ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: jdunavan on February 25, 2011, 05:29:04 pm
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So I was diagnosised with AN about 2 weeks ago. It started with a trip to the ENT for frequent headaches and ear pain. I thought it was all allergy and sinus related. I wasn't expecting what I got! First, the doctor I saw had the bedside manner of (as my husband puts it) dog poo. He was awful. But he did get the job done and diagnosised my AN. I was shocked to find out that i had signifcant hearing loss. I just thought my ear was clogged or plugged because of allergies. Then suddenly I having all these tests and and MRI. I went in with a small head ache and 2 weeks later came out with a brain tumor! Not what i had in mind on my list of things to do this year. The doctor quickly got me in contact with a specialist in Atlanta and i ment with him on Wednesday. He went over the options, and because i am only 35 his suggestion was surgery. We (my family and I) agree. So now the next step is to meet with the Nerosurgeon and schedule surgery. Everything is happening so fast, but seems so slow at the same time. I just want it over and done with. But the more I read about this, the more i am realizing i am not going to just get to have surgery and walk away from this like it never happened. I'm scared! I have 3 beautiful children and a wonderful husband. I wasn't planing on being half deaf at 35! It's all a bit much right now, and honestly, I am just glad to have a place to put my thoughts down in writing somewhere. I don't know that I am looking for answers or anything right now, but it is wonderful to be able to get some of these thoughts out there!
Thanks,
Joanne in Georgia
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Joanne ~
Hello and welcome, although I know you wish you didn't have a reason to be posting on the ANA website, I'm glad you discovered us. We understand what you're going through right now and it is a bit upsetting. I felt like I was on an 'express' train and couldn't get off, once my large AN was discovered and surgery was (quickly) scheduled. I was fortunate to find a neurosurgeon very experienced in AN removals. He recommended 'debulking' surgery to reduce the AN (it was pressing hard on my brainstem) cut off it's blood supply and make it amenable to radiation intended to 'kill' it's DNA and effectively stop it from growing, ever again. I'm happy to report that both procedures were very successful with no real complications. Although every AN patient is unique and no one - including the doctor - can guarantee the ultimate outcome of surgery or radiation, AN surgery is not without lots of good outcomes. However, your fears are not unreasonable. AN removal surgery is complicated and carries, like any 'delicate' surgery, inevitable risks. It isn't like other simple operations that have you back to 'normal' within a few days or weeks. In my opinion, the SSD (Single Sided Deafness) you mentioned isn't so terrible, but there are readily available BAHA (Bone Anchored Hearing Aid) devices that can bring your hearing back to a very usable level. More on that will come in posts from folks who have a BAHA, I'm sure. Meanwhile, feel free to vent, ask a question or whatever you need to do. If not here, where? We 'get it' because we've been where you are, now. We survived - and so will you. I'm guessing, with your husband and children supporting you along with us, of course, you'll do quite well, too. :)
Jim
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Hi Joanne and Welcome! I am sorry that you have to join our little club, but you won't find more answers or caring people than here!! I had my surgery when I was 25 and before kids but like you, I have 3 wonderful daughters now and a great life. If you would like to talk to someone that has "been there," I'd be more than happy to give you a call. Just send me a PM (on left) and give me your number and when is the best time to call!
K ;D
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Hi, Joanne! Glad you found us, sorry you had to...I live in GA also - up in Forsyth County...where are you? Which doc in Atl did you meet with? I am going to send you a PM (look for it at the top of your screen - will say you have Message) with my phone # if you'd like to talk. It is scary, but please know that you will be fine and life can be just as full for you post treatment as it is for you now (especially for you w/ 3 little ones :) ). I am older than you, but I had perfect hearing at diagnosis and am now completely deaf on one side. It is an adjustment for sure, but you do adjust...I play tennis, just did a 1/2 marathon (slowly ;) ) and my husband & I ballroom and swing dance every week!
