ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Donna R on March 27, 2009, 03:30:42 pm
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Hi, my name is Donna and this is the first time I have actually posted on here. I am so glad I found this forum. I
found out about my AN right before the holidays, and I just finished my second MRI so I am between the watch and wait period and possible surgery. I think I have decided on the surgery. Everything just seems so confusing on what to do...I haven't even heard of acoustic neuroma berfore! I started with some trouble hearing in my left ear, now I have almost none, I am hoping after surgery to get some hearing back, but I'm not counting on it. I am really nervous about the surgery, but I have pretty much decided to go that route.
I am from the Philadelphia area, has anyone here felt so confused on what to do? I have read so much about all of the options...
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Hi Donna R. Welcome to the forum ;D
We were all confused at some point in our AN Journey - some of us still are :D Being scared is another common feeling.
Making your treatment decision will most likely be one of the hardest things you have to do. It's definitely not easy. It should be a personal choice, though. What was right for me (surgery) isn't necessarily right for you. You need to do your research, weigh you options, find the doctor(s) you feel most comfortable with (experience in treating ANs is vital), and then decide.
I'd like to recommend you contact the ANA and ask them for their informational literature. It's very well written and explains a lot - about everything AN - in layman's terms (not medical speak).
Mind if I ask what size your AN is? That will give us a little insight on what your options currently are.
Thanks,
Jan
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Hi Jan...thanks for your input..well, my first MRI showed it was around 2.5 - 3.00 cm. and it did not grow in the 3 months between MRIs. With speaking to my doctor, he really doesn't make the decision for you, but it seems like surgery would be the best option, I pretty much thought I had this decision made, I even thought that I could plan the surgery for the summer while my kids are out of school...but I keep on questioning..I am sure everyone goes through this nervous period?
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Hi Donna and welcome to the group that you don't want to be a part of, but is an AWESOME group of people!! I know that this is a very scary and confusing time. Try to step back, take a breath and take some time for YOU. You will get through this but it does take some thought, paryer, time and patience - among other things! Please feel free to ask ANY questions - we are here to help YOU through this AN Journey! Please PM me if you would like to chat - I'd be more than happy to call you!
K ;D
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K,
Thank you so much! I am very happy to have found this group who are so supportive of each other!
Donna
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Hi, Donna! I'm waiting on my diagnosis and have found so much help here. These people are awesome. If I don't have an AN, I'll still at least lurk because I'll want to see how people are progressing.
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I have been on watch and wait since 6/08 but since my last MRI showed growth I find I now have to make a decision of which surgery to choose and have it done this summer. It gets really hot in Phoenix in the summer so it would be a great time. I tried to list all the pros and cons of microsurgery/gamma/cyberknife on a piece of paper for comparision. Then I listed the pros and cons by priority with how it related to me and my situation. I am a musician, music teacher and golfer. I know it has helped me to just see it on paper. However you go about making your decision, I know that this site is the best! The people on the forum are very supportive and help clear issues us for me. I do not post much but I read a lot of posts and that has also helped me in a very positive way!
I wish you much luck! Paula
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Hi Donna,
Based on size and the fact that you have lost most of your hearing in your AN ear, it is unlikely that you will get more hearing back. Sometimes they can save what hearing you do have.
Also, I think beyond 2.5 cm, surgery is usually the course of action over radiation. Hopefully if I'm wrong someone will chime in. In any event, that's getting to be a large tumor and in my opinion, watch and wait would not be an option for very long. There are many other nerves in that area that may soon be impacted, especially if it grows again.
We are all here for you in your AN journey, and know that prayers and thoughts are heading your way.
Ernie
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Hi Donna,
Based on size and the fact that you have lost most of your hearing in your AN ear, it is unlikely that you will get more hearing back. Sometimes they can save what hearing you do have.
Also, I think beyond 2.5 cm, surgery is usually the course of action over radiation. Hopefully if I'm wrong someone will chime in. In any event, that's getting to be a large tumor and in my opinion, watch and wait would not be an option for very long. There are many other nerves in that area that may soon be impacted, especially if it grows again.
We are all here for you in your AN journey, and know that prayers and thoughts are heading your way.
Ernie
Ernie I agree with what you say here but would like to add as I had a 2.5 cm AN all consults I had with MDs recommended surgery but I did find radiologists who would do radiotherapy on a tumor that size. Of course everyone need decide for themselves but my point is that you can always find someone who will recommend the alternative treatment, you need to consider all opinions. In my case the surgery opinion made more sense to me on a long term basis.
Neal
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Thank you so much for your replies, yes I agree, that is why I am pretty much decided on the surgery.
I have an appointment next month to meet the other doctor who would be working with my doctor on the surgery for the first time, so I guess after seeing him I will definately have to have a decision made...you are all so helpful...thanks!!
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While 2.5 cm is usually the cut off for radiation, some docs will do it for an AN a little larger than that.
My doc, who does GK, told me that at 2.5+ cm radiation would not have been an option for me. But docs are somewhat different and believe in different things to some extent.
Donna R -
I think surgery is a good choice - I hope my earlier response didn't imply that I didn't think it was. I just wanted to make sure that you were given all the possible treatment options that were relevant in your case. Because some docs only do surgery they sometimes don't even mention radiation to their patients. We like to make sure everyone on the forum is fully educated.
That said, surgery isn't a piece of cake, but it's not the end of the world either. It's typical to be nervous - I know I was up until a week or two before surgery; they I developed a wonderful sense of calm. My surgery was almost 2 years ago and today it's just like a distant memory. I'm happy it was my choice, but I'm even happier that it's behind me.
Jan
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Hi Donna,
Glad you found the forum, we are happy to have you join us. We are all in the same boat, or have been. Welcome aboard!
