ANA Discussion Forum
General Category => AN Issues => Topic started by: Sobes on October 24, 2009, 06:34:07 pm
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Hello everyone, my name is Brenda and I was just diagnosed Thursday evening with an 8 mm AN. I had gone in with SOB and other "flu like" symptoms and ended up divulging other issues I'd been having for quite some time. It was then that the ER Dr. had me do some basic walking exercises, etc. She did an MRI/MRA and there it was! For the longest time I thought I was losing my mind because of the symptoms: dizziness, ringing in my left ear (that no one else was hearing), intermittent numbness on the left side of my face and forehead, and more recently, balance issues. Although no one wants to hear this kind of news I was glad that it wasn't just my imagination! I saw the neurosurgeon the following day in his office where I was told that I had too many symptoms for it to be related to the tumor. I was once again second guessing my sanity:(He says I need to see an ENT to rule out middle ear issues???? I left his office feeling confused and alone. I would like to go to a different Dr. to get another opinion. I am not against seeing an ENT...but I also know that this thing is in my head and feel like I want it out NOW. I believe his words were something to this effect- " Oh, that little thing...you have too many symptoms for it to be that". It was awful. Perhaps I do....but now I feel more confused. I live in WI and would love to have some Dr. recommendations! My husband and I will travel. I don't know if all of my symptoms are from the AN, but I am almost certain that most of them are. Sorry for going on and on. Thank you for reading and I hope to get to know many of you and hear/read your stories as well. Brenda
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Hi Brenda, I'm sorry about your frustrations with the doctor. I had those same symptoms for over four years before the correct diagnosis was made. The symptoms were definitely related to the tumor. I don't know where you are in Wisconsin, but you said you would travel. I can highly recommend Dr. Bruce Gantz from the University of Iowa Hospitals and
Clinics in Iowa City. He is one of the top specialists in the country for this type of surgery. You might want to give him a call.
Good luck and keep us posted.
SUE
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Thank you so much Sue! This site has been such a blessing already and I've only been a member for about an hour! lol;)... It sounds like your Dr's were wonderful. It's been just over a year since your surgery according to your post. How are you doing and how was your recovery? I am unfamiliar with the kind of surgery you had. Would you mind enlightening me?
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Brenda, sorry to hear of your AN diagnosis. Right now is a scary time to hear you have this. You can see an ENT but most do not have great knowledge of ANs. One can inform you of someone to see with AN experience. This would be a neurotologist or a neurosurgeon. I do know there are some who have had surgery in Milwaukee. Also in Madison. I am also an Iowan with surgery at Univ of Iowa and know Dr Gantz is a very experienced neurotologist. Your tumor is small in spite of the many symptoms but you do have time to figure out what is best for you. Tumor location can be a big part of what symptoms you have even if it small. This is also a surgery where we all vary in how it goes. The hearing loss, balance and length of recovery can vary a great deal with most getting back to a normal life in time. You will get more info in time which will be of help to learn about all this. Cheryl R
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Hi Brenda, welcome to our family
So sorry that you have been given this diagnosis, but do remember it is a benign tumor, and there are many options available to you because of the size being 8mm. In the AN world that is considered small however, it is the location of the tumor that is very important. Some AN tumors, usually larger ones can be compressing the brain stem which would require more immediate attention. You need to learn more about your particular case, so that you can decide what option you choose for your treatment. You should have available to you all the treatment options, but it's up to you to investigate those options and decide what you are most comfortable with.
Again, welcome others will share their knowledge with you, we are one big family and are here to help. Blessings to you,
Jackie
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Hi, Brenda,
Your AN is considered small and as such, you have all three options (watch/wait, radiosurgery, surgery) and you have time on your side. It is very important that you research all your options, see several doctors, keep doing this until you find the doctor who makes you feel right and your gut tells you right time/right procedure/right doctor. It will happen and it takes times to process all of this. As yours is small, you have this time.
In terms of symptoms, there is an expression used on the forum called "smal but mighty" I am not a medical doctor, but it really depends on the location of your tumor in terms of how many symptoms you have. There have been people on this forum whose ANs are really large, and they have had no symptoms until they need emergency surgery. Then, there are people with small ANs who have lots of symptoms. I was one of the small ones. Quite small - only 5mm. But I had a lot of symptoms because mine was as far back as you could go, right up against the cochlea in the Inner Auditory Canal. So it was in the narrowest part, all the nerves are bundled there, and I had symptoms. My hearing was dropping 15-20 dcb a month.
