
I can very much understand where you're coming from. I was diagnosed when my oldest was 3.5 and my youngest just 4 months. Having young children definitely adds another dimension to this diagnosis.
That said, you do have time to investigate your options. Originally, I was a "watch-and-wait" with MRIs every 6 months for monitoring. After my 3rd MRI, we confirmed that my AN is growing much faster than most and so needs to be dealt with (I'm going in for surgery this week). I can't say anything to docs in the midwest, but I'm sure others will. You'll also read that you can send copies of your MRIs to House Ear Institute in CA for a free phone consultation/recommendation. Historically, they only did surgeries but have just recently added the ability to do radiation (I'm sure someone else can provide more details). HEI is world-renowned for their AN experience - I'd definitely pursue them for another opinion if nothing else. Hopefully you can also find some docs experienced in treating ANs with radiosurgery to get their opinions.
But in the end, each of us makes the choice between surgery, radiation, and watch-and-wait for our own personal reasons. My advice is to take the time to do whatever research you need to so you can feel completely comfortable with your decision. Personally, I know that regardless of my outcome from surgery I won't second-guess my decisions because of all the painstaking effort I (and my family) put into making them.
Good luck, and I hope we see you around the forum!
Katie
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Hi Katie and Phyllis,
I did not expect such a prompt replay to my post. Thanks for your welcome and words of encouragement as my world collapsed in the last few days. I am slowly beginning to pick myself up although there are still difficult moments.
Katie, my thoughts will be with you on Sep. 13 and i hope to hear that eerything went just fine.
Regards,
Flier58
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Hello flier58 and welcome.ÂÂ
There are alot of people that post on this forum that are very versed in MRI reports and the terms the radiologists use. I am not one of them. I am sure the will post a reply to you soon.
What I do know is that your AN sounds well within the size range for radiation. Can your diagnosing doctor give you a radiologist referral?ÂÂ
My AN was touching the brainstem which made radiation not an option. I had surgery two years ago and I am just fine.ÂÂ
You might want to check out the teaching hospitals in the Chicago area. They ususally have AN specialists. Also chicagoear.com - it is an ear only institute and they usually offer surgery and radiation.
Good luck flier, write if you need anything. Kathy
ps: experience is everything when treating these things.......find someone that treats tons of them per year. your outcome depends on it.
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Hello Flier58,
I'm glad you found our site, it is so helpful in so many ways.
Your situation sounds a bit like mine, I've been researching since I discoved the tumor in May. Since then I've learned a lot, both by traveling to see doctors and my own research on the internet. The thing that seems most important regarding all doctors are that they are very experienced with AN's. I don't know of any in Chicago, but a city that large should the right experience there. I've been traveling to Barrow Neurological Institute in Phoenix.
I recommend that you research doctors that provide all the possible treatments, perhaps even multiple doctors of the same expertise. I had one neruosurgeon tell me surgery is the only way, and another say CK or GK would work fine. Its worth the extra time/research to make sure you make the right decision!
best wishes, melinda
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Goodmorning Flier58,
Boy, I bet you have a lot on your mind!! I guess by now you realize how important it is to get the best Dr. that you can. That really is step one. And you are very fortunate to have stumbled into this forum!! There is soooo much info about these tumors on thiis website.
Bless you and your little one. I hope you read and read. You really do sound like you are focused and looking for the right answers. We are here to help. So, just ask away!!
Have a good day
Pattibobatti
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Welcome to the board Flier. I'm not going to pretend to know what all of that MRI language means. I wonder if your doctor believes that it needs to be operated on quickly because of its location, or if he's just playing God. It's definitely a good idea to get a second opinion, even if that second doctor is a mere mortal. By talking to two or three doctors (and of course listening to the sage wisdom on this board), you should get a pretty clear picture of your situation and will be able to make a decision from there. It does seem very strange that they would be planning both surgery and radiation based on that one MRI... Best of luck.
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Hi Flyer! I am by no means an expert, but am four weeks post-surgery and am having Gamma Knife in a few weeks from now. I had several dr's tell me surgery alone was an option, but not Gamma Knife alone....my understanding is that with boith together, hopefully hearing, facial nerve, etc. can be perserved a little better than surgery alone. I was also told that anything under 3 cm can be treated using radiosurgery (like Gamma Knife) alone, so it sounds like MAYBE that could apply to you.
The one comment I wanted to make was that it does not sound like you are happy or comfortable with the dr. you consulted. Believe me, you will have a lot of interaction with this person, and in my opinion, you should at least respect, if not actaully like this person! I was very happy to have consulted with more than one neurosurgeon and hope you can do the same.
The other advice I might give is to spend a little time on these boards and try to read some of the comments others have posted, it can be very helpful.
Whatever you decide as far as treatment, best of luck to you!!
Martha
p.s. If you hadn't said English was your second language, I never would have guessed from your post - you write better than many native speakers do!!
