Questions!

[dally1932]

I was able to drive after 6 weeks. I don't drive at night as much as I used to and fact try and avoid it as I don't feel I have the control I did before surgery. Yes, the discussion boards can scare one. My AN wasn't diagnosed as such and I didn't have the benefit of the discussion board. Everyone is different and each person handles their situation differently. I was off work for 6-7 weeks and returned to work. The one sided deafness was difficult to adjust to for me, as well as the balance issues. I went through 9 sessions of vestabular rehab but the therapist couldn't see an improvement. I feel the balance has improved somewhat in the three years since my surgery. I do believe that experience on the doctor's part is key. I have chronic head pain which has been diagnosed as nerve damage/intrapment. My pain doctor told me 2 weeks ago that neuropathic pain may take 3-8 years to go away. But the key I think is an experienced doctor. I did not have a ENT specialist assist with my surgery since it was not diagnosed as an AN and I feel that cost me. I also found out  after surgery that my surgical team does 3-5 AN surgeries per year. On the forum discussions I have seen indicates the surgeon should do 100 AN surgeries a year. So that may be part of my problems. I wish you well, do your research and ask your doctor the list of questions that are at circulating on Acoustic Neuroma and his treatment suggestion and why. I may not have done anything differently even if I had known it was an AN, but feel I would have been better prepared for life afterwards. Best of luck to you!

[sonshine]

George,

My advice to you is first of all go on your vacation and have a great time!  Secondly, if you have a doctor that won't give you his time to answer your questions, find another doctor!  Before making any definite decisions on what you are going to do, talk with many different doctors, not just one. Check all the options, surgery, radiosurgery, GK....everything.  Talk with lots of people, that have had different treatments.  Ask the doctors that you meet if they will give you names of patient's that they have treated so that you can contact them and find out first hand if they would go the same route again and how the felt about the doctor.  Unfortunately, most people find they have to travel many miles to get to a doctor that has a lot of experience with AN's.  Make the trip if you need to for the best treatment!  Remember you are worth it!

Remember this is a brain tumor, most people do have some type of side effect.  But it is cureable and you will get through it.  We all should be thankful that we live in a time that AN's are treatable and very few die from them today because they get treatment before it gets that far!  If you had to have a brain tumor, this is the type to have. 

I know you will get through this, have a wonderful vacation and if you have any other questions we are here!  All my best to you!

[David Wrubel]

George:

I'll try not to repeat what others have said. The time frames presented all can happen to you, and with quality treatment you increase the odds of a great outcome. I agree that you ought to check out the Middle Fossa surgical approach at House Ear Clinic, because the size of the tumor indicates that they might both remove it AND preserve hearing. All depends on where it is and lots of other variables, but they will evaluate your MRIs without charge if you contact them. A doctor will actually call you back. Any kind of radiation at a young age runs an unknown long term risk of....well, they don't know exactly what the long term risks are.

And I'll echo the person who suggested that you find another doctor if you're not getting the information you need and want. All neurosurgeons are not alike, and my best advice is to find a very experienced one who believes that he or she can deliver the outcome you want. The scary part is deciding on a course of treatment and who will run your case. Mortality rates are tiny, the surgery is way less painful and uncomfortable than I thought it would be, and the recovery time can be pretty quick, and pretty complete.

Good luck.

[matti]

I will be 7 years post-op on July 2nd. I had a 3.5 centimeter AN removed via middle fossa approach. I am as active if not more than I was before my surgery. My doctor's advice was to push myself as soon as I was released from the hospital, I credit that for bouncing back as quickly as I did. Within a couple of weeks, I was back to my normal routine, mom of two active boys. Do I have residual problems, you bet! But I in no way let them get me down.

If you are not getting the answers you need from your current doctor, then I would find another doctor who will. I made lists of questions for each pre-op and post-op appointment and would not leave unitl all my questions/concerns were answered. My doctor never had a problem with that.

When I walked in to my surgeons office the very first time, he said "if you are going to have a brain tumor, this is the kind you want, you are lucky". I vote with the others and think you should go on vacation.

Matti

[george]

Well, the bad news is that the diving in the Keys isn't the quality trip it used to be.  But I also hit the FL springs, which are REALLY nice and I went to the annual caving convention in Huntsville, AL (and got to do a couple of short caving trips).  The Keys problem is an environmental problem I think.

Back to business:  I went to see the surgeon in Morgantown yesterday and I learned a lot.  FINALLY, I got a doctor to talk to me. 

My tumor is very small--about 5 by 9 mm in size.  My surgeon said that these things sometimes stop growing on their own, and--because mine is so small--he said that we should wait a year and do another MRI. This will tell us if it is growing, how fast it is growing, and, if we use the Gamma Knife, it will tell us how effective that treatment will be. He said there are three options on cutting and has set up an appointment for me with another surgeon in August, and he has also set up an appointment with the Gamma Knife Guy in late July.

He says I should be able to do all the things I was doing before, including scuba diving, after the surgery; however, he said that I might not be able to do them so good. That's another reason he wants to wait a few years before cutting--because I'll be coming up on 60 and won't be doing all these things so good then anyway.

And he said I am in a small percent of the people in that my hearing "went bad" virtually overnight. Most people's take months or years, and they don't notice the effect.

I also discovered I have a caver friend who had the same problem a few years back. He was in the hospital for three or four days and was able to hike and climb by the end of three weeks. He has totally lost the hearing in that one ear, but he can still rock climb, mountaineer, downhill ski, hike, backpack, and cave, although he says he has some slight loss of balance with high-speed skiing and has to limit his caving to 18 hours or so.

That's about it.  I just wanted to bring everyone up to date because you all have been VERY good about answering my original post and saying positive things.

george

[Joy]

George,
Who is your neurosurgeon doctor in Morgantown?
I had J. Schmidt from Charleston and T. Fukushima from NC during the months July and August 2003.   I had the Gamma Knife done by B. Karlsson October 2004.  The only problem I had afterwards was the more of different sounds and increasing volume of tennitis as well as pain in my left temple and behind my left eye.

[tclark]

I was diagnosed in January of this year with a 1.9cm tumor.  I spoke with both a neurosurgeon and a "radiosurgeon".  I felt comfortable that I would have good outcomes with both.  I ultimately made the decision to have radiosurgery for the following reasons:

> My children (four under the age of 6) - I just couldn't imagine being able to care for them, especially if I had the 1% untoward affects from the surgery

> The neurosurgeon himself recommended radiosurgery for me.  With my limited symptoms (mild tinnitus, some hearing loss) and the size of the tumor, he felt that radiosurgery would be a better option for me.

>It doesn't bother me that the tumor is still in there (they are telling me it had probably been there for about 10 years already).  I just want it to stop growing and for my symptoms to not get any worse.

You are the best judge as to what you are comfortable with.  I had the procedure a couple of weeks ago (on a Friday), and went back to work Monday.  I had a headache over the weekend and I was tired.  At this point, although it is awfully early, I am very happy with the choice I made.  I understand that the radiosurgery would make future microsurgery difficult if the tumor keeps growing.  I will deal with that when the time comes, if it comes.  Good luck.  Enjoy your vacation!! (I went on vacation the week prior to the radiosurgery and enjoyed every minute of it.  I agree that a vacation prior to either procedure is a great therapy). 

[george]

Dr. Maxwell, or Maxfield, was the doctor I saw.

I can't remember the name of the other two doctors that I am seeing in the next few weeks, and that paperwork is at home.