ANA Discussion Forum
General Category => AN Issues => Topic started by: Greg M on January 09, 2009, 09:23:03 pm
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First of all, I thank everyone for sharing their stories and I wish you the best of healing. This forum has helped tremendously! My name is Greg and I'm 32 years of age, I received the bad news on Tuesday. My ENT received the MRI and told me I had an AN in the left ear. He said it was very small. He did not tell me the actual size, is he supposed to? Wait for the surgeon? The ONLY symptoms I am having is the lost of high frequency tones. I have great balance, and can understand vocabulary at 95%. I feel NORMAL other than the hearing. I have not seen any surgens yet but I am going to OSHU in Portland Oregon for futher consultation. I live in Corvallis Oregon, I also plan to send my files to the House in Cali., that is super cool that they will give a free consoultation over the phone. I don't know yet what treatment options are for me because I don't know the details of my case yet, which is nerve racking,(literally)! I've read about all the treatment options in the last two day's and I am freaked! I don't want to do the surgeries everyone seems to be recomendeding, I don't want radiation, and I don't want to wait for it to grow. What a pickle! I did just read the post about Jared, Endoscopic Surgery, yes it's still sugery but it seems to me that that would be the best possible treatment for a AN. The risks
seem to be considerbly lower than the other procedures. That would be my logical choice, I guess. I am confused beyond words. If anyone knows anything about OSHU AN surgery team, please let me know what you know. Anyone that knows about the endoscopic procedure please let me know. I have researched non stop since the news, Iv'e learned alot on the web and this forum. Iv'e read all about the other procedures to treat AN's, but this is the first time I heard about Endoscopic. To tell you all the truth, I am some what RELEIVED that this option is on the table. Why isn't Endoscopic treatment more talked about, it seems so much better than anything I have come accross, so far? From the responses that I have seen here, I am totally asuming this, that some people did not know about Endo treatment was even a option and if they knew, it might have been on the table for them? For me I live in Oregon and have state insurance, I don't know if I can just up and move to Cali to qualify for aid, for Endo treatment, I don't have cash to pay for all this. Does anyone know if Oregon has Endo treatment? Does anyone know patment options for someone who does not have insurance? I'm feeling like I might be stuck with a treatment I'm not confortble going into.... Money,money,money sucks!
Some feelings: I am strong most hours, then it hits me, then I break down and freak! My wife,family and friends are very suportive and all of you seem to be very heart felt people and I really hope all is good with you, you have my prayers. I just feel like my life has flipped upside down and with a three year old son I'm scared to death what will my outcome be? What kind of quality of life am I going to have? I'm going to try to beat this with all my spirit and soul!!! for now I continue my reasearching and i am glad to have found all of you! i really think I should take a break from the reasearch, I am now over loaded..... Maybe watch a movie or something. well blessings to everone. Greg
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Greg~
Welcome! Now, take a DEEP BREATH!! You have a LOT coming at you all at once and sometimes we do need to just stop for a while and breathe!! Know that WHATEVER you do, it will be OK. You will be fine and be there for your little boy. For me, I didn't have the option of the endoscopic - I had surgery 13 years ago when I was 25. You know what? I have an INCREDIBLE life now - I have a wonderful, supportive husband and have gone on to have 3 beautiful daughters. Check out our blog if you want (address below) and see what my life is like 13 years later! PM me if you would like to talk!
K ;D
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Welcome Greg
I agree with Kaybo - deep deep breath. If it is small, then you could have lots and lots of time. You do need more information - how big, where is it etc.
I am a newbie too - a bit older than you at a grand age of 37 years. I have a small AN (5mm x 8mm - all in the IAC, which I am learning is very key to me not having to do anything) with no symptoms other than mild hearing loss. I had my anxiety ridden period leading up to x-mas but had a follow-on today and am quickly reaching peace with the option of just WAITING. It is the right decision for me. However, as you have probably learned - there are many many different options that can be presented, and choices made for a variety of different reasons. No two case are the same, even if the tumor might appear to be identical.
Do your research. But, please relax and enjoy the day-to-day stuff. This is far from a bad diagnosis - and so much better than a lot of different options.
I have PM'd many people on the boards and EVERYONE has come back with great suggestions/ideas/words of wisdom - so if you find someone with a similar situation, or someone who seems similar to your personality, then send a PM. I know people will respond and offer great advice. I have found these boards to be incredibly useful ... even if the American way is pretty darn different than the Cdn way (so you have to take my words with a grain of salt!)
