AN Diagnosed on my left brain - inputs needed

[vthiru1]

Hello Everyone,

I have been getting recurring headaches since 1 month and the Neurologist adviced me to take the MRI scan. MRI results came last week and heard a dreadful news of my life - I have been diagnosed with the AN tumor, size 3 cms on my left brain. I was so upset over the weekend until I learned about this forum. I see that lot of people here has this medical condition and living happily after the treatments. I will breifly tellabout my symptoms - Only Headaches. Period, absolutely no other symptoms. My hearing on left ear is good, no -  nausea, double vision, balancing and ringing issues. Headaches come almost every day and goes off in 3-4 hrs(some times I take pain killers). I live in Salt lake city, utah, which has very good medical universities. My neurologist referred me to Neuro Surgeon - Doctor William Couldwell(Chairman of Neuro sciences department, univeristy of Utah) and he looked over my MRI and immediately said "this has to be removed, no second thinking". He said that due to the size of the tumor and it may cause serious issues, if not removed.  I also got some second consents from the Neuro Surgeons in India and they concur with Dr Couldwell. End of the story - My retrosigmoid surgery has been scheduled for November 19th and Dr Could well is going to be the surgeon. It's all happening so fast and its little hard for me to digest things. But am pretty confident now and positive to take up the surger. Please read through this and let me know, if I am going on a right direction. My hearing test is on this Friday and fingers crossed.

I have some open questions and If you can answer these that would be really great?

1) Have any of you know Dr William Couldwell before and his expereince in operating AN? I read through his profile online and patient reviews, looks like he is one of the best in the o****ry and am on the safe hands.

2) Why Am not gatting any other symptopms apart from the head aches? especially most the people with AN has hearing issues, but I have nothing of that sort. any inputs would be really heplful. Iam 31 years of age, phsically fit person, go to the gym daily and do lot of physical activities like playing basketball, hiking etc..

3) What are all teh precautionary measures i should take pre and post surgery?

4) Should i ask any other questions to my neuro surgeon before the surgery?

Thanks for reading through my story patiently.

Thanks,
Vivek

[Gloria Nailor]

Vivek - I am very sorry to hear you were diagnosed with an acoustic neuroma - all of us here understand exactly how you feel - It is so overwhelming when you are first diagnosed.  It sounds like you have found a surgeon that you feel comfortable with and trust.  I am from Vermont, so I am unfamiliar with your surgeon, has he/she said they have removed many acoustics ? I myself had a tumor just about the same size on my right side, I had it surgically removed in 2011. The hardest thing about these surgeries is that there can be a variety of side effects to deal with after surgery.  Some people come out of the surgery with very minimal problems, while others have deafness, facial nerve paralysis, balance issues and other symptoms also.  It all depends on how easily they can remove the tumor and hopefully not damage the surrounding nerves. The symptoms that people have before surgery that led to their diagnosis are different also, I had trouble walking in a straight line at times, I thought I was losing hearing in my right ear, I had a larger pupil in one eye and lifelong migraines.  I think your being so physically active and in shape will be a huge help in your recovery.  I hope you have some good friends and family that you can talk with and share your concerns, this is such a stressful time for you, it helps to talk to others.  I am glad you found ANA, it helps to read what others have been through, but it can also be frightening seeing what others have encountered, because like I said everyone's story is so different.  Everyone's recovery is different, some seem to bounce back quickers than others.  I can only speak for myself, I returned to work at 3 months post-op, I still tired easily for a few months after that, I am now deaf in that ear but adjusted quite easily to that.  I had a very severe right sided facial paralysis that has recovered somewhat over the past 2 years, I can now partially smile and move my eye brow up slightly, I am happy with the movement in my face that has come back, If I look off to the side while walking I become a bit off balance, I have come to terms with these problems over the past 2 years.  I suffered from depression before the surgery, so it did cause problems with my recovery, I was quite depressed for several months and up until early this summer I did not feel quite myself.  It can be a long recovery for some and a quicker recovery for others. I will be sending good thoughts your way for your upcoming surgery.  Don't be afraid to ask your surgeon anything you have concerns about. Good luck, let us know how you are doing in the next few weeks. Take care - Gloria from Vermont

[Nannybee]

Hi Vivek,
My AN was small enough that radio surgery was recommended for my treatment, so I can't speak on the pre and post op issues but I'm sure many others here will be able to help you.
As far as not having any symptoms, if you haven't already seen it, I suggest you watch the Mark Ruffalo interview on the ana homepage. He had no symptoms either.
Best of luck.