Keep us posted and do give me a call anytime!
Cindy
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Joanne:
Welcome to the club that no one really ever wants to join. Finding out you have an AN is alot to take in, but we are here to help if you need advice, feedback or if you just need to vent. Though our hearing isn't the best, we are good listeners. The AN journey is a challenging one, but you will get through this.
Syl
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Hi Joanne and welcome to this forum .....
Sorry to be late with the welcome, but I was having my own "pity party" for a couple of weeks ..... we are entitled to them, you know. It is so normal to be terrified upon diagnosis, especially if we were caught off guard.
Take a deep breath, stay with us, and we will all walk through this with you.
If you have not already done so, send for the free informational packet from the ANA. See: http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195
Since you have an appointment with a neurosurgeon next week, print the list of questions for physicians from the ANA to take with you. See: http://www.anausa.org/index.php?option=com_content&view=article&id=118&Itemid=116
Many thoughts and prayers.
Clarice
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Hi Joanne,
I am so sorry you got the "AN diagnosis". It's a very undaunting and overwhelming feeling hearing those words but you will find that you are not alone in your AN journey and alot of incredible people are on this forum. We understand what you're going through as we have been there. It's normal what you are feeling right now. I said those same words that I just wanted it over with. That's why I chose surgery and had a middle fossa 7 months ago at House Ear Institute in Los Angeles.
Clarice had a great suggestion in taking those questions listed at that link with you to the Doctor and discussing them. Also, you can call the Acoustic Neuroma Association and ask them to send you pamplets that you can read about your acoustic neuroma. Judy Vitucci is the executive director and the number is #1-770-205-8211. This was very helpful to me. I found the more I read and was informed it relieved my anxieties. Knowlege is definately empowering.
Hang in there right now and you can do this. You can get through this with support all around you. I am a mother of 5 children so I know your concerns but you just adapt to your new changes in recovery and push on. Please feel free to message me your number if you need to talk.
I will keep you in my prayers!
Wendy :)
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G'day Joanne - you have come to the right place for support and guidance. Write as much as you can as it helps newbies who have just been diagnosed as well as us being there for you whenever and however we can.
Clarice - thanks for those links. I've printed the questions out to take to the hospital tomorrow when I have my checkup.
Hope to hear from you again soon, Joanne.
Regards,
Suu xxoo
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Dear Joanne, bless you! It is a shock to get an AN diagnosis. When my doctor told me, I seriously asked him if he had the correct medical records in hand - that there must be a mix-up with someone else :-[. It is overwhelming, but you will get through it. Life goes on and everything that is beautiful and wonderful in your life (e.g., your husband and 3 little ones!) will remain beautiful and wonderful. Like all so called "bad" things that happen as we go through life, having an AN will bring gifts and blessings as well.
I think the MAIN thing you need to do and probably everyone here would agree is to find a Doctor who specializes in ANs. Get second and third opinions - find a professional team that you feel good about. You didn't mention the size of your tumor. If it's small or medium-sized (2.5 cm or less), gamma-knife treatment is something to consider. Research your choices carefully and give yourself time to do so.
We are all here for you - please write as needed!
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Hi, Joanne, welcome to the Forum.
Being diagnosed with an Acoustic Neuroma is definitely overwhelming - I know, I've been there :)
But you'll get through this; there is life after an AN. Surgery isn't as bad as it sounds. As for being 1/2 deaf, I found that the solution to the problem is a BAHA (bone-anchored hearing aid). It's fabulous, in my opinion.
You should get in touch with both the ANA and cindyj - excellent resources.
Jan
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Hi Joanne in Georgia,
I am sorry you are going through this but as the others have said this is a great support group. I was diagnosed last June 2010 and when my ENT told me after reading my MRI that I had an AN I shut down. Luckly my husband was there to hear what she had to say. I came home and began to research online and became more anxious. I wanted it to be fixed and better . I was experiencing Vertigo an I needed help. I opted for the Gamma Knife since I live near Gainsville, Florida and Shands had the Gamma Knife and Dr. Friedman who was one of the inventors of the GK.
