ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: neetze1 on January 01, 2013, 11:54:42 pm
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Hello,
I learned on Friday that I have an AN. I learned of this over the phone late Friday evening by my ENT. He advised me to go on line and learn what I could. I have a follow up appt on the 8th. I had requested the MRI report and while I dont understand most of it, it lists the size as 24 mm x 34mm. I have been reading this site and have learned that I am past the watch and wait phase. I am scared and am not sure what I am going to do next. I have not informed my extended family yet (only my two grown children) my friends or coworkers. I dont have any answers to the questions I will be asked. I am also too emotional to talk right now. I assume I will be going to Philadelphia for a consult however, I am not seeing too many posts about my options there. Can anyone offer any advice about Jefferson? I have been reading a lot about "The House" in CA. Is that the best place to go? Do you have to travel back to CA for follow up visits? I am not sure how my insurance would work for out of area. I am assuming I would have a 20% copay.
BTW- I am 53 years old and have ringing and fullness in my left ear and some ringing in the right when I lay down. My hearing test showed I have 30% loss on the left side and 15% on the right. I live in South Jersey.
Thank you for any advice or guidance.
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If your tumour volume is less than 12.5 cm3 radiation may also be an option.
The rule of thumb is less than 3 cm . But as your tumour is 2.4cm in the other direction, this maybe worth investigating. Some doctors count the tail in the IAC that adds 1cm that some doctors don't count.
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Hi neetze1 and welcome to this forum of caring and supportive new friends .....
Hearing the diagnosis of an AN is a scary time. Try to relax and take your time as you wade through the various options you may have.
I went to Dr. Friedman at House Ear Clinic in Los Angeles for my last surgery and it was the best decision I ever made. I live in West Virginia so my husband and I flew to LA and back. There was no need to go back there for follow-ups. You must stay for 10 days post-op, which is when most issues come if they are going to happen. I had none and flew home with no problem. Dr. Friedman would have arranged for local follow-up had I needed it.
You may want to send your MRI CD to House for a free consultation, even if you do not go there. See: http://www.houseearclinic.com/consultation/acousticneuroma
My insurance covered the entire thing. Check with the insurance staff at House to see if they have an agreement with your plan. Since this is a very unique tumor, you want the medical expertise of doctors who have treated many acoustic neuromas, not just any brain tumor.
Many thoughts and prayers and ask any questions you may have.
Clarice
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Hi -
I was diagnosed right before thanksgiving and thanks to my ent doc's knowledge of AN and options, I was not toally freaked out at all. He immediately put me in touch with another patient of his that had AN and I sopke to him that day. Fortunatley, I had the benefit of all his research.
Everyone's treatment deciosn is personal to them. I live in CA so was able to personally see Dr. Friedman at House. I sent my MRI to Dr. Chang at Stanford (cyberknife) and Dr. Kondziolka (NYU-Gammaknife) and Dr. Lunsford (UPMC-Gammaknife). I spoke at length with each of them. All this at no charge, except for House as I did go there personally for the consultation.
Based on the size of my tumor (a little smaller than yours) and hearing loss (a little greater than yours) I have ruled out surgery as medically unnecessary and not worth the risk of compications, down time and loss of hearing. I have chosen UPMC Gamma knife and set to go there for procedure on January 24th.
I would be happy to share my thoughts and notes if you want to contact me directly. This organziation is a wonderful resource, so I recommend reading all you can and speaking to as many people with your similar circumstance as possible so you can make the best decsion for you.
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Hi Neetze1,
I'm really sorry to hear about your tumor. I was diagnosed when I was 54 years old. I had a small tumor, but it was wrecking havoc with me, having full blown vertigo attacks with full spins. I chose surgery over radiation, and I didn't let my age stop me from that decision. I've been where you are now, trying to learn, being frightened etc. I live in Monmouth County NJ, but I work in Manhattan, so I access all my medical care in the city. This site is the greatest, and I am sure many other members will post, who have stories to tell about their journeys and hopefully take some of the fear we have about these things.
My advice to you, is to definitely seek other surgeons, and learn as much as you can, so you can make the very best informed decision that is best for you. Don't hesitate to post more questions, you will get replies.
