ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Pajamas on September 27, 2012, 11:30:36 pm
As the signature in my profile denotes, I am a 32 year old female diagnosed by a neurologist about one week ago with an AN, 10mm x 5mm x 6mm.
Today was my first consultation with a doctor who ONLY does radiotherapy via Gamma Knife. First he told me that radiation was my only and obvious option. His words were, "no brainer." Let me make this short when I say that he was very condescending and seemed irritated by my "good questions."
Next, he told me that headaches and debilitating vertigo are not normal symptoms of AN and that I might just have an inflamed vestibular nerve. He said that the fact that I only have vertigo but don't have noticeable hearing loss or tinnitus is what makes my case seem odd. I asked him if that is what my MRI told him and he said he wasn't sure. AND, talk about surgeons pitching you their specialty!? He was going on and on about how, "You're a good looking woman, WHY would you want permanent facial paralysis?" and "You can come in the morning to have your radiation, leave later than morning, then go out dancing the same night!" When we asked him whether or not he would do the surgery, if that's what I decided to do, he said, "Oh, no...I haven't done one of those in years!"
Later both of my parents confessed that they noticed there was something wrong with his right hand. I feel kind of bad for him.
Anyway the thing is, he wasn't listening to the fact that I have DEBILITATING vertigo and I can't even leave my house for long periods of time. I go to UC Irvine and I have a job. I am unable to attend school or work in the office. Vertigo is so gross and I can not function if I have an episode in public. (on the floor, nausea, diarrhea, profuse sweating, for hours at a time!)
He then prescribed me a Medrol Dosepak of steroids and told me that if it WAS a vestibular inflammation, my symptoms of severe dizziness and vertigo would subside in three days.
First, has anyone ever had this happen to them or heard of this happening? Is it typical for a neurosurgeon to mistake an inflamed vestibular nerve for an AN or vice versa? If so, do surgeons ever realize in the middle of surgery that there's no tumor at all but simply an inflamed nerve?
Oyeeee, obviously I have started taking the steroids because, well wouldn't that be nice? To NOT have a brain tumor after all? Sheesh! If I thought I was confused before....
FYI, this is not my only consult as I have another coming up this Tuesday at UCLA with the highly esteemed, Dr. John Frazee.
Has anyone here heard of him or know anyone who's been treated by him? Apparently he is an expert in the much less invasive procedure of endoscopic removal. (which yes, I know also has downsides dammnit!)
Thanks for reading and I thank you in advance for any responses and guidance you may give...I hope I don't sound TOO worked up!
Hi Pajamas and welcome to this forum .....
Well, this is a new one ..... Never heard of an AN being mistaken for an "inflamed vestibular nerve." Radiologists read MRIs and if it was read as a tumor ......
Question/comment: you are right in the neighborhood of one of the most highly respected AN treatment facilities in the world ..... why don't you make an appointment at House Ear Clinic in Los Angeles for an evaluation? Actually, a doctor there will give a free consultation if you send them your MRI CD and most recent audiogram (if you have one). See: http://www.houseearclinic.com/consultation/acousticneuroma
My regrown AN was removed by Drs. Rick Friedman and Marc Schwartz at House 16 months ago and I have had an uneventful recovery with no facial paralysis whatsoever! I am SSD (single side deaf) but doing well with a bone-anchored hearing device.
Thanks for the warm welcome and for the advice.
I know...after all of my research I've never seen someone get sent home on a pack of steroids for an inflamed nerve rather than an AN. He mentioned that since my tumor was tic-tac shaped but bigger, that there was a good chance it's JUST the nerve. When I look around on here, many people have had similar shapes to their tumors.
Anyway, I haven't gone to House Ear Clinic or SBI because I hadn't heard much about them until I spent six hours reading all of the things on this message board about them. I may try to make an appointment after my consult with UCLA. I had a LOT of people behind me working to get me this appointment there, a favor was called in to MDVIP by a family member to help me locate a surgeon and get in for an appointment asap.
I am just REALLY hoping to have this tumor (errr...maybe tumor) removed asap because I graduate in June and if I miss this whole quarter of school...I won't graduate on time. At this point I can't go to class because I'm always dizzy, but then have these unpredictable vertigo attacks which many of us know are debilitating. I know that I need to research and find the perfect doctor and the perfect procedure for me but I feel so stressed due to my timeline.
Again, thank you so much for the suggestion for House and for replying to my weird situation. It feels great to talk to others!