You should also make sure you see a neurontologist who is an ENT who specializes in neurosurgery and a neurosurgeon. Most times, these two doctors do surgery for AN in tandem. The neurontologist is going to give you the lowdown on your AN and I would bet that he is not going to say your symptoms are not related as they are classic AN symptoms. Search on the forum also for doctors. Check out the watch and wait section and the radiosurgery section. There is no right answer on how to proceed here, there are risks to all choices, and there IS a right answer for you, personally, and you will find it once you have explored your options.
Hang tight and keep reading...you are in the right place...there is a wealth of experience and information on this forum. This is a scary time for you so you just need to breathe and take it in little by little. Please keep us posted on your progress as this part of the AN journey is very stressful.
Cheryl
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Hi Brenda,
I would like to echo Cheryl's comments. My AN is very similar to hers, 5 mm, pressed up against the cochlea, and like her, I have the same symptoms you describe. I think your intuitive sense to get another doctor's opinion is spot on. It sounds as if this doctor's experience with acoustic neuromas is limited. Symptoms can vary greatly from person to person, but my symptoms are the same as yours, and I'm certain they are caused by the tumor pressing against the balance, hearing and facial nerves.
As for feeling confused and alone, you're in the right place. This forum has answered so many questions for me and you will find that night or day, you aren't alone in this. All of us know what you're going through and are here to help however we can.
Tammy
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Hi Brenda and Tammy (not to hijack your thread Brenda but I saw that Tammy is new also),
I'm sorry that either of you need to be here, but you will get truthful answers, from the most compasionate people you can imagine.
Like the others have said, you've come to the right place, and after all your research you will know what to do.
This is indeed a scary time, however you will get through it.
I just wanted to welcome you both to the family :)
Rich & Scarlett
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Thank you everyone for your words of encouragement. I am also fighting the flu at the moment (it has hit hard) and probably won't be on the site too much this weekend as I need to get recovered and continue to research. I am not entirely sure how to use all aspects of this site yet, but will get there. I will continue to post as we learn more. There are so many questions. How many treatments of radiation does it take and does it require a hospital stay? Does it require any time off from work? How much time is required to be off work for surgery? I haven't had the chance to read all the posts here and am sure these questions are answered elsewhere. I will be back more upon feeling better. Thank you again to all who responded with information and kind and encouraging words. It means so much. Please forgive me for not responding to each of you individually:( Brenda
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Hi Brenda. I see you have a small AN. The good thing is that it is small. Sometimes they still can be very pesky depending on alot of things like location. It looks like you`ll have some time to figure out what you can do to alliviate the problem. In the meantime try to function as normal as you can. With todays modern technology there is a most certain outllook to getting back to normal as possible whatever your choice. Feel better and best wishes, Mickey
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Brenda,
I'm a newbie here as well after nine weeks post op after having an AN removed in a life-threatening emergency room visit manner. I had no symptoms and no choices to make. This forum has a wealth of information and I encourage you to navigate your way around. I'm not sure I've mastered it yet. There are also local ANA offices in Wisconsin, I'm sure. I've just contacted mine here in Michigan yesterday. Good luck with all that you research and wishing you the best to find what's right for you! God Bless.
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Hi, Brenda! Welcome! Sorry you have the flu (and an AN)...
To answer your question about how much work you would miss after radiation treatment, folks who have radiation generally don't miss any work other than the time for the procedure itself. I even think one or two around here went on in to work the afternoon after treatment. It does not require a stay in the hospital. The number of treatments you have, depends upon which of the radiation types you choose (GammaKnife or CyberKnife, usually). GK is 1 treatment, CK is typically 3 treatments, there is yet another type that may require more. There are sometimes some uncomfortable symptoms which arise 4 - 6 months down the rode due to some swelling, but that is generally not too bad from what I've heard. I'm sure some of the radiosurgery folks will be along to give you a better feel for the impact it had on their lives, and probably a much better medical description of it than I did, though.
As far as return to work after surgical treatment of AN's, well, that varies quite a bit from person to person. However, in general, again, most need at least 6 weeks, give or take. There are folks here who went back to work at 4 weeks and others who struggled to get back at 3 months or so. Unfortunately, it just depends...and it varies...how's that for an answer?
I encourage you to contact the ANA office to send you information, if you haven't done so already. Hope you feel better next week ;D
Cindy
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Hi Brenda and welcome.
