ANA Discussion Forum
General Category => AN Issues => Topic started by: kss4luck on March 01, 2007, 10:50:25 pm
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Hi,
I'm new to the board, I have an AN it's 2.1 cm. I've seen the ENT and the ear surgeon. The next step is the neurosurgeon on Tuesday. I've been reading the posts to see what to expect. I'm glad to find this site and would like to have any help or insight on what to expect. Some people say I'll be in the hospital 2 days my surgeon said 7-10. how long off work seems to be up in the air too from 1 week to 3 months.
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Hi there...
Sorry about your diagnosis but welcome to our unique club.
You appear to have already decided to opt for invasive surgery and as your AN is 2.1 cm I just wondered if you had considered the other options of 'wait and watch' and stereotactic radiosurgery?
Please be sure to undertake thorough research before making your final treatment choice. It is essential to find a medical team who have a proven track record in specifically dealing with acoustic neuromas.
Whatever your final decision make sure that it is YOUR choice and best wishes for an ultimate successful outcome.
Best Regards
Derek
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If you have surgery you will probably be in the hospital around 4-5 days, unless you have complications. Your tumor is not large and you will be fine. We are happy to have your visits here. Keep us updated.
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I too wish you the best of luck with your treatment and recovery. I'm sorry you have to go through this, but you've found the right place for information, encouragement and support.
Be sure your team is very experienced and that you are comfortable with the information they are telling you. This is, afterall, microsurgery on your head! That's about as big a deal as you can get, I think. That and heart surgery.
Take care,
Sue in Vancouver USA
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I extend the same "well wishes" as my fellow AN'ers. You will find great info on this site, warm and caring people to share your experience with and lots of support. Glad you wrote and look forward to hearing from you again. Karen
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Hi kss4luck:
Welcome.......I am almost 3 years post op and doing just fine.
Good luck to you!!
Kathy
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Thanks so much for the morale support. God bless you all and thanks for your help.
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Hi Everyone, I met with the Neurologist today and he wasnt nearly as sweet. smiled the whole time but told me all the terrible stuff that can happen. paralysis stroke bleeding out yuck yuck yuck . I like my ear surgeon better, he seemed to like my questions. this surgeon did say they have a 17% of no facial paralysis. thats better than the 47% I found online.
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I just joined tonight and have read over the information, I should have looked this site up months ago. I had my AN tumor surgically removed early June 2006. I was in for 5 days and then back in for two additional surgeries to repair a cerebrospinal fluid leak as well as a gold weight placed in my eye. I was out of work for 9 weeks and experienced total hearing loss and paralysis on the side of my face where the tumor was removed. I was not expecting the additional surgeries and complications (meningitis) but I kept a positive attitude and had lots of people praying for me. I was back to work at 9 weeks and back to my martial arts training. I experienced balance loss but that did not stop me from testing on my next rank in taekwondo by October and passing. I am still recovering (facial paralysis and double vision) but I am so blessed that I am healthy and staying strong. I have another MRI scheduled later this month to see how things are going. Stay positive and listen to your doctors. My prayers are with you!
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Wow TP my prayers are with you too. I'm so proud you went on with exercise and didnt let this slow you down. keep on kicking!!
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TP:
Welcome and congratulations on your recovery and great attitude. I like your style. 'Don't be a stranger'. :)
Jim
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Sorry to hear about your diagnosis, but it's not the end of the world. My hospital stay was 5 days. 1 in ICU and 4 in a regular room. I was back to work in 3 weeks, and driving in 4. My balance came back pretty much 100% except when I'm in the dark. Vision is the primary sense that takes over when the inner ear balance system is compromised. I'm a skier and cyclist and back to doing those with no problems. Go to a surgeon that has done a ton of these to give yourself the best odds of a fast recovery. Good Luck.
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Hi TP WOW great attitude...keep on kicking!!
Do you do any tai chi? I know it's suppose to help w/ balance.