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Just wanted everyone to know how important your support is to me even though this panel has such diverse opinions about treatment options and outcomes.
Thanks everyone for being there when it seems to be vey lonely,
Regards to all,
flier58
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Hi flier58,
Your description of your MRI sounds almost like mine. The first week of research since I was diagnosed with AN was the most painful mentally as with any decision process and it's about my head. Believe, once I found this forum and the CK (Cyberknife) forum, I started communicating with patients and doctors on the boards. I found their experience and opinions vary because it all depends on the situation. From the sound of yours since you don't have much symptoms, you may want to research the various options:
1. wait and see (but if the size is medium like yours, it may not be a good idea)
2. surgery (invasive and depending on where the tumor location, it may still need to be followed with radiosurgery)
3. radiosurgery (noninvasive such as GK and CK the 2 most popular ones)
Since not all medical professionals are unbiased due to their experience and other reasons, you do need to seek out someone who can be objective and up to date with all treatment options.
Since my tumor is almost the same size as yours and symptoms are mild, options #2 and 3 were my viable choices. I went to see a doctor at Stanford who has experience with both. Their recommendation is CK. This suggestion was then validated by another neurosurgeon in my home town (San Diego) without my prompting. Based on my comfort level and research with lots of input from everyone, I decided on CK and Stanford. At that time, my anxiety subsided tremendously. My result 6 weeks since treatment has been nothing but marvelous. You need to ask lots of questions until you are satisfied and comfortable with your decision. Everyone's case is different.
Your distract is normal and you will be fine. Think of othe worst cases and that we are so lucky to have this forum to help us through!
Best of luck,
Mary
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Hello flyer58.
Sorry to have you join the club. I'm new myself having been diagnosed 8/22. Just reading thru some of the blog here I ran across your story and delima. Part of which struck me is how to talk to a god (or doctor), and what is a brachium pontis with mass effect. I have that also.
Neurosurgeons are a strange breed, thinking very highly of themselves and not really wanting to spend time with their patients. They seen to just want to "cut" and run to the golf course. It is hard to know what to ask when they don't seen to want to take time to answer. What you need to do is ask for a lesson on neuro-anatomy, basicially 1)where is this thing, and 2)what further problens will it cause?
The cerebellopontine angle is that area where the brainstem connects to the brain. The term comes from the cerebellum and the Pons (brainstem). The brachium pontis is part of the Pons that your tumor is resting, (and growing) against. The mass effect is from the tumor is pushing against the brainstem and there isn't much room there for the brainstem to move.
Like I said, I have the same thinig and my surgeons have recommended surgical removal. I am scheduled in January.
I have some pictures from greys anatomy (the book, not the tv show) if you are interested. They show the brainstem and how it connects to the brain. In one of the pictures you can see all of the structures in the area of the cerebellopontine angle. Then you can discuss this with your doctor and come away with a better understanding of what is happening to you and why. Let me know if you want them and I will e-mail them to you. I haven't found out how to attach them on this forum.
At any rate, good luck with your information search and learning to speak doctor. Remember that it is their responsibility to help you understand what is happening. That is the only way you can give "informed consent" for any procedure. I hope things go well for you.
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Hello tcrnko,
Thanks so much for your explanation. AS you can imagine I have gone thru some anatomy books myself. I had couple more appointments and manged to ask more pertinent questions and get more understendable answers. I am leaning toward CK.
If you have a chance I would still appreciate an e-mail from you. If there is one good thing about IT - it's the connection that you can find with others in this predicament and their loved ones. I truly appreciate everyone's post it helped me combat a lot (not all)of anxiety and fear.
Regards to all,
Flier58/Andy's mom
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Hello Flier and all.
Thanks to tcrnko for the explantion.
I too have brainstem compression, and the neurosurgeon I saw was adament that surgery was the only way to go - because he said that having the radiation would be like taking a hammer to my brainstem :o Fortunantely, I saw many other doctors who didn't think the same, and I ended up having ck last week...
melinda
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hello Melinda,
Good to hear from you. I hope you are doing well. I may soon join you in the potsop group unless I change my mind about CK. I still have questions about the outcomes, radiation, postop complications, ability to manage complications once I am home in Chicago,
(I have an appt. with Dr. Chang sched. for Nov 3), how much worse will the symptoms be if tumor swells etc.etc.etc.
Well at least you have all these doubts behind you. I hope you will do great-call it selfish but it will make me feel better too :) ;);D!
Hugs,
Flier58/Andy's mom
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Hello flyer.
Good to hear back. Hope thinigs are going well for you. In order for me to send you the pictures I need an email address. yYou can send your address to me at nicholas.t.crnko@kp.org. This is my work mailbox. I work better from there than from home. At home I avoid my pc ofter and responses are slow. I'll put together some pics for you with notes as I can. Hope you are feeling better about your options.
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Hi, Mom of 3.5 yr old child. I am a grandma, age 64+. I will be 65 in December, one week after my first anniversary for AN treatment.
