ANA Discussion Forum
Archive => Archives => Topic started by: george on June 15, 2005, 06:48:11 am
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I've JUST been diagnosed with this problem, and I'm having a hard time getting answers to my questions.
One problem is that I have a vacation planned and the doctors say, "Go on vacation and we we're worry about it when you come back." I have an appointment for July 14th.
But I would like some answers now and I can't get the doctors to call me.
My tumor is small and I've already lost A LOT of hearing in my right ear. The ringing is real bad.
I've been checking out these discussion boards and it is scaring me to death. There are stories about people who can't drive for two years after the operation and things like that.
The problem is that I am very active: caving, scuba diving, mountain biking, hiking. Will I still be able to do these things after the operation? Will I be able to do any of these things? I'm particularly concerned about the diving. But the driving also worries me--am I not going to be able to drive for two years?
Anyway, I'm just looking for some answers.
That's all.
george
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Hi, My recommendation is to be sure to check out Cyberknife before you commit to surgery. I too was resigned to have surgery and the more I read the more I didn't like the idea. I started doing the research into radiosurgery and am convinced that is the way to go. I am now scheduled next month for Cyberknife treatment at Stanford.
Good luck and do your research!
Karen
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Hi; I am 9-months post-op, and have done very, very well every since surgery.
Because of the size of my tumor (4cm) surgery was pretty much my only option; though after doing lots of research I would have chosen it, anyway. With radiosurgical treatments, if there is future re-growth surgery becomes more difficult, as radio treatments damage surrounding healthy tissues. Also, there is no data beyond 10 years on theses treatments. However, everyone has a right to evaluate and choose whatever option they wish. I had an extremely successful surgery; every bit of my tumor was removed and I had no facial nerve damage at all. I did lose the hearing in one ear, but it was almost gone anyway.
Yes, there is a lot of scary information on the internet. But keep looking; there are many, many success stories as well. Try to imagine that those of us who are doing great are out rock-climbing, etc., too much to sit at our computers all that much!
I, too, have always been a very active person. My physical condition and enjoyment of challenging myself have been creditted with playing a large part in my "phenomenal" recovery. A positive mental attitude, loving and supportive family & friends, and excellent doctors are also big factors.
Generally, there is no huge rush to treatment as these tumors grow very slowly. How large is yours? Of course, this diagnosis is quite stunning and waiting for answers is very difficult. I waited 10 weeks between diagnosis and surgery, and I spent that time organizing my home/family/work situations for my absence as well as hiking, running, and basically "training" for the upcoming ordeal.
A doctor who does not provide you with information or makes you wait a long time for answers would raise my eyebrows; insist on a response or find someone else.
To answer your questions regarding post-surgical timeframes, in my case things went something like this:
5 days-home from hospital
2 weeks-4 mile walk, working part-time, back to caring for my horses
3 weeks-driving, ballet class (yup, that's what I said!)
4 weeks-mountain hiking
7 weeks-putting on Thanksgiving Dinner for my extended inlaws (you have no idea how much this counts for!!)
Good luck, stay positive, and keep exercising. We'll stay in touch!
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George
If you have a good ear to compensate, in time you may very well be able to do those activities again.
I would take your vacation and enjoy it as much as you can. Typically, ANs grow only about 1 mm. in a year.
Personally; I'm not a FSR advocate but might consider GK. To me, however, with the reported record of House Ear Institute and mid-fossa surgery, that would be my main interest to be sure the AN is gone and not just therapied. FSR is therapy, GK is radiosurgery and microsurgery is surgery. Therapy does not mean a disappearance of the tumor but cessation of growth with hopes of it's death.
Russ
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Hi George,
I am 33, and just had my second AN surgery almost 6 weeks ago. I looked into radiation therapy this time also but went with surgery again. For me it was definitely the right choice. Everyone has a different experience but i want to give you a little bit of mine:
surgery on Thursday (translab)
went home on Saturday
started walking short bits immediately
at 5 weeks i went back to the gym, although still limited with amount of weight i can lift(dr. doesn't want me to hold breath or strain too hard yet)
Today is six weeks since my surgery and i feel great. My left side has compensated for my right as far as balance goes and i am hoping to get my BAHA the end of the summer to help my hearing.
