ANA Discussion Forum
General Category => AN Issues => Topic started by: edbcar on November 10, 2008, 11:27:56 am
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Just a quick note to introduce myself, had a mri scan 16 months ago due to hearing loss and tinitus which i thought was industrial deafness. Was confirmed with an AN which i had never heard of before have since had another scan and minimal size increase 13mm am considering surgery as tinitus is prety bad, i have a bit of time yet before i make a decision so will listen if i can to advice and experiences here.
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Hi and welcome,
Very sorry to hear about your diagnosis, but you have found a great place to start your education into vestibular schwannomas.
I am a surgical patient and doing well. I had bad issues with balance for a few years, but this was taken care of in 2008 and today (first time) I went outside jogging for 40 minutes.
I had constant tinnitus for 12 years with hearing loss (mild at time of test) and told it was due to age and/or loud Springsteen concert back in the 80's! It took that long for a diagnosis.
I chose surgery vs radiation as radiation wouldn't help me with my balance or face as the facial nerve was becoming involved. I wanted improvement and also felt better knowing surgery (odds are in favor) would give me total removal with very little possibility of return. I believe it's a 1%-2% chance. I figured IF this tumor would start to grow again at least the scar tissue from radiation wouldn't pose a problem if they needed to go in again. Surgery for me was a good choice as I had repeat surgery (through the ear canal) to help with problem of "peripheral vertigo".
I still have constant tinnitus so thinking surgery will definately help that is not correct way to think as many here still have constant noise. Some less others more. I do not find it a problem at all as I've grown accustomed to it (been 17 years now) and I have had it in my good ear constantly for 2 years.
Ask any questions you may come up with after you have perused the forum and read personal accounts of how people deal with pre and post diagnosis and treatment. We are here to help you anyway we can.
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Hi. I am also new to this site. I had surgery over radiation. Was told that radiation would be a problem if they had to go for surgery. I had a few more operations be cause of CSF leaks due to my porous anatomy up there. But I would do this way again over radiation. I just didn't want rad. in my body.
Karen
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Just a quick note to introduce myself, had a mri scan 16 months ago due to hearing loss and tinitus which i thought was industrial deafness. Was confirmed with an AN which i had never heard of before have since had another scan and minimal size increase 13mm am considering surgery as tinitus is prety bad, i have a bit of time yet before i make a decision so will listen if i can to advice and experiences here.
Keep in mind, surgery (or radiation for that matter) does not make the "T" go away!! ... the majority of cases.. there is a small percentage where is does go away... and some the that get worse!!! .... I was the common case.. Tinitus stayed with me.. drag....
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Hi,
Welcome! Trust you will get lots of info and help here. You are among friends.
I had surgery too (in June) and just wanted to throw in that the tinnitus did not go away with surgery (but i think the combo of SSD and tinnitus is worse than either alone). I had tinnitus for several years (leading to diagnosis). I can't say it's worse or better post surgery, but certainly it does GET worse now when in crowded, noisy places. I think that wearing an ear plug in the deaf ear is supposed to help, but i have not tired this yet (one more thing on my big to do list). I think most people just adjust (however slowly) to the "noise" that is tinnitus, and/or make changes in their lifestyle to avoid triggers. I am hoping that it will get better in time, but won't hold my breath.
Wishing you all the best as you sort out what to do next.
Trish
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Welcome edbcar,
I had retrosig surgery in June. My tinnitus consisted of various sounds, including but not limited to a buzz and ping. Now, I only have the buzz, but it's louder. I notice it more when I'm tired.
Syl
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Hello and welcome, Edbecar:
The diagnois of an acoustic neuroma is never a pleasant experience but you've come to a good place to discuss it and find direction. Your AN is small enough to be a possible candidate for non-invasive radiation treatment but that is a decision only you - with your doctors help - can make, once you've educated yourself on the pros and cons of surgery versus radiation. We can help do that because collectively, we've had one or the other (or both, in my case) and can impart our experiences to you. The internet also has quite a few sites dedicated to acoustic neuroma information. Just Google 'acoustic neuroma' and see what you get. In the meantime, know that what you have is a benign (non-malignant) tumor that is eminently treatable (surgery and/or radiation) and that whatever your treatment decision, the folks here will support that and do whatever we can to help you through this situation. Please consider these forums as a resource.
Jim
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Hi Edbcar,
Welcome and sorry about your dx, but you’re not alone and you’ve got the best of both worlds. You have an incredible amount of personal experience from everyone here, plus you have outstanding neurosurgical teams out there in the U.S. and all over the world.