Steve
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Hello - and welcome, Donna ~
I'm sorry you were the recipient of an acoustic neuroma diagnosis but I'm pleased to see you found this site and the forums. We'll support you in whatever way we can, whether you have surgery or radiation. We empathize with your fears and concerns because we've 'been there'. Please stay connected here. I'll look forward to your posts. :)
Jim
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Hi Donna,
Welcome to the forum, yes things can be confusing, but hang in there, take a deep breath. When you first are dx not only are things confusing but you are probably also scared. It is all normal, take your time on your decision and ask all the question that you can. This forum is great.
Best wishes,
LisaP ;D
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Hi Donna,
Sorry I am replying late. I can understand what you are going through. I am also watch and wait. The anxiety is the worst part, but just think most of us are doing it and will come through with it. When is your next MRI? Mine is in September almost 6 months away.
Everybody on the forum is great for support. If you are having a hard time dealing with it, you may want to speak to your family Dr. about it and he may prescribe something. Keep well.
Vivian
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Hi Donna,
Belated welcome to the "club". You will find it to be a wonderful place. Hope you can find some calm; I did once I made a surgery decision. Keep posting!
Marci
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Well, I had my second MRI this month, and it showed no growth. Yes, I do want to talk to my family doctor about everything...I thought if I am going to have the surgery, which I am leaning towards that..I wanted to schedule it for this summer while my kids are out of school, so I will definately make a decision after my appointment with the other doctor who does the surgery with my doctor, that appointment is in April.
Yes, it is very scary, and it is so nice to know that this great forum is here.
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Hi Donna,
Welcome to the forum. :'(
There is great comfort here.
Glad to see that your AN size did not increase. Shouldn't be a problem to wait until the summer.
One doctor appt at a time. Remember it is slow growing and benign. Though you may experience some weird symptoms and think "OMG it is getting bigger."
Yea, maybe it is getting 1/2 of a mm bigger(that's really really small), because it is against the NERVE. So hang in there with the symptoms.
Maureen
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Hi...I was wondering, has anyone had any issues with balance after surgery who had no issues with it before? I don't have any problems now with balance, and I am wondering if I will after the surgery. ...the only thing I deal with now is very dry mouth and the "burnt toungue" feeling and lack of hearing in one ear....I'm certainly not counting on getting any hearing back, but has anyone gotten their normal taste back after?
Thanks to everyone for thier thoughtful posts.
Donna
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Hi...I was wondering, has anyone had any issues with balance after surgery who had no issues with it before? I don't have any problems now with balance, and I am wondering if I will after the surgery.
Donna
Hi Donna.
I can chime in on this one. I had no balance issues prior to surgery. My testing showed that the tumor had almost no impact on my vestibular nerve. Right after surgery, I was plagued by some double vision and lots of light headedness. Now, coming up on 4 weeks post-op, I can tell you that I still get light headed when turning my head, especially to the right. I have some difficulty tracking with my eyes when turning my head to the right, but I do well turning to the left. I get really light headed when I move my head up and down, but luckily that isn't necessary very often.
As far as balance goes, it's been getting better if I'm in a well lit area. I haven't stepped off any curbs lately, and have never actually fallen. I find the balance problems more of an issue at night than during the day, like when getting up to use the bathroom. I initially have to steady myself by holding on the the foot board of the bed. I haven't noticed much improvement in that, but it is easy enough to live with.
I have started to drive short distances, but it's still a challenge when trying to pull out into traffic (looking quickly left and right). Overall, it's a small price to pay to be rid of the tumor. I consider myself 90 percent of normal now, and that's not bad for less than a month out of surgery.
I never needed a cane or walker, but some people do. Everyone is different, so nobody can tell you how your balance will be after surgery.
Ernie
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Donna ~
Unfortunately, an AN patient with almost any vestibular function prior to surgery will have balance deficits after surgery due to the cutting of the vestibular nerve. In many cases, vestibular rehabilitation may be beneficial. My balance nerve had been so severely compromised by the growing tumor that my brain had compensated for the change in input and, although my balance was negatively affected prior to my surgery, I regained most of my normal balance functions within six months of the surgery. To be honest, that took some work on my part.
I experienced a rather severe loss of taste prior to my surgery and lost 30+ pounds within 6 months, mostly due to not eating enough. Fortunately, my sense of taste returned almost immediately after the surgery. ...the weight didn't. Let me add the necessary caveat that every AN patient is unique. Although we all have similar symptoms (for better or worse) each AN post-op patient will have a slightly different experience with their surgery and recovery. I trust that yours will be positive, no matter the approach you ultimately choose to address your AN.
Jim
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Thanks so much for your posts, you have been very helpful!
--Donna
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You are lucky to live near Philly to have available to you a radiosurgery center to offer therapy that would not result in the sometimes, disfiguring consequences of invasive surgery. Here is the information from the ana.org website. Certainly worth a second opinion!
Dr. David Andrews, Assoc. Professor of Neurosurgery at Thomas Jefferson University, and Director of Stereotactic Radiosurgery at Jefferson Hospital for the Neurosciences. In 1994, Dr. Andrews established the first world installation of a head dedicated LINAC. Patients describe him as "a very sincere man honestly working to benefit his patients". FSR is performed in 5 consecutive weeks of low dose radiation (Monday-Friday, 2 Gy per session) with a dedicated LINAC. Gamma Knife is also available. He claims to be "among the most experienced clinicians in the world in the treatment of ANs with fractionated stereotactic radiotherapy." They have now treated 800 patients with FSR (not all of them ANs).
Thomas Jefferson Department of Neurosurgery
909 Walnut Street Third Floor
Philadelphia PA 19107