Stay strong,
Bob
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Hi Neetzie1,
My husband, Bob, was diagnosed with a 1.4 cm AN just before Thanksgiving in 2011. I found this site the very first day we learned it was AN & we muddled through on our up & down roller coaster until a decision on treatment & doctor became clear. Clarice (The Great Encourager) said that would happen, but we became so overwhelmed we couldn't see or think straight. We had consultations with 2 doctors at two different facilities here in Phoenix, AZ, & were told by both that due to the size & location of his tumor (& also his age -- 59 at the time), that Bob was a good candidate for radiation. We also sent Bob's MRI results to Dr. Friedman at House & Dr. Chang at Stanford. We have a strong faith & prayed God would open &/or close doors for us along the way. Well, in our phone consultation with Dr. Friedman, we found out Bob was not a candidate for the only surgery he might have considered, so though we took an instant liking to Dr. Friedman, that door closed. Once we found that out, it became pretty clear that radiation was the treatment for him, so it was then just a matter of what kind & where he would have it done. When we first began exploring options, Stanford was not a provider with our insurance, but last Jan. they became in our network (door opened). We were impressed with how quickly & thoroughly Dr. Chang responded to our emails, so we flew there (Stanford) for a consultation & we were both so impressed with him, & how highly he was regarded by others on this site, that Bob made his decision on the spot. So many things factor in -- size, location of your tumor, your age, your insurance, the ability you have for extended "down time" if you would end up needing it, & it's of the utmost importance that your doctor is very experienced in the procedure you choose & that you have a good rapore with him/her. Something else that really helped us was to visit with doctors who do all the different types of procedures -- that way they won't be biased in their recommendation. Also, take advantage of all the great research & opinions of people who have gone before you on this site; it was invaluable to us. That's why I'm back on here today & responding to your post -- to try to give you any tips that might be helpful, & to to let you know it will come together for you. Bob had his CK procedure done early in Aug. & is doing quite well -- still very tired, pretty constant tinnitus, & some other minor things, but we're grateful it is what it is!!! Oh, another thing, we haven't found it to be a problem at all to have had the procedure done in CA with our being in AZ. One of the docs. we consulted with here in Phoenix said if we opted to go out of state, that he would be available to us for follow-ups if it was necessary, but so far it hasn't been. Our best wishes to you -- it will come together, & it will be ok. Judy (Bob's wife)
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Hi and welcome to our rather exclusive club, where everyone is a VIP! :) You'll not find a better place for info, encouragement, and a great place to vent if you need to. We are not doctors and as you no doubt are probably discovering, everyone AN is unique and the outcome will always vary. Just get some differing opinions, such as what Clarice suggested with sending your info to House Ear Clinic. Like she said, you don't have to go there, but it'll be nice to see hear what they say as a course of treatment. When I first got my AN, someone on here told me that whatever decision I make, if it feels right and I feel good about it, then it's the right decision. So hang in there, we've all been through what you are going through and we'll help out as we can. Let us know how it goes, ok? Take care!
Jay
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Hi Neetzie1,
Welcome to this site. You will find much information and caring here. My AN was found Jan 2008 when I was 49 and I remember how scared I was at the time. I was in wait and watch until I just had surgery 4 1/2 weeks ago. I had been sending my MRI's to House until this past year. I had really wanted to go there for surgery but my husband is disabled and though I have wonderful insurance I knew we could not afford the trip and expense of staying there 10 days. I ended up having my surgery in NC and have had good results so far, I loved my doctors and they could not have been more caring. It is a personal decision as others have said. I went back and forth over the years between radiation and surgery and in the end decided I wanted it out but it was a hard decision. Take your time and read about the options and make a decision that feels right to you. Know that we are all here for you and willing to answer any questions you may have. Hang in there! Hugs to you!!((()))
Glenda
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Thank you all for your replies. They are helpful and comforting! I do plan to send my MRI CD to House. I am very interested in knowing their opinion. It is nice to know that there might be a chance of it being covered if I choose to go there for surgery. I have read that radiation might cause the tumor to swell and I am not sure if that will cause more problems for me. Right now, I do not have any problems, except for this very annoying buzzing in my ear (and the hearing loss of course). The thought of vertigo scares me. I can not stand that sensation. I wont even go on a merry-go-round!
I think I would prefer the radiation over surgery (because of the down time and the thought of a hole being drilled into my head is not very appealing.)