Good luck, cheer up, and get set to learn more about cranial nerves, cranionomies, radiation options, schwan cells - and the list goes on and on - then you would have ever imagined a lay person could pick-up off the internet, or internet board.
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Hello Greg- Welcome to the forum but sorry you have to be here. I remember feeling just like you are now after the news "you have a small Grade I brain tumor that is benign". I think the breath was knocked out of me! You are amoung the best ANers here and the support you will get as well as information will give you strength to deal with whatever lies ahead.
I am now seeing Dr. @ Johns Hopkins for a 3 consultation. You will have plenty of time to research your options. There is alot of good info and some not so good. The ANA will send you a packet on AN's and treatments if you write to them.
Take care and stay connected. All will be ok. Helen
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Greg, welcome and I know that you have come to the right place for all the emotions that you are having. I remember when my ENT told me last July that he had come across this only 4 times in his 20+ year career and I was his youngest patient. I just sat there with my wife "lost". What is this? I have never heard of acoustic neuroma. Is this really a big issue? Should I wait? I too would wake up in the middle of the night with what felt like a huge rock on me. Like Kaybo say's stop and take a deep breath, you are not alone. Draw strength from your family and friends and be strong. You have taken the first step on this journey and there are so many wonderful people that can and will share information. I was blessed to find a AN support group here in Jacksonville,FL. Just talking to people there on what their experiences helped me make my decision. I am now 3 months after surgery and I am so thankful for the help I received during my AN journey and I feel great. May GOD guide you during your journey and we look forward to your future posts.
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Hi Greg,
Welcome. We have a lot in common. I also had a small AN and the same symptoms as you do now. Unlike a lot of others, my dr. advised me to have the surgery asap in order to save my hearing. I had the mid fossa surgery 2 months later. No complications, hearing was saved and I'm back to my normal life.
As others have said - take a deep breath. The one thing that I recall from the research that I did before I made the decision to have surgery was that the endoscope surgery was less invasive, but the risks are much higher. Maybe that has changed??
Please know that the point you are at now is the hardest part. Doing the research and making a decision as to what treatment option you will do. Have you looked into CK or GK at all? That may be something you might want to check out. There are several folks on the forum who can give you their personal experiences with that option. Ultimately you are the only one who will know what treatment option is right for you. Don't freak out. It's scary for sure - but you'll be fine. And you'll be there for your family.
All of us posties on the site are proof of that!! ;D
Cathy
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Hi Greg,
I too am fairly new. I was diagnosed about 1 month ago and I too have a small tumor resting quite nicely on my vestibular nerve. My symptoms are pretty much constant nausea, some dizziness (but improving with balance exercises...and the Wii Fit), occasional tinnitus, and occasional tingling/mild pain in my left cheek.
I am still very overwhelmed, I'm going for another opinion and sending my info to House clinic also...
I do find that there are a lot of "newbies" on here and we all seem to have the same feelings....and all the veterans on this site take us under their wings and guide us with comforting words and their experiences.
I too don't want to do any of the options either but eventually I'll have to make the choice...so just keep investigating, the more you know the more questions you will have....just keep asking them....you'll find a lot of answers here.
Hang in there, From one of your fellow Newbies
Dawn
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Hi Greg,
Welcome to the forum. Breathe. Again. You will be okay. :)
I live in Portland, so I know a little about what is available in Oregon. Endoscopic surgery for ANs is only being done at two places in the country, as far as I know: SBI in California, and at U. of Pittsburgh.
You do have time to check this all out, so relax and do some research. One option worth considering for a small AN, especially when your hearing is in good shape, is radiation treatment. There is a Gammaknife facility in Portland, and a Cyberknife facility in Vancouver, WA, just across the river.
There are good surgeons at OHSU, I know several people that have been to them. They are not House Ear Clinic, but they are certainly qualified. In fact, there is a meeting of the Portland ANA group at the end of February. You should come up and meet some of the local ANers, they can tell you all about OSHU and other places. Let me know if you are interested. I would do that before you schedule any treatment, and yes, you can takes weeks and months at this point to decide on what to do.
Best wishes and hope to hear more from you.
Steve
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GREG,
THE INITIAL SHOCK IS OVERWHELMING, BUT GETTING YOUR FACTS AND OPTIONS AND HAVING SUPPORT WILL EASE YOUR TROUBLED MIND AND SOUL! YOU ARE GONNA BE AROUND FOR A LONG TIME, SO BREATHE AND RELAX... IT WILL BE ALRIGHT!