I'm also sorry to hear that you have an AN and the flu. The neurosurgeon you saw is obviously not well versed in symptoms of an AN (not all of them are). As others have said, the location of the AN, as well as the size determine the symptoms. Since your AN is small, you have the option of having stereotactic radiosurgery or microsurgery, or of course watching and waiting (having periodic MRIs to see if it's growing) if you choose not to have it treated at this time. Radiosurgery in and of itself doesn't require you to take off any time other than the day(s) you go for treatment. How much time you'd take off really depends on how you feel. Gamma Knife is done in one session and the number of sessions for Cyberknife or other such procedures is determined by the doctors treating you, but are usually between 3 and five sessions I think. The recovery from microsurgery is as individual as each patient. Most people do take at least six weeks off from work, but some take as little as two, and some people require more lengthy recovery periods.
I am not a doctor, but in my opinion you should see at least a couple neurotologists (an otolaryngologist/ENT who specializes in neurotology and skull based surgery) as well as radiation oncologists to get ther advice andropinions, unless you are already certain you of how would like to treat or not treat your AN.
Please know that you are not alone, and we are here to help in any way we can.
Wendy
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Brenda, you are NOT CRAZY!!! I was just diagnosed with a 9mm x 6mm acoustic neuroma on October 15th. Many of my symptoms nearly mirror yours, and the others you mention are very "textbook" for this type of tumor. My tumor is considered small, and I have very, very severe dizziness and vertigo. At times I will nearly fall over when walking. If you are crazy, then they better lock me up right along with you. :D
My family thought I was being a hypochondriac or just dramatic when I went to the doctor for my symptoms. When you tell someone you are "dizzy" that can be a very subjective term. Only you know what you are truly feeling, and you know best what is going on in your own body.
Also, I am also right there with you doing early research. It can be overwhelming and I still feel like I have a long way to go. Try not to let it upset you too much. There are a lot of scary stories and frightening statistics out there, but there are also a lot of very positive things and success stories. We will get through this!!! Please PM me if you need links to a few positive sites or just someone to listen to you blow off steam.
Lyn
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Hi Brenda and welcome!
You have already received some great advice and answers to some of your questions. I definitely agree that you should find another Dr. that you feel more comfortable with - & certainly more sympathetic to your symptoms. As I have said before, that "gut feeling" (which I personally believe is a little nudge from the Holy Spirit) has a LOT of merit and when you find that, you will know. There are a lot of Dr.'s out there and a LOT that are really good - you want someone with a lot of experience in removing these. Many Dr's do have this experience all over the country (& world) but I don't think anyone has mentioned the House Ear Institute in LA. I didn't go there, but have heard really good things about them. I do know that they will look at your MRI for free and one of the Dr.'s will call you. I would recommend at least using this free service for another opinion! If you have a good, experienced Dr. in your backyard, there is no reason not to use them, but if you are going to have to travel anyway, you might consider HEI.
Hope you get to feeling better soon!
K ;D
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Welcome, Brenda! I too am not sure where you are in Wisconsin, but you might want to consider Mayo Clinic in Rochester, MN, for a close second opinion. I had gamma knife 3-1/2 years ago there and now just also had my surgery there. Dr. Michael Link was my neurosurgeon and Dr. Colin Driscoll my ENT. They work as a team and I had excellent surgical results.
In any case, I do think you need a second opinion, as your symptoms are very familiar to so many of us! Please keep us posted on how things go for you, and I think you'll find this forum a great resource!
Denise
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Hello and welcome, Brenda ~
I think that most of us can understand your feelings of frustration. I had a fantastic neurosurgeon (and an excellent surgery outcome) but he is located in New Haven, Connecticut and not very convenient, even for someone willing to travel. I'm sure you'll find a caring and competent doctor with AN experience - which is what you really need - much closer to home. You've already received some excellent 'leads' and suggestions. Meanwhile, consider these forums a resource and feel free to ask questions and post comments whenever you wish. You're a part of the 'family', now. :)
Jim
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Brenda - sorry about your discovery, but it really is the "best case scenario." Time is on your side so don't feel rushed to make a decision. Best of luck and feel free to ask questions, make comments and, if necessary, to vent a little!
- Dennis
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Hi Brenda -
welcome to the Forum; you'll find a lot of help and support here.
I'm in Illinois (outside of Chicago) and have an amazing neurotologist who treats ANs through surgery and radiation (Gamma Knife). So, if you are interested in talking to a doc who can offer you both treatment options, has a great bedside manner, and really knows his "stuff" - let me know.
You can PM or email me through this forum. You'll also find my name - and the names of others - on the WTT (willing to talk) list that the ANA will send you along with some informational literature on AN's (VERY helpful) if you just ask them.
Good luck,
Jan
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Hi Brenda, sorry about your diagnosis, but I think you will find this forum a very informative and friendly place. People here are so willing to help and support you, so feel free to share all your concerns. Good luck!
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Hi & Welcome to the site!