I met with him and his team and felt sure I had made the right decision. After my GK I felt great . I have had some symptoms arise 4 months after surgery , facial weakness and hearing loss , but I am told that is normal and they should improve. There was some swelling putting pressure on the nerves. I have seen some improvement and am hopeful that it will be totally better soon. I do not think the hearing will improve but the facial weakness should.
Like the others have said you learn to live with it and make the best of each day. It is a slow process and one needs patience. I was told by my doctor's nurse that the tumor is slow growing and it is also slow to shrink.
I mainly chose the GK because of the great doctor's at Shands and if it did not work I knew I always had the choice of surgery down the road. I am 63 and retired so I can rest and take my time each day. I know when you are young and have a family it is harder to deal but with the support of your husband and children and the ANA group you will be fine. Hang in there and if you have any questions just write me on my email address. Keep us informed and relax.
Chris P.
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Hi Joanne,
I remember feeling a lot like you. My original reason to see the doctor was " sinus" related too! I think the important thing to do is find a surgeon with lots of experience in removing AN and the support of your family , so you are on the right track :) best of luck to you.
Susie
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Hi Joanne,
I was also recently diagnosed and in the process of scheduling my appointment for my surgery. I am putting it off till June so I can enjoy my youngest sons senior year and all that goes along with it. I am also going away on a family trip to Cancun in May.
Do the very best you can planning, make the best decisions for the best possible outcome, most importantly get the best team of Doctors that specialize in AN surgery.
After that try to focus on the positive, sure there are negatives but I do believe most get resolved in time. This surgery rarely I believe has serious life long consequences, when caught in time and done by component and dedicated professionals. You are young, with a family that will give you the motivation to get through this.
Be positive, get the best team of Doctors and you will do great!
Bill
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Hi Joane! I know I am late in coming into this, but I just wanted to add my wishes and prayers to the already growing list here. I can't offer much more than what has already been said. As you can see, we are a good bunch of caring people who're all in various stages of this thing we call AN. As Jan said, there is life after surgery and this all will seem like a distant memory. For now, just keep asking questions and get your options. Also, vent as much as possible on here, if you want! We all have at one point or another! :) Take care and good luck!
Jay
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Hi Joane,
Another belated welcome. Hopefullly you are feeling a bit better now as things are settling down with the diagnoses shock and trauma >:(
One good thing is you know it is there, and it can be addressed, treated, and you can get on with your life.
Lots of people go years and years with symptoms that never add up and the tumor is then found (me)~ so you are ahead of the game in that arena!
I understand about things happening fast and slow at the same time. Kind of a surreal state of life you are in- that "limbo" stage between diagnoses and treatment.
Please continue to post questions, concerns, angst, worries. You name it, this is a great place!
One day at a time,
Maureen
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Thank you for all of your kind words. Saturday was a bad day. It was really the first day that I knew I didn't need to be anywhere and I had time to fall apart. So I did. But now that i had that time, i really feel like i got it out and i can deal with this now. I just needed that day to vent and release I guess. I have a GREAT support system here, with my family and my church family. I really feel at peace now. I know that God is going to be glorified one way or another in this situation. I am excited to see how I fit into that plan. Thanks again for the support and words of encouragement.
My husband and I are seeing a neurosurgeon on friday and will had a lot of questions there.