[vthiru1]

Thanks Gloria. These words really give me strength and confidence. I am talking to my freinds and colleagues here and they are really helpful to me.
Yes, my doctor has done these kind of surgeries before and he is currently the president elect for all americans neurosciences association. He did mention upfront that I would loose my hearing 100% on my left Ear, but he said he could preserve my facial nerve(am not sure though). Did they remove the Tumor completely for you or did they leave some behind?

[luke_simmo]

Hi Vivek,
I was in a similar situation: Diagnosed with a 3+ cm AN back in July, had surgery 1 month later. I am 34 years old and in pretty good shape, and I recovered extremely well (back at work part time after two weeks, feeling close to 100% after 4-5 weeks). I had the translab surgery so am now SSD.

The nurses will (should) brief you on all things to do to prepare for surgery, e.g. don't take ibuprofin 1 week prior. Personally, I found comfort in spending as much time with my family as possible prior to the surgery, as I knew I would be out of action for a few weeks.

It is surprising that you don't have ANY hearing loss -- my hearing loss was only minor but it was definitely there. Everyone is different.

Good luck!
Luke

[vthiru1]

Thanks Luke, good to hear your success story. Was there any impact to your facial nerve due to the surgery? I went to the ENT and did hearing test today and I already lost 4% on my left ear. In my case, they are still deciding on the surgery approach(translab or retro). fingers crossed. What are the other complications you faced after the surgery? Thanks so much for your time

[luke_simmo]

Regarding my facial nerve, I woke up from surgery with full control of my facial muscles -- so there was no damage to the nerves.

About two days after the surgery I woke up from a nap with significant facial weakness on my left side -- couldn't close my left eye, eating was difficult, etc. Luckily this only lasted about 12 hours -- could have been the result of post-surgery swelling.

So, you may experience some short-term facial weakness but it's very likely you won't have permanent damage (assuming your surgeon in experienced in these surgeries -- which it sounds like he is). It's a good sign that your surgeon told you he can preserve your facial nerves; my surgeon told me that the MRI gives him a pretty good indication of how close the tumor is to the nerves and therefore how likely nerve damage is.

Also, my surgeons said they rarely if ever leave any tumor behind with patients my age, so I doubt they will do that with you unless they need to in order to avoid nerve damage.

I didn't have any complications, just headaches for the first week or so. Also, my operation lasted 14 hours so I had a very sore neck and back. Luckily my wife gives good massages! Your surgery will likely be shorter than this because my tumor was very hard and full of blood vessels.

Let me know if you have any other questions.

Luke

[Gloria Nailor]

hello again - I asked the surgeon to leave behind a part of the tumor if it looked like the nerve would be totally damaged, I did not want a permanent facial paralysis, so he left behind what he called "2% of the tumor" - sometimes that small portion of the tumor will die because the blood supply to it is cut off, but unfortunately 2 years later my tumor started to regrow, so I chose to have gamma knife radiation this past July, I will not know for a few years though if it worked.  It sounds like you have a very good surgeon and are in good hands. You are in my thoughts, be well - Gloria

[vthiru1]

Thanks Gloria and Luke. I just have one more week from the surgery now. Little anxious, but more positive and confident now after reading lot of stories in the ANA forum and ofcourse the doctors. Please pray for my surgery and fast recovery.

[luke_simmo]

Good luck next week, Vivek! It's good to hear they scheduled you so quickly.

I'm interested to know if you and your doctors decided on a retrosigmoid or translab approach. And of course please let us know how the surgery goes when you are up to it.

[Gloria Nailor]

Good luck to you, I will send prayers your way.  Hopefully you won't be too stressed over the next week.  Let us know how all goes when you are feeling up to it. Be well.

[vthiru1]

Freinds, surgeons have decided to go with retrosigmoid approach and I am happy with whatever descion they make. Just 6 more days now and am ready for it. I am doing some walking eveyday just to feel fit and strong for the surgery.

[Gloria Nailor]

Good luck tomorrow, I am sending good thoughts and prayers your way.

[mesafinn]

Thinking of you with hope, affirmations, and great confidence!

Peace--

Patrick

[MDemisay]

Dear Vivek,

Even though I am late on the scene I wish you well you have an experienced surgeon that you seem to trust and you seem to be physically fit.  All                     you can do now is trust yourself and pray as many of us will be for your recovery. Many have been down the road you are about to embark on tomorrow. Welcome to the postsurgery recovery, may it go well for you !
Keep up your spirits by exercising slowly,  little by little. You may find that keeping us up to date on what is happening is helpful as well to relieve frustration. Post when you can. It is helpful to be on the ANA website. You have found a helpful group of people here.

I will pray for you tonight. Sleep well you have a big day ahead.

Mike