I’m a newbie myself as of 2 days ago, 3 weeks post-op today and plan on going back to work next week. I’m in IT and computer networking. I ruled radiation therapy out within minutes. As far as I can see it is for a very small select group of fortunate patients, perhaps you included, who have small discrete tumors and no other involvements. For example, my tumor was cystic, meaning it had a liquidy center and would have been difficult to target and had a high chance of failure. There are other negatives I didn’t want to gamble with, such as it’s not always accurately aimed and can damage surrounding items. I shouldn’t even talk about radiation because I didn’t have it so I will leave that to those with the experience.
As far as surgery, enough can’t be said for finding yourself a top notch Neurotologist even if it’s out of state. My understanding of the difference between a Neurosurgeon and a Neurotologist is that a Neurosurgeon is a surgeon who handles the entire nervous system of the body from head to toe. Neurotology is a compound word neuro and otology having obviously to do with the ear, and a Neurotologist deals with surgery of the base of the skull and anything to do with the ear and is clearly specialized in Acoustic Neuromas. No offense to any Neurosurgeon.
I’m doing well and would have surgery again even knowing what I know now about it. The first couple of weeks post-op are very difficult, but the tumor is gone and I can live with the imbalance and mild to moderate tinnitus that are residual. If you’re interested in how surgery went for me I posted the pertinent points under the thread called “just introducing myself�. And almost everyone here has their story somewhere. There are many differences and similarities in everyone's stories.
All the best, Will Scoggins, Co. Springs, CO
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A welcome from me also, Edbcar. You will find answers to many of your questions here, and lots of lovely people who will share with you their experiences. We all travel the same road, but it's a little bit different for each and every one of us. My AN is a medium sized 2cm tumor and I was treated with Gamma Knife which is killing the darn thing. Symptoms have not gone away, nor do I expect them to. Once tinnitus sets into your brain, it's very, very unlikely that it will ever come out of there. It's one of the most common side effects of acoustic neuroma/vestibular schwannoma (take your pick, it's called both) besides the hearing loss.
My only advice is to get a second opinion, and be sure to talk to somebody who can give you the most up to date informed information on radio-surgery and the different methods of micro surgery. There is still a lot of misinformation out there on this, and sadly, doctors will prefer the method that they know best. Just make sure it's something you are comfortable with, you are informed about, and that you don't feel rushed into something that doesn't need rushing into. You have a slow growing benign tumor, and you do have time to consider your options and to learn as much as you can about the various treatment methods available to you.
Best of luck to you in your treatment and eventual recovery,
Sue in Vancouver USA
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I'd just like to second Sue's advice of getting balanced advice about radiosurgery. After multiple consultations, I chose Cyberknife to treat my AN to save my hearing, avoid facial nerve injury and avoid some of the other complications that can result in surgery. The two alternatives each have their pros and cons, but it is certaintly worth investigating them both. To do that, however, you really need to speak with a neurosurgeon who treats Acoustic Neuromas with gamma knife or cyberknife. The surgeons will not give you a balanced perspective of radiation treatment.
Here's another post I wrote about radiation:
http://anausa.org/forum/index.php?topic=7848.msg83734#msg83734
And my website (below) includes a very detailed account of the research that I conducted when trying to decide whether to have surgery, Gamma Knife or Cyberknife.
I'm not advocating for either treatment approach. I just believe it is important to get even handed information about your options.
Good luck and be well,
Francesco
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As far as surgery, enough can’t be said for finding yourself a top notch Neurotologist even if it’s out of state. My understanding of the difference between a Neurosurgeon and a Neurotologist is that a Neurosurgeon is a surgeon who handles the entire nervous system of the body from head to toe. Neurotology is a compound word neuro and otology having obviously to do with the ear, and a Neurotologist deals with surgery of the base of the skull and anything to do with the ear and is clearly specialized in Acoustic Neuromas. No offense to any Neurosurgeon.
You definitely want a doctor who has experience in treating acoustic neuromas - whether you decide to have surgery or radiation.
Most neurotologists do surgery along with a neurosurgeon, as AN surgery is very "close" work typically done through a microscope and the surgery is usually quite lengthy. The two doctors generally work as a team; alternating the surgical tasks.
Some neurotologists also work as a team with a radiation oncologist when doing radiation like GK or CK.
Jan
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Welcome Edbcar-
I'll second what's already been said - get more than one medical opinion and definitely seek out practicioners with substantial AN experience. If you opt for surgery, keep in mind that this is a very, very complicated surgery and you want a very, very experienced team of hands involved! :)
This forum gives us all the opportunity to talk to other folks, learn about their experiences with various treatment options, vent, celebrate, etc. At the end of the day, though, only you can make the treatment decisoin that is right for you. Meanwhile, you've just made a bunch of new friends here - or as my friend, Lorenzo, calls us - tumour buddies!
Debbi