Feeling normal again,
Joanne
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Joanne,
I hope you find this forum as usefull as I did. I too was just diagnosed just recently in January and my first visit with a specilist was absoultely overwhelming. I understood what they said to me and they were nice and kind about if but it was sort of like being hit by a 2x4. But one of the things they gave me was a brochure form ANA and i looked it up and, well, here I am. I learned a lot - A LOT in this forum and form the ANA publications. Use them and learn as much as you can. By the time I got my second opinion I was able to ask intelligent questions and decided that I was a good candidate to watch and wait. My symptoms,like yours, are relatively mild - "wierd" hearing and ringing in my ears - but no hearing loss or anything else. These grow very slowly and and it's not likley that your symptoms will change abruptly - which gives you time to drink it in and get comfortable with the options. Don't rush in if you don't need to but still do what you are comfortable with. Beleive me, the thought of hearing loss at any age (I'm 49) isn't pleasant but you do have options - which I am sure you've already figured out from all of the fantastic responses you've gotten. Welcome and I hope you find some peace here!
Chris
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I guess you could call me a recent diagnosis too...my (ex, and not husband) neurologist did an EEG and MRI w/contrast May 2008 and said everything was normal. In Jan 2011 I needed copies of my current medical records and got them. I read them and my world fell apart..."Brain Tumor" was listed. I read the Radiologist report and he "suspected" it to be an Acoustic Neuroma but that it could also be unknown etiology...About a week prior to finding this out I was having severe ear pain, headaches, hearing loss and the pain increased when I laid down. A friend works at a hearing aid company and performed a hearing test ...then she called my neurologist. She finally PERSUADED him into ordering it. Well now, in 2 1/2 years it has doubled in size and is 2.3cm x 1.9cm x 1.6cm. I am finding it very difficult keeping my anger and frustration at a manageable level. I pass his office 3-4 times a week and just want to go in there and scream at him. Just dealing with the balance issues, dizziness and the "brain freezes" are very difficult to manage. I have seen Dr. Syms (Neurotologist) and Dr. Porter (Neurosurgeon) and surgery is scheduled for April 7th for a Retro Sig. I AM SCARED!!!!.
Christine
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OMG Christine!! I have heard a lot of stories on here, like people finding out about their AN's by way of something totally unrelated, but I have never heard of a case where your AN WAS spotted yet they called it normal!! Thank God you picked up your records and found out about this, who knows how much longer you would have gone before things really started to get bad! Anyways, I wish you well with your upcoming surgery and I hope you'll find peace with this at some point...IN the meantime, you can continue to vent on here as much as you want....we are good about these kinds of things! Take care and good luck!
Jay
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Hey Christine, I have had 4 surgeries at Barrows' two with Dr. Porter. I as well as everyone here has faced that same fear you are experiencing now. I wish there was a way to be rid of that feeling. I can tell you that each of my times at Barrows was truly a first class experience, from the food service workers to the Neurosurgeon. I have had two other surgeries at another Hospital, both of them had to be re-visioned at Barrow. Dr. Porter at least in my experience has been great, I hope this helps a little.
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Joanne - good luck on Friday and I hope you get the answers that you'll be asking. Can't wait to find out more and hoping it's good news for you.
Christine - I think we all feel your fear. I hope and pray that all ends up well for you too. Lean on us here and we'll all jump hurdles to come to your aid.
Hugs to both,
Suu xxoo
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Hi everyone...Yesterday my diagnosis went from Idiopathic Sudden Sensorineural hearing loss to AN. I was stressed enough thinking I was going to have my first intratympanic steroid injection when my doc got the results of my MRI and found the tumor. It's small 1mm now so we decided on the wait-and-see option. I know everyone experiences this, but wow...the shock! Three weeks ago I had a little sinus congestion and chalked up the clogged feeling in my ear to that. I had severe hearing loss at my first hearing test and yesterday showed improvement, which was so encouraging until we saw the MRI. I'm 52, single, very healthy, active and in grad school working on a masters in social work (now that my youngest is in college)...I may be my first client! I'm seeing Dr. Ana Kim in NYC with the NY Ear Institute who says the surgery would be at NYU Langone, when and if I go that route. Anyone have experience with of knowledge of either?
I've read many of the posts and look forward to hearing from you caring folks!
1mm right ear