Yikes. That sounds crazy! I would NOT like a doctor basically giving me only one option. And, I don't know if the doctors that I have seen are anti radiation or something...but one of them pretty much told me that because of my age (27 - close to yours!) that radiation wouldn't be a good option. He said that long term radiation studies haven't been done well enough to know it's safe...he even said there is a possibility of radiation actually causing cancer one day way down the line...and that radiation is usually only used on older individuals with ANs... Therefore, I've pretty much crossed radiation off my list of possibilities at all.
I've only had vertigo once...and it was NOT fun...so I can only imagine what you're going through. I'm so sorry! I hope you feel better soon, and I really hope you get some answers. I think that's the worst part... the unknown. I'm in a similar situation of the unknown, and it can be stressful.
I haven't sent my scans to House yet, but from what I read on here, they are amazing. So, definitely consider that. I know I am, and I'm all the way across the country in NH.
Good luck, and you'll be in my thoughts!
Hi again, J .....
Your AN (or whatever :)) is relatively small so you should take your time getting opinions and then you will know in your gut what is right for you.
Just wanted to mention that I flew all the way across the United States to have my surgery done at House ..... it was that important to me to have the most experienced physicians in weird AN situations. (Mine was weird because they think it was caused by massive doses of ionizing radiation to my head when I was a kid ..... and then it grew back after the first "removal," which is extremely rare.)
Many thoughts and prayers.
Yes, that is what most of my findings tell me about radiation. Most young and physically fit patients tend to opt for surgical removal. Thank you for your reply, it sort of gives me some reassurance.
I think I will definitely call over to House. The more I read about them the more I become intrigued.
Again, the reason why I feel like I'm rushed to make a decision and find a doctor is because of my severe symptoms which keep me bound to my home. I am unable to attend work but more importantly, I am unable to attend school.
I'm obviously a non-traditional student who returned full-time to earn my bachelor's degree. I've worked REALLY hard for this the past few years and I will be devastated if I don't graduate in June.
Anyway, you've all been helpful and your suggestions/advice are so very welcome. I am grateful that a forum for AN patients exist!
I would suggest finding a different doctor. There are far too many respectful, thoughtful and considerate neurosurgeons (both cutters and zappers) out there to waste your time on someone like your first consult. I've met a ton of them in the past year. Your comfort is important in this, so listen to your instincts and find someone else.
Doing a consult at House is the ACTUAL no-brainer here, especially because you're so close. You could also consider Stanford or traveling farther for treatment if your insurance allows it.
Vertigo and the like are indeed common symptoms for people with ANs, but I haven't yet heard of someone mistaking a tumor for an inflamed nerve. Even if you schedule surgery, they should take another MRI right before surgery... if no tumor shows up, that should result in a red-light where everyone stops and questions where they're going in your treatment.
Finally, as someone who's close to your age but who also teaches undergrads for a living, I'll say this. I know the urge is to place a lot of importance on finishing school NOW (especially since you've been waiting a while to get your degree), but your health is really important. Take the requisite time to deal with this and try not to get too down if it turns out you can't finish. Life -- the full catastrophe of it -- happens to people sometimes, and sometimes you can only fully devote yourself to one thing. If that thing is your health, devote yourself to it and don't look back. You will be able to finish school after taking care of a tumor like this.
Best of luck, and feel free to ask any questions as they arise.
Hi pajamas and welcome
I have to agree with Sean that it is most important at this point to take care of this tumor that has so impacted your quality of life,,,nothing is more important than your health,, and although you think graduating on time is imperative ,, this AN , if that is indeed what it is, will have it's own way of "rearranging " your life much as it is now with hindering you from work and class. So step back long enough to find a good doctor that you are confident in and that treates you with the respect you deserve!
To both you and Mary ,, you can send your MRI CDs to House clinic for the free phone consult without obligation to be treated there,,,that is an excellent service they provide us ANers ,and enables you to obtain second opinions and more advice,, I did and did not have my surgery there; however the info I obtained was invaluable ..
I hope you like this Dr Frazee Tuesday, I have not heard of him on here but that doesn't mean no one has used him,, I also have not heard of anyone who has had an AN removed endoscopically,,,,be sure and let us know what he says about that,,,
I wish you the best in your journey and research concerning your tumor,,, small ones can give you more symptoms and problems than larger ones so I sympathize with you.. I also did not have the vertigo attacks,, just dizzy spells and terrible headaches,,, you will find that location of the tumor can be just as important as the size,, good luck to you and keep us updated as we care,,,,Jane
Personally, I'd start over with a neurotologist.