Yes, your tumor is smaller (like mine), But YES, can cause many of those symptoms based on where it is located exactly....just like previous posts have said.
For a start, maybe you could try find a NEUROTOLOGIST in Wi., otherwise a neurosurgeon who specializes in the skull/brain. You may even be able to just get names from a local ENT.
Be sure to utilize the SEARCH section above too!
Best wishes
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Hi Brenda,
Welcome to the AN family, you will find a heap of caring folks with a heap of knowledge only too willing to aid and supportyou in your journey.
You will find that everybody has different symptoms at the start, many get to the serious stage without anyl, while some have them all
As has been mentioned before you have discovered yours early have time on your side to do the research and find somebody you will comfotable with.
Keep the chin up, and take a deep breath, we are all with you.
Regards
Don
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Hi. Welcome from me also!
Yeah, I think you need to see somebody well versed in AN's. It's all about location, location, location. Small AN's have proven to be quite a problem for some people. Other people's AN's grow to big, fat things before they ever have any symptoms. Mine was right in the middle. Anyway, find a good doctor who knows what he is talking about who can give you well balanced information on all of your options!! Best of luck to you.
Sue in Vancouver, USA
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Hello again everyone,
Just wanted to give an update:
I met with the ENT yesterday and it went better than I had expected. He did not make light of my symptoms and agreed that most of them are indeed from the tumor. When I asked him how many of these he sees he said "maybe 2 a year". He also told me that if any Dr told me to watch and wait that I should seek another opinion. He then proceeded to give us names of Doc's who treat patients with ANs often (3-5 days a week). He mentioned HEI and a few other renowned places and said if we don't want to travel that far that there are some great Doc's in the Milwaukee, WI area also. He wants me to see an oncologist here in Green Bay that does Gamma Knife to get the low-down on radiation treatments. I told him that I would really like to have this thing out of my head and he said that he would be happy to give me a referral to any of the Doc's who are experienced with AN surgery! Finally someone who gets it! Oh, and the hearing test showed no hearing loss!!!!! yaaaaaaaay! ;D
My hubby and I are both sick at the moment (he's even staying home from work which I haven't witnessed in 12 years) so I haven't been able to read all of your posts yet but am hoping to get the chance very soon. Thanks again for all the wonderful support and information here!! <3
Bren
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Bren ~
Thanks for the update. I'm pleased to learn that your consult was productive. I would certainly encourage you to seek out doctors who are well-experienced in AN surgery. My neurosurgeon had been performing AN removal surgery for the better part of 30 years. He was confident but compassionate and proved to be an excellent surgeon. Radiation also requires a doctor experienced with acoustic neuroma treatment. Such doctors are usually available and sometimes, their reputations proceed them, as happened in my case. The news about your hearing being stable is wonderful!
I'm sorry about the illness in your family and hope you and your husband can recover quickly and you can get on with your necessary research and planning for your 'assault' on your AN.
Jim
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Brenda
My AN was 5mm when discovered. It is now 6.5mm. I have pains around my ear and back of my head. I don't really have dizziness but there are times when I turn around quickly that I feel I have to reach out and grab something to be steady. I also already have a 60% loss of hearing in my ear. Just because it is small doesn't mean it is not messing with your world.
I agree with the other replies that you need to go to a specialist. My OB/Gyn originally sent me to a local ENT after I did the same thing you did.....told him I was going crazy. After my MRI and the diagnosis he immediately referred me to the Neurosensory Department of Baylor College of Medicine in Houston (Dr. Vrabec). I live in Texas. He said that he was not trained to handle an AN.
I am in the process of deciding whether I will have surgery or radiosurgery. Unfortunately it will get more stressful for you before it gets better. I did watch and wait for 6 months and just had a 2nd MRI, which showed my AN was growing. I was on pins and needles the entire 6 months.
Marsha
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Hi Bren
I'm glad to hear that you found someone who does get it and is wlling to offer guidance. The decision makinig process on how to treat your AN is the most difficult part of this journey, in my opinion. Get as many opinions as you need regarding surgery and radiosurgery to feel comfortable with your choice. Once you've done that, it gets easier and you will probably feel more at peace with the situation. Hang in there and keep us posted.
Best wishes,
Wendy
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Hello Brenday, I wanted to welcome you to the forum as well. I hope you guys get over the flu soon, always not a good thing to fight :(. I just wanted to echo everyone's comments and to trust your gut when it comes time to make a decision on what to do. Also, I have found out it is possible to do TOO much research/reading about AN, so it's always a good thing to step away from the computer for a day or two. In your case, I wouldn't recommend getting a flu again just so you can stay off the computer! :)
Jay