ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: donna lee on January 24, 2007, 11:53:00 pm
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I'm a 50 y.o. female recently diagnosed with a 1.4cm acoustic neuroma. I have some high frequency hearing loss in my (L) ear, otherwise no other symptoms. I'm contemplating having another MRI in 6 months, but also anxious about further growth. The surgical complications are worrisome. I'd like to hear from others who have had surgery, so I can get a better idea of what to expect.
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Hi Donna,
Welcome to our little "Club Med". Sorry you had to join, but here you will find a lot of support and information. I would say, first of all, that you might not necessarily need to have microsurgery. It's in your best interest to look at all options open to you and certainly radiosurgery is an option. A lot of us have found that a surgeon will likely suggest surgery, because that's what he knows. It's not the only game in town, however. Do your research and find out what is available in your area regarding qualified, experienced AN surgeons and qualified, experienced radio surgery options such as Gamma Knife and Cyber Knife. There are a lot of surgical patients on the forum who will be happy to tell of their experience. And there are many of us who have opted for radiosurgery who will be happy to share our story as well. Also, you will find out that if you decide that surgery is what you want, then you can easily get a second opinion from the House Ear Clinic in Los Angeles. That is one of the top places for AN surgery and many on here have traveled to LA to go to that hospital. I'm sure others will be chiming in soon. I'm up late so I saw you first!
You don't "sound" like you are too stressed out about this and that's good, but I imagine you are to some extent and this is a great place where you will meet some very nice people who will help you with this sudden journey you find yourself on. Welcome to the forum.
What part of the country are you from?
Sue
Vancouver, USA
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Hi Donna,
welcome to this family of ours.
I agree with Sue, look at all options. You are well within the radiosurgery scope. Of course in the end you have to choose the route you feel the most comfortable with, you have that choice. Find experts in each treatment option and talk to them. Experience is very important.
We are all here to help and answer your questions if we can. You found a great place!
All the best
Lorenzo
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Welcome to the Tumor Freak club WAHOOOO! ;D
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Hey Donna Lee- welcome to the club albiet a crazy one. Not that I know much, I'm still a newbie but I have had 3 consultations now and am going in for a fourth as a final check. All three have recommended surgery of some kind, my fourth one is radiation and surgery. This industry is very biased towards surgery as it is the known event. You are in a position to really research this thing and make the best desicion for you. Although research can be emotionally exhausting, I do think it will make you feel better about your final desicion. I have approached this process by trying to find the least invasive procedure, only to be surrounded by surgical opinions. Consequently, I was pretty much resigned to going under the knife, but am making one last attempt to avoid it by seeing a surgeon who also does radiation. I don't know the position of your tumor, but your size from what little I know sounds like a pretty good candiate for either gamma knife or cyber knife. hope this helps- take care, Annie
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My wife just had translab surgery for a 1.9CM AN at House. She had Friedman and Schwartz. You are doing the right thing by checking all the options. We looked very closely at radiosurgery, but opted for microsurgery. Both are reasonble alternatives. House is truly world class. Do not go forward with either option until you are comfortable. Good luck!
Fred
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Hello, Donna.
Just a quick note of encouragement. Today is my 1-year anniversary following translab surgery and I am doing just fine. I do have total hearing loss on the AN side and a little of the drunken feeling when I move around, especially in the dark, but my life is back to normal otherwise. I work full-time and do everything that I did before surgery. I realize that I am very fortunate not to have experienced many of the difficulties others have, but I thought you might want to know that there are positive outcomes from AN treatments. Whatever your treatment choice, find the best physicians and get all of your questions answered. Once you make a decision, I believe you will find that it brings you a measure of peace.
All the best to you -
Sanddollar
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Making a decision is an incredibly liberating step. I still remember the moment when I decided to go to Stanford was the right way for me. I just so much clamer and stopped the 'manic' phase. It felt peaceful and and a great step forward. From then on, I just wanted to get on with it and go ahead!
Also, I agree with sanddollar, there are of course many many positive outcomes. In fact I bet there area lot more 'positive' outcomes that 'negative'. The 'positive' ones tend not to be on forums, in general. Actually, I don't really like the notion of positive and negative, it all depends so much one one perception.
Ciao, Lorenzo
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Hi Donna,
& welcome:
I agree with Sue - look into radiation.
I'm one of the unfortunate ones who had surgery with complications of
facial paralysis, & all the mess that goes along with it.
Even with the best of surgeons sometimes these things happen: my facial nerve did not respond when they
put the nerve sensor (don't know the name) on it prior to even tackling the tumor(only symptoms pre op
were tinnitus & decreased hearing).