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Mainly taekwondo but we do several other martial arts training. I have been in it for 10 years and I believe the training is what help me recover as quickly as I did. I don't spare anymore, i think I will give my head a few more years to heal before I start getting kicked again. I just wish my face and eye (double vision) were better but can't control that, it appears several folks are in the same boat. I wish I had found this website before now. I am very inpatient and thought my face and eye would be better by now but it looks like I have a ways to go. Thank you for your note!
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TP, you sound similar to me. I'm back in pretty good shape except for my facial paralysis and numbness. I'm 18 months post-op (as of March 6) and my face has improved, but it is amazingly slow.
Kiss4luck, good luck to you. In general it seems the smaller your tumor is the less likely you are to end up with facial paralysis. It's good to read this forum to get an idea of what happened with other people. It sort of gives you some ideas as far as your own treatment and recovery may go. I think it's good that your doctor is telling you about what "may" happen. How many AN surgeries has done? It's important to get a doctor that has dealt with this a lot.
Jean
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Two items..wow what a story, and great attitude about it,,no doubt it has helped in your recovery, and to our new newbe,,,remember, you do not need to be in any rush...read read read,,this site has lots of info and you have I assume plenty of time...(exception is if pressing on your brain stem,,and even then you have a little time). I suggest a least one second opinion and the possibility of radiation therapy...it has been proven to be very effective and much less invasive..especially if you are concerned about missing work..check with the cyberknifesupport.org site...you will learn lots about the different methods and the doctors volunteer their time answering questions etc...they are supportive and non biased towards treatment although I would have to say Dr. Medbery is somewhat conservative regarding physical surgery.....read up, hang in there and keep in touch.
Ceeceek
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Hi There
I pretty much agree with ceeceek about taking time to look into CK or GK options since thay are much less disruptive to life and career since it is possible to return back to normal routine within a few days after treatment . You may already have decided to opt for surgery and if you have I respect your choice and wish you the very best of luck .
Regards Kat
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I am so impressed with you guys that had tumors removed years ago and you are supporting this group. This is very informative.
I have a question to those of you that have experienced eye problems. I wear glasses but have black tape on my left side of my glasses which is over my bad eye (double vision with gold weight implant) as oppose to wearing a black patch. My dr told me that after at least one year from my surgery if my double vision is not better they can operate and fix my eye. I see my eye dr tomorrow and will be discussing my future options with him. But if anyone has had this type of corrective eye surgery, would be interested in the procedure and if your eye is back to normal. I can live with my face paralysis (pain at times) but my eye is useless until I can see straight.
Background info: 6/5/06 AN tumor removed. My tumor was large, 4+ cmm and had complications (menigitis, home pic line and lumbar drain as well as two (6/21/06 and 7/12/06) additional surgeries to repair a CSF leak). Immediately after my tumor removal, I had double vision, obviously total loss of hearing but had pretty much lost that before my surgery but i did improve in my senses with smell and taste. Did anyone experience an improvement in their other senses? My tumor was on my brain stem pressing against my spinal cord and had been treated for what they thought was a neck injury for about 3 months, lived with pain in my neck and arm for another 3 months but when my hearing was deteriorating last spring and I was started to get head aches that is when they sent me for a brain MRI and within less than three weeks had my surgery.
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Brucifer- you always amaze me with your medical knowledge. And TP that is awesome about your Taikwondo!. Okay now onto our original poster KSS4LUCK- I ended up doing Cyber knife treatment at Stanford- this was after 3 surgeons including the head of ENT at Stanford told me surgery was the best option. I think for some surgery is the way to go, but for me I was kicking and screaming. After the third opinion I went ahead and scheduled surgery. The next day I checked this website and found three postings (mark, brucifer and phyllis ) suggesting I give it one last shot and research radiation as an option. I am so glad I did... CK turn out to be the EASIEST thing I have ever done medical- I can't rave enough about it. So while the research is exhausting- you do have a benign condition so you can have time to research it. Know for radiation you will have to go outside the nornal ENT cycle as most ENT's are biased towards surgery. Having said that, if you do opt for surgery make sure you go wtih someone who does a ton of these things- this website is an amazing resource is you can pace yourself and read through all the postings. Take care, good luck and keep us up to date with your progress... Annie