My tumor was described as a 2 cm X 1.5 X 1 mass extending into the cerebellopontine angle. My neuro showed me that the tumor was just "kissing" the brain. I am happy well and glad to have been left with a small bit of imbalance and loss of right sided hearing. My recovery was unremarkable.
I am writing to encourage you to go with your gut about treatment options. I do believe that both surgery and radiatiion have good points. What is the hardest part? Deciding which. I believe that your side effects from whichever treatment will be minimal due to the size and position of your tumor. My neuro was extrememly thorough about explaining my options. Then, I researched until I was tried of the worry over what to do. However, from the very day of MRI diagnosis my ENT and long known PCP wanted me to "to treatment now, don't wait". I believe, now, that their concern was for the possibility of rapid change in the tumor size. My PCP wanted surgery. My ENT recommended both options as equal, (his own aunt has radiation treatment at age 60 and came out happy). If my daugter or son ever had an AN, I might ask themn to consider radiation. It seems to have great possiblities for people. But, I had a gut feeling about the doctor I met, and that is why I chose surgery.
So, you see I think your decision has to be collaboration of your learning and your leaning. Either way, you are young, motivated to heal, and you have a life plan ahead of you. You will feel better once you've made your decision. One thing, don't go to the forum threads about complications for your particular treatment choice once you've made your decision.
You are going to be just fine. You will writing to someone else on this forum one year from today, and you will preparing to have a 5th year birthday for that child of yours.
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Hi Flyer,
Early welcome to the radiation group. You will find the Stanford team an awesome health care professionals. Dr. Chang and team truly care about their patients and very responsive. Say "Hi" to Dr. Chang for me when you see him. He will remember me as the one whose son had a candy bowl for him ;).
Hi tcrnko,
Curious why you are not considering radiation. With the new San Diego Cyberknife Center so close to you (I live in San Diego)... Is it because of KP insurance coverage? Good luck with your January surgery. When I had Kaiser years back, I was very happy with their service at Zion. They are a good bunch!
Mary
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Hello Mary, Boppie, tcrnko and everyone else on this board,
I just wanted you to know that you made me wash kitchen floor which I did not planned. You made me cry (again) with just gratitude for people like you. I've never met (and good chance never will) any of you but you still make time to make me and others feel better day after day. But to make me wash floor!!!!!!!
But seriously-I am so grateful that I found this board. I don't know what I would do without your support. I think I cried a tubfull of tears since my dx. but half of it are tears of gratitude.
Thanks,
Flier58/Andy's mom
PS
tcrnko, I will e-mail you later beacuse I have to run to pick up Andy.
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My dearest flyer,
You remind me of all the tears I shed between dx and treatment. Believe me, once you have your decision and treatment, you will be so relieved. I know that's how I felt. Now, I have a new attitude and people at work like the "new" Mary!
Don't scrub that floor too much. It will get dirty anyway. My 8-year old spilled orange juice this morning and he cleaned it up before I even woke up. That was reward enough for this mom :D !!
Mary
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Dear Flier58,
I am a 52 y.o. male living in Chicago suburbs and was diagnosed April of this year. I went to my ENT with symptoms of fullness in my right ear, loud ringing/buzzing in my ears, distorted hearing in my right ear and frequent headaches. Ater a hearing test that indicated one sided hearing loss he told me to have an MRI with/without contrast, the results of which showed that I had a 9 millimeter AN.
I was referred to "two of the top neuro-otologists in Chicago" according to my ENT.
Dr. Wiet, who is on the ANA board of advisors and Dr. Leonetti. Wiet is affiliated with the Ear Institute of Chicago. www.chicagoear.com
Lianetti is affilitated with Loyola. Both are surgeons. I went to see Dr. Wiet after my initial diagnosis. He wanted to know how much I knew about the condition and what was my preference of the three classic responses to AN. I told him "Watch and Wait" and if in the future I chose treatement, I would prefer radiation. He said his partner Dr. Battista was the person to see if I was considering radiation, so I have seen Dr. Battista who is following my progress in the Watch and Wait mode.
I just got the results of my six month MRI. My AN has "grown" by two millimeters. Still relatively small. I will wait another 6 months and have another MRI. My current state of mind is that the symptoms I currently have(namedabove) will likely not get any better after surgery or radiation. In fact, they could get worse. Add to that the possibility of facial paralysis, total one sided hearing loss, and CSF leak with debilitating headaches. What is the advantage of treatment? I am having a hard time seeing it. I read somewhere on another site that many AN's grow minimally after initial diagnosis. Some 30 to 40% of people diagnosed experience
no further growth of the AN. That sounds like it is worth watching and waiting unless the AN is so large and positioned in such a way as to render you with no option but surgery.
Also, check out Leonard J. Cerullo, M.D. at www.neuro-ortho.org
you will make the right choice
chuck