I've only said this once before, but truth is, I would do radiation knowing what I know now
(hindsight is a beautiful thing).
You DO have options, look into them all: watch & wait, radiosurgery, microsurgery.
All the best Donna
(a fellow 50 year old - what a way to celebrate: with a tumor, ugh).
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Hi Donna,
Let me tell you ,,,,,,,
This site is a great resource. I have been also recently diagnosed with a whatever....2.8x2x2cm still officially waiting but beleived to be AN or facial nerve schwanomma....same difference as far as I am concerned, and where I was just as anxious and insane with worry, after reading all the post, getting quick replies from everyone etc. I feel much better, as well as better informed about what options I have available.
I unfortnatly do not have much info for you directly other than check check check allllllll your options and talk talk talk with everyone here. They are fabulous.
Ceeceek
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the surgery complications are worrisome, but happends more with larger AN's .
at your size, you have lots of options.. surgery or radiation .. is your hearing still not to bad?
welcome!
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the surgery complications are worrisome, but happends more with larger AN's .
at your size, you have lots of options.. surgery or radiation .. is your hearing still not to bad?
welcome!
Hi Joef,
Thanks for the encouraging words. My hearing loss at this point is not too bad, just some dulling on my L side. I have had this hearing loss for several years but didn't think much of it. I don't have any other symptoms. I'm considering having a repeat MRI in 6 months to check the rate of growth, as I explore all my options.
Donna
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Hello, Donna.
Just a quick note of encouragement. Today is my 1-year anniversary following translab surgery and I am doing just fine. I do have total hearing loss on the AN side and a little of the drunken feeling when I move around, especially in the dark, but my life is back to normal otherwise. I work full-time and do everything that I did before surgery. I realize that I am very fortunate not to have experienced many of the difficulties others have, but I thought you might want to know that there are positive outcomes from AN treatments. Whatever your treatment choice, find the best physicians and get all of your questions answered. Once you make a decision, I believe you will find that it brings you a measure of peace.
All the best to you -
Sanddollar
Hi Sandollar,
Thank you for the encouragement! It is nice to know that there is a positive outcome out there.
Donna
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HI Donna Lee and Welcome.
What part of the country are you located? Like everyone has said...research your options, met with the doctors, request the brochures from the ana as they are very informative. If you're not comfortable with a doctor go to another one. It took me three consults before I found someone I was comfortable with. You can send a copy of your mri and report to house for a second opinion as well as many of the radiosurgery places. If you need help finding contacts for either just let us know and someone will steer you in the right direction.
There have been many who have had their treatment and moved on as their outcomes were fabulous!
Ixta..love your batman! I used to drive a bat car until cheryl sent me my pirate princess plate so now I drive the pirate mobile!
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Hi Donna:
Welcome!!
Get a few radiation and surgical consults from the most experienced doctors you can find. Then, if it grows, you will be ready to make your decision and get on with it.
I had surgery in May '04 due to the location and size. I am the same as before surgery except I am deaf in the left and multi-tasking does not come as easy as it once did.
Are you in the USA? You and always post about doctor info......someone on here will probably know AN doctors in your area.
Good luck to you, Kathy
ps: does anyone know if a repeat MRI in three months is a reasonable request? just in case it is growing?? might be an option to let you relax a little Donna
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Donna:
Hi, and welcome to the discussion forum.
I can't add much to the good advice you've already received - the only kind we give here :) but I trust you'll do the research, not panic and eventually make an informed decision on how to address your AN tumor in a way that is most practical and comfortable for you.
Some folks freak out at the thought of microsurgery, which is understandable. Some just want 'that thing out of my head' and are almost eager to have surgery. If size permits, some AN patients opt for non-invasive radiation surgery (which isn't really surgery) as a way to kill the tumor and, hopefully, avoid some of the normal risks of microsurgery.
My AN was so large (see my signature) that surgery, quickly, was my only option. As I was deeply concerned with possible facial paralysis post-op as I had no facial or eye movement problems going in. My surgeon decided to remove only the parts of the tumor that weren't involved with facial nerves. He called it: 'de-bulking'. The surgery went fine. I was home in 4 days. Three months later I began a series of 26, short-term (20 minutes), low-dose radiation treatments specifically aimed at the remaining tumor and intended to kill it's DNA and prevent regrowth. They were tedious but otherwise uneventful. A follow-up MRI in December showed the beginnings of tumor necrosis. I'm hoping an MRI I have scheduled for late April will show further necrosis.