YOU SEEM TO HAVE YOUR MIND MADE UP THAT YOU ARE GONNA BEAT THIS THING, SO PUT YOUR BOXING GLOVES ON AND DO IT! DETERMINATION WINS EVERY TIME! ;)
GO GREG!!!!!!!! ;D
PRAYING FOR YOU,
TAMMI
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What kind of quality of life am I going to have?
Almost forgot this question. According to Stoneaxe, you will be spending a lot of time doing stand up paddleboard:
http://anausa.org/forum/index.php?topic=8379.0
If I ever get my act together, you will be doing it wearing a knit hat. ;D
Steve
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Thank you all for your encouraging words and prayers. I am not feeling any balance issues, I do Tai Chi and Yoga maybe thats helping me and i just don't realize it. The paddle board is something I would want to do. Steve I am interested in coming up for the AN meeting in February. I'm glad to hear that whatever treatment I choose, there are good results around the board, we are all blessed that the there is even a possibility that we can feel some what normal after being diagnosed with this thing. I would like to keep sharing any updates I have with you all, thanks for the outlet. Do I just keep posting on this thread or do I start new ones as I progress to complete healing with this thing? Also how do I send a personal message or respond to one? I don't what I would do right now if I was not talking with you all about this. Talking with people who you have this unfortunate position in life is healing within it's self, to me. I think you all will be rewarded for your work. Thanks again and keep up the positive vibrations and I will do the same. Greg
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Greg~
If you look on the left of the screen, you see some little icons (right under your name)- rool you cursor over them and they will say what they are. The one that looks like a coversation bubble is for a Personal Message (PM). I would think you can stay on this thread - the moderators are VERY good about moving things around if it should be in another area!! ::)
K
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Yes, this thread is fine for now. :)
I would start a new one if you get to a point where you have a specific question on say surgery and facial nerves, or radiation safety, in which case you could post in one of the specific topic areas.
If you have trouble using the personal messages, let us know. You can always post here, many of us regularly look at all new posts. There is some basic information on using the forum here: http://anausa.org/forum/index.php?topic=2823.0
I just sent you a PM. Up at the very top of the page, by your name and user info, it should tell you how many new messages you have. You can click there to see them.
Steve
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Hi, Greg and welcome.
I don't have a lot of advice to offer that is different from the others who've already responded.
I had surgery in May 2007 and everything turned out very well for me. I am SSD (single-sided deaf) but that's really not a huge deal - plus I have a BAHA implant that's been extremely helpful.
You asked why others didn't have endoscopic surgery. I didn't have it because I didn't know it was a possibility. But even if I had known I don't think I would have chosen it. It's only my opinion, but I don't feel it's been used enough for removing ANs. In fact, in the world of ANs the only place I know of that does endoscopic surgery is SBI - compared to lots of places that do "conventional" AN surgery.
I'm not all all knocking SBI here - there have been some great outcomes reported - I'm just saying that personally it's not for me.
As far as House Ear (HEI) goes, it has a wonderful reputation, but it's not financially or logistically possible for everyone to have their surgery there. I had my surgery in Illinois where I live and my docs were just as qualified as those at House. I have never felt like I went to a "lesser" place for my surgery and I have no regrets that I stayed close to home. So, I think OSHU would be a great choice for you.
Being diagnosed with an AN can be overwhelming and frightening - as you, and those of us on this forum, well know. I always recommend that newbies contact the ANA and request their informational literature. It's a great resource and I found it very helpful to read about ANs and their treatment in simple, non-medical language.