I still have to have the follow up appt with the ENT. I called his office today to see if we could start the process of setting up a consult with whomever he was going to recommend and I kind of (well not really kind-of, did) sense an attitude of "this is no big deal" from them. They are planning on sending me to University of Pennsylvania to a Dr. Lukinstein. I don't see Penn on this site as a recommended facility. Any thoughts or experiences with him or Penn? Should you go someplace that is not on the list?
Again, thank you all for your replies and for the warm welcome into the "club." I am very grateful you are here. You are giving me encouragement that I can get through this. Just how much it is going to change my life is what is unknown.
Thank you!
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The swelling from radiation is temporary. Not all tumours swell, many dont, and most will shrink to be smaller than there original size.
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Hi, neetz. Welcome to the Forum. Sorry to hear about your AN - diagnosis can be a very scary thing - but you'll get through this. In a way those of us here are truly blessed - as 99.9% of ANs are benign; there are MUCH worse things you can be told you have.
House is a great place, but it's not the only nor is it necessarily the best place to have your AN treated. Patients who have their surgery @ House have outcomes that are just as good as those of us who had surgery elsewhere - and in some causes lot of us who had surgery elsewhere had better outcomes. AN surgery, like life, is a crap shoot - no one can guarantee you anything 100%. That said, it's vital to have treatment (be it radiation or surgery) by a doctor or a team of doctors who are experienced and qualified. A great place to start is on this website with a list of docs/facilities around the country that the ANA has certified as Centers of Excellence.
In your area Jefferson is a great choice - and there are numerous wonderful docs in New York. Why travel across the country when you have great options so much closer to home?
Just my two cents,
Jan
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Hi Neetz and welcome! I had my surgery in May 2012 and, honestly, haven't been back on the forum too much now that I consider myself pretty much fully recovered. I do think it's important though that we posties turn around and help those who come after us because it is a very difficult and scary time when you discover you have a brain tumor.
I didn't have my AN removed at House. I live in Ohio and had everything done at the Cleveland Clinic by a wonderful group of doctors, surgeons, nurses, and therapists. Again, it's your decision but know that House isn't your only option and to research local places that may serve you just as well.
I kept a blog of my entire experience and have been told that it is helpful to those starting their very own AN journey so please feel free to check it out and leave me messages there as I check it often. The link is www.awkwardturtlesan.blogspot.com (http://www.awkwardturtlesan.blogspot.com).
Praying for you for peace and comfort.
Manders
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Anita,
House is a great place, but as others have said it is not the only place if you decide on surgery. I did go to House and what made the decision for me was the experience of the doctors. I met with some very qualified doctors in my local area, but they didn't have nearly the experience that the House doctors had. That may not be the case for you, as your local doctors may have a lot more experience with ANs than mine did.
I can tell you that House did accept my insurance even though I live and work in Maryland. It has been 2 months since my surgery and so far no billing surprises.
Good luck to you with your research and decision making,
Ken
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Thank you all again for your replies. I have still not made a decision. I am still trying to get appointments and check out my options.
So far I have two opinions and two different types of surgery recommendations. House says Traslab and Jefferson says Retrosigmoid. Now I am trying to research the pros and cons of both. I am waiting for a consultation with a radiologist. This is so confusing. Each option has different pitfalls (as you all know). I am very afraid of the possibility of severe headaches. Has everyone that has had Retorsigmoid had headaches? Should I expect eye problems with both types? Thanks!
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I had retrosigmoid and have no headaches or eye problems; no facial paralysis either.
Keep in mind that retrosigmoid gives you a chance of keeping your hearing - unlike translab that automatically "takes" it - but the odds of keeping it aren't good. Less than 50/50 I believe.
Jan
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I am very afraid of the possibility of severe headaches. Has everyone that has had Retorsigmoid had headaches? Should I expect eye problems with both types? Thanks!
I underwent the Retrosigmoid procedure and did not experience headaches. Not once. Slight double vision for approximately the first 72 hours post-op, then it went away and never returned. No vision problems of any kind afterward. No facial nerve complications, either. However, each AN patient is unique and so are our individual outcomes, often depending on tumor size, location and the surgeon's skill. As you know by now, there simply are no 'guarantees' in this kind of surgery.
Jim
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Hello there.