I mentioned all this to reassure you that you will have options in how you address this medical challenge. Surgery, radiation, 'watch-and-wait, whatever, it will be your choice. We stand ready to advise and certainly sympathize as well as to simply be good listeners for you.
Jim
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Nancy,
My wife is 50 and just diagnosed with AN.
She is seeing a surgeon on Tuesday.
Can you tell us about your experience and why you chose the treatment you did?
Her symptons were tinnitus and some dimeshed hearing in 1 ear.
She had a MRI for a hemangioma in her mouth and the AN was a incidental finding in the MRI results.
Thank Yoo
harrylewis01@yahoo.com
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Hi Donna and welcome to our very exclusive club.
I researched my options and chose surgery for my 1 x .6 x .7 cm tumor for a number of reasons. A. I just wanted the darn thing gone--I'm an instant gratification sort of person. B. I had a cousin in the LA area who could take care of me post-op. which meant having surgery at House Ear Institute--one of the best places in the world to have the surgery. C. I had pretty serviceable hearing and I wanted to try to save as much of it as possible.
I ended up losing all the hearing on the AN side and began having debilitating headaches 10 days post-op, which escalated during the next 6 months to unbearable daily migraines--with my surgeon 3000 miles away. I live in a very small town with limited health resources. My life was a nightmare for the next 3 years. I was unable to work and spent most of the time in bed. At about year 3 1/2 they started to taper off somewhat and I finally found a doc at a headache clinic 4 hours away who was able to give me some relief. I'm currently on 2 headache meds, sleep meds and 2 anti depressants. I'm able to work about 1/4 time and am currently fighting for my disability rights with social security.
I realize that I am an anomaly surgical case, but I made the best choice I could at the time. I most definitely do NOT fault my excellent surgical team, who managed to leave my facial nerve unfazed. They were as stumped as I was about the headaches.
Definitely research GK or CK as an option while your tumor is still small--I would have that second MRI at 4 months and again at 8 months.
Good luck with your decision and keep us posted!
Be well,
Capt Deb 8)
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Hi Harry: Don't know if you meant me Nancy, or one of the other Nancys, but I e-mailed you a response.
Best wishes, Nancy
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Donna:
Recently, I was diagnosed, or so I thought with an AN of about your same size. I went to to separate highly regarded surgeons with my MRI's without telling the other that I had gone. Both of them said that they did not think I had an AN, but more importantly, especailly with your situation, they both said that even if they thought that it was an AN, based upon my lack of symptoms, very minimal hearing loss, they would do nothing, and simply repeat the MRI in a couple of months. And, both of them also said that if treatment was necessary at that point, they would recommend radiation.
Both of these physicians were in NY, and only one of them does radiation (GK), which made me feel a lot better about my prospects, even if I had an AN.
Where are you located? You should certainly have a consult with a neurosurgeon, but make sure he has experience in AN's and do some research. There is plenty of information easily accessible on the web and the more knowledge you have, the better questions you can ask.
Good luck.
Evan
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Hi Donna!
As others have said, weigh all your options. I live in the Harrisburg, PA. area, and had my AN removed at John Hopkins in Baltimore. Another of the finest hospitals in the nation! I would suggest you look at their website and review their information on Acoustic Neuromas and the different ways to treat it. I found it excellent and quite helpful in giving me a handle on the subject to go and ask questions of my doctors about specifics on the surgeries and the possible side-effects, etc. Also, the website will give you excellent background on their staff of specialists who perform the treatment of such tumors. I'd be glad to share with you my experiences if so desired. In the meantime, i thought it would be best to suggest what to do first. I would not want to influence you in any way on making a choice. That is up to each individual who has an AN.
Good luck!
Frank
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Hi Donna,
I am a post surgery ANer (1/2005) and for over one year now I have been teaching yoga at our local fitness club and privately. I am deaf in my AN side, my headaches are minimal, recently have been diagnosed with nystagmus (consistent with AN) and all in all doing well. I can drive at night, but I have not done long distance only in-town. I have balance issues when it's dark, "fishbowl head" at times seems to be related to being over tired, but don't think there's any difference (balance I mean) with those that have chosen radiotherapy as once the nerve is compromised there is not much chance at recovery. Hope my story helps and I do think researching ALL options is a good idea as ultimately the decisiion is yours. There is no RIGHT decision here.
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I have actually decided to wait and observe, at least for now. I have another MRI scheduled in August which will be 6 months after my initial diagnosis, I didn't want to wait a year for another one. My head and neck surgeon agreed with my decision, said if it were him he would choose to wait considering the size. I am content with the choice I have made and most of the time don't even think about it.