Good luck,
Jan
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Hi Greg,
May I also welcome you to this wonderful informational sight made up of truly good and caring people. As another Oregonian I also welcome you. There are many Oregonians that share the same DX. as you, with varying stories regarding their procedures and outcomes. It's true all of this information can be mind boggling, however knowledge is power! It's very important that you find out the size and location of your AN so that you'll know what options are available to you. I believe that Steve has invited you to our local AN meetings and it would be a great benefit for you and your wife to attend. It's also a great way to put faces with names and learn more about what your AN journey may be like. Just remember, we all care for each other and want to help as much as we can. You need to know that we all share the same feelings you have had so far, and like you we all go forward with what treatment we feel is best, or Watch and Wait, as in my case, after researching all available data. There is definite peace and comfort awaiting you when you have come to an informed decision. Sending you warm and caring prayers for your successful journey,
Jackie
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Hi Greg and welcome,
I think you will find this forum a wonderful source of information and comfort. I don't have a lot to add as you have already gotten a lot of good advice and information. I did know about the possibility of endoscopic treatment, but like Jan was only aware of SBI as a place that offered it. I didn't want to travel that far and wasn't sure how good an option it was for me. At the time I was diagnosed, I had 80% speech discrimination and I'm pretty sure, that like translab, endoscopic treatment causes you to lose whatever hearing you have left, but I could be wrong. At that time I was hoping to save the hearing I had left -- also none of the surgeons or radiation oncologieists I saw mentioned the endoscopic option and I failed to bring it up myself. As it turned out, I had two huge hearing drops pror to my surgery and ended up being SSD anyway. Not a huge deal since I just had BAHA surgery (BAHA is a hearing implant as Jan mentioned) and will get my processor in about three months.
You should find out how large your AN is and what options are open to you. I can't answer your insurance questions, but hopefully they will be answered soon by someone who can. As Kaybo said, you are going through the hardest part of the AN journey right now. Diagnosis and treatment choice are the hardest part -- once you make your treatment choice things seem a lot better. Do your research and get as many opinions as you feel you need to be comfortable with your choice. Feel free to ask as many questions as you have and post as often as you want or need to, we will be here to suppport your however we can.
Best wishes,
Wendy
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Hi Greg - and welcome!
I am sure you will be hearing from some of the other folks in the Oregon area, but wanted to also give you a shout-out from the East Coast (I see Wendy beat me to it!) I encourage you to go to the local AN meeting that Steve mentioned. You'll find that the people who get ANs seem to be particularly nice and helpful!
You might want to send a PM to JerseyGirl (just do a search for her). She had endoscopic surger 18 months ago at SBI. That was her second surgery (she is one of the rare people who had a regrowth 20 years later). She was very happy with the results at SBI and I am sure she would be happy to share some of her experiences with you.
I think you are at the most overwhelming phase of this whole process. I can remember feeling completely freaked out at first, and totally overwhelmed. The best advice I can give you is to take your time doing your research and get as many medical opinions as you need. And, definitely, talk to other people who've gone through this - I think you will find that we are all happy to share our experiences. Keep in mind that you are NOT alone.
Keep breathing - that yoga breathing is going to come in very handy for you!
Debbi
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Hi, Greg:
I'm sorry to be tardy to the welcoming committee but this was a busy day for me.
I trust you'll find a satisfactory approach to addressing your AN and within a few weeks, feel much calmer about the situation. Although non-invasive irradiation may well be a viable approach for you, endoscopic surgery is quite new and not readily available but it does seem promising and worth looking into. HEI is great but know there are many well-qualified doctors around the country who regularly perform AN removal surgery. My neurosurgeon isn't famous but he is highly respected in his area and did a fantastic job with my surgery. Beyond these comments, I can't add anything truly substantive to the previous messages so I'll simply wish you all the best as you begin your journey with an acoustic neuroma. :)
Jim
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Hi Greg,
Welcome from a fellow Oregonian. I am currently living in Vancouver, Washington, but I'm still an Oregonian. We visit Corvallis often because we have family there.
Sorry you are in our AN community now, but we're a nice bunch and hopefully helpful to you. I was treated at Providence in Portland at their Gamma Knife Center. There is now a Cyber knife at Salmon Creek Legacy Hospital here in Vancouver.
Take care,
Sue in Vancouver USA
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Hi fellow Newbie,
I was dx March 08 with a small AN right sided. I am going for my third MRI on Feb 4, 2009. I'm watching and waiting for now due to the advise of a Dr. McKenna at the Boston Eye and Ear. I'm from Massachusetts. Again as everyone has said, take a deep breath, take a step back and refocus.
I too was overwhelmed, but this forum has been wonderful. Do as much research as you can and when it becomes overwhelming take a break from researching and focus on something else like your family.
I am nervous about this upcoming MRI because my symptoms has gotten worse since August of 08. I suffer from dizziness, balance issues, fatigue, and some facial and ear pain along with headaches daily. I don't mind being on w&w, because I still have not made up my mind on what to do. So again when I become overwhelmed, I just try not to focus too much on my
AN and try to focus on something else, like my family. Email me if you want to talk more and we can even talk by phone is you want. I'm a lot older, I think, then you. I'm 46, buth when it comes to AN's, age does not matter.
Good Luck
LisaP :D