I'm sorry you had to join our club. We are glad you found us tho!!! LOL
I was dx age 29 1.4-1.5 something like that and I was devastated. My world suddenly came to a stand still. It was awful. At the time I lived in Seattle and met a few doctors for opinions. I decided to have CK done and that was Jan 2008 (wow 5 years ago :o). All was well until November 2011. I started to have trigeminal pain. Had an MRI and my AN did not grow but was touching my trigeminal nerve??? I'm not sure why I started to be bothered by this if it had not grown? NE-ways I was in terrible pain. I sent my scans to Dr. Medberry who specializes in radiation treatment and he wanted me to wait and see how things pan out 6 months from then....I was in pain and was not going to wait that long.
Long story short I sent my scans to House attn:Dr. Friedman. Wonderful decision. I did not want surgery because well.....it scared the heck out of me. I did decide to have surgery March 7, 2012. If you read my past posts you will see that I still have my AN. Dr. Schwartz and I decided since my AN did not grow and my hearing was perfect that he felt to just take enough off the trigeminal nerve and do a MVD surgery. This is what they do for trigeminal sufferers.
I am very thankful to have such wonderful surgeons. House is highly respected and a place for you to consider. My opinion.
Best of luck no matter what your decision is.
Mindy
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Jan, I was told by the neuro surgeon that I would not have hearing with the Retrosigmoid. In fact, they said hearing was not their priority. I am happy that both you and Jim do not have headaches.
Mindy, I am glad you didnt wait 6 months for help. What was that Dr thinking?? House seems to be an excellent place.
I am still on my research journey. This week I check out radiation. Both fractional and proton.
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??? Just recently diagnosed with fairly small AN. 0.6x1.1x0.6 symptoms i thought had appeared approx 2 mths ago but since joining this forum i think i have prob had symptoms for the past 2-3 years. My symptoms are getting worst very fast. I get constant ringing, buzzing,headaches, sometimes constant and at other times intermittently, along with searing pain in my ear, i can only describe it either as a knife stabbing, an iron or having my ear dug from the inside out with a rusty spoon. At times it is very tolerable and at others it can become excruciating. I can deal with a rather slow process as it seems things always are in Canada. But my symptoms are beginning to affect everything and my quality of life, if the pain gets any worse i will be forced to take a leave from work. As someone had stated before its easier to deal with this kind of pain from the inner dwellings of your home. I'm glad to have a diagnosis because i pushed the docs and said this was not normal but its I'm rather fearful when i realize how long this process will take. Like what the heck is my ear going to fall off my head and melt off before i get treatment. what does everyone do with the rest of their lives ??? :( :-X :-\ :'(. I need answers asap
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hello, neetze,
don't be sad, as somebody said in this thread, there really are far more terrible things that can happen to somebody than a AN (and I have way more problems than the average AN-patient!). Getting a lot of information is the best thing you can do. It is important to have the surgery done by somebody who actually performs it very, very often. You will find out who that is in your region (or elsewhere). I think it is also a good idea to inform only the people who will be helpful in an essential way. I had the impression that telling "everybody" just would distract me, when I needed concentration. You will find the best way to deal with it, and you will see that things get less scary day by day (and the more you get used to the idea of what is happening to you).
kind regards
michaela
2009 diagnosis (AN 3 cm diameter), 2010: surgery, then regrowth. 2011: GK; first darkening of the tumor, then regrowth. Now awaiting new treatment (surgery).
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Thank you Michaela. I have made my decision and it is House. I think they have the most experience.
I have been trying to only inform people that are in my circle because it is distracting and I am trying to work in a very public job.
Word seems to be traveling very quickly and I have one more week to work. It is going to be very hard week! :-[
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Anita, please keep us updated. I also chose House with middle fossa surgery and am doing well after 7 months. Remember that vestibular symptoms may be a problem for awhile after surgery.
Karen
Karen
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Update,
I am back home from my 3/20/13 translab surgery at HEI. I can only say that I am doing much better than I expected! I have full facial function with some numbness in the lip, tongue and left cheek. I am improving everyday. I had some p.t. today and we worked on strengthening and balance. I am adjusting to being SSD. I find it hard to tell where sounds are coming from. I did find that while I was in Los Angeles I was having trouble in crowded noisy places. I have not ventured out anyplace since I have been home as I prefer to just be home! Thank you all for your support!
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Congratulations postie. You have come out on the other side! I'm glad to hear you are doing better than you expected. Take good care,
Karen
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Hey Anita, glad to hear all is well and you did well with your surgery. I bet it must feel good to have the worse of it behind you! Take care and keep us updated as you continue to get better!
Jay