Sighhhhh. Yes, I agree with all of you and completely understand that my health is number one. I guess it's just hard to deal with all of this when I have so much at stake. But, we all do and that is why I am happy to hear your opinions.
OK, just for good measure (I know that most of us on here are not doctors but) what do you think? Baby tumor or inflamed nerve?
As you say, most of us on here are not doctors (I'm definitely not); I wouldn't even speculate.
Best to leave the diagnosing to the medical professionals ;D
I agree with Jan ..... best not to second guess an MRI ..... there are so many "normal white or black blobs" on an MRI, only a professional can possibly interpret them. Even then, there is always the potential for slight differences of opinion among the professionals.
Let us know what your other opinions say.
My very first AN in 2001 said on the MRI, AN versus neuronitis. So I did not know till my visit to Iowa City to the neurotologist and his walking in the exam room and just talking about my tumor. Made for a scary fall 11 years ago as waited till past harvest time for my choice to have surgery. I have never regreted my choice to see one dr and go ahead with surgery. Hard to think it's been 11 yrs and back then not know what was going to keep on happening over time with NF2 making for more scary times. I am so grateful to have turned out as well as I have, even with my annoyances. Cheryl R
Thanks for all of the input everyone. I will definitely keep you posted.
My two cents... I was diagnosed with an AN April 2011. Went to House and SBI, both wanted to do surgery sooner than later, House recommended radiation too. My symptoms were hearing loss, no vertigo to speak of, occasional dizziness.
I went a different route... I went to acupuncturists who likened the acoustic neuroma to a swollen nerve. Swollen nerve had a much nicer sound than tumor. Long story short I did intensive acupuncture for 3 months and went of an anti-inflammatory diet (still on the anti-inflammatory diet). I had a second MRI 3 months after diagnosis (July 2011) to determine the rate of growth (VERY IMPORTANT!). The 3 month MRI revealed a "stable tumor, no growth". This was good news. I started taking supplements and did my own thing from obsessive reading on the internet.
MRI in February 2012 suggested a reduction of the tumor by 5mm. I'll have my next MRI in October to see what is happening now. So far (knock on wood) my hearing remains unchanged and I have no other symptoms. Fingers and everything else crossed that's the way things stay.
Hope this is helpful. Determining the rate of growth is very, very important.
I agree with several of the posts above to do a consultation with HEI. The research supports receiving treatment from surgeons with the most experience with these particular tumors. Please keep us updated.
Dr. Frazee at UCLA took one look at my scan and was 100% certain that I had an AN. I mentioned the proposed "vestibular inflammation" by the other doctor I saw (Dr. Duma at Hoag) and he was thoroughly baffled by that diagnosis.
Anyway, it's been awhile since I've been here but you know, I've been riding a roller coaster. Dr. Frazee DID agree that my presenting symptoms were not the typical AN symptoms and that it could be possible that I was experiencing this dizziness and vertigo because of something else. He didn't want to just cut my head open to remove the AN asap if it was necessary to find another culprit. Obviously, the AN would have to be dealt with at some point but not so urgently if my symptoms were from MAV for instance, or even Meneiers disease (though even more rare for someone my age).
Long story short, I did the hearing test, the balance test, the medications for someone who would have MAV and the conclusive answer is that the AN is causing my symptoms! That little biotch knocked me into a wall the other day and left me with an egg sized bruise on my head.
My hearing in the right ear is at the highest end of the normal range and the hearing in my left ear is at the lowest end of the normal range. Therefore, not much hearing loss and technically normal!
My balance test confirmed a severely weakened left vestibular system.
The medication they gave me to try (in case I had MAV) did absolutely nothing, therefore proving MAV was not the issue.
So, my retrosigmoid endoscopic resection is scheduled at UCLA for November 2, 2012. Can't wait to get this "mutha" out!
It is scary what can happen when we go to doctors who do not specialize in these tumors, especially when they don't recognize they need to refer us to doctors who do. My thoughts will be with you through surgery. Please keep us updated.
Wonderful! I'm glad you got a second opinion and some testing that made sense. (That's why doctors should do these tests and not dismiss symptoms!) I had a similar experience with testing. My hearing was normal, my balance was normal, but when I got a test that measured the time it took for signals to pass through my cranial nerves -- lo and behold, the tumor showed up clear as day. The right test makes all the difference.
Good luck in the run-up to your surgery. Take as much time as you can for yourself. If you don't know what to expect at the hospital, solicit opinions and advice (take earplugs and a sleeping mask!). Also, let us know how your procedure goes -- there's a discussion going about endoscopic procedures already in another part of the forums, so I'm sure people will be interested.