There are good outcomes from surgery as well as radiation.
oh, by the way, i went on a vacation before my surgery which postponed it about 6 weeks...
good luck!
jennifer
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George, If your tumor is small you have time to catch your breath and research your options. You may be a canidate for watch and wait. I'm a 51 year old male and was diagnosed on July 1, 2004 with a 2.2cm tumor. After a month of seeing doctors and researching my options I decided to have Translab surgery to remove the tumor. I had a vacation scheduled in Sedona AZ in October 2004 and my doctor was comfortable with performing the surgery after my vacation. I spent the week prior to surgery hiking in the hills and mountains in North Central Arizona and it was the best presurgery routine I could have done. My surgery was the Wednesday after my return. I was out of the hospital on Saturday, walking around my block on Sunday, driving short distances 8 days post surgery. I'm now 8 month post surgery and not looking back. Wd have had a wonderful spring in Chicago and I've done a lot of bike riding. Even with my balance nerve removed my body had compensated and bicycling or hiking has not been a problem. Balance has only been an issue when I go from very light spaces to very dark spaces quickly or have to navagate narrow spaces on my bike. I hope this answer some life both pre and post AN surgery questions.
Dave Skaja
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George, I am 5 weeks post-op and doing great! I just posted my story yesterday. Best of luck to you!
You can ready my story here:
http://anausa.org/forum/index.php?topic=224.0
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hi george!
i feel your pain! i remember when i was first dx'd i was freaking myself out reading about all the negative side effects from peoples surgeries. but have no (ok..have less) fear..there are positive outcomes from surgery. i thankfully am one of them. since it seems to be a timeline sorta subject....
surgery on thursday
icu until friday evening
discharged from hosp on sunday
mariners/angels baseball game on monday (no joke..was out of it, but i was there!!)
another m's game on tuesday
hollywood and santa monica on wednesday
more shopping on thursday
staples and stitches out on friday, and flew home (ok...that sucked)
3 weeks driving
6 weeks, running, playing softball, working full time and feeling great
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Hey George...
I'm right there with Kristen-I had an 8mm left side AN removed via retrosigmoid May 2004 in Seattle by Dr Mangham/Dr Steege. I feel great. Didn't research how others felt prior to surgery because I believe all people heal differently. I had extreme balance issues prior to surgery, no hearing loss-just tinnitus.
From surgery I went to neuro ICU for 24 hours, neuro floor for 3 days, then home. Started walking immediately, drove within two weeks of returning home, kayaked (on flat water and practiced rolling) 1 month after going home. I spent all last winter skiing and hiking- even got in a day of whitewater kayaking before the snow fell.
There are lots of positive outcomes...choose your path, then plan your goals. I wish you all the best.
Have a lovely vacation...you deserve it!
Ciao.
Rory
littlemissrory@hotmail.com
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Hmm...I think the Mariners deserve some credit for getting Kristen out there so fast! You must be a die-hard fan! The first thing that got me on my toes as soon as I got home from the hospital was my daughters' pony collicced (translation: really sick pony). I was in the barn mixing meds and giving instructions; left kids with him but checked myself every 1/2 hr. The walk to the barn became my greatest immediate rehab therapy. No hot dogs and beer, though!!
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Hey everybody!!
THANKS for sending all those posts. They've done A LOT to calm me down, and I really needed it. I've also found a couple of other people to talk to (who had the surgery), and that has been a big help.
Anyway, I've upped my vacation from two weeks to three weeks and I'm heading to the FL Keys tomrrow to dip a toe or two in salt water. I'll deal with the tumor when I get back.
But THANKS again! I'll let you know how in turns out.
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My surgery was Mar 28th.I was home in 4 days.I'm a musician.I was able to play in a couple of weeks.My only problem is CSF leakage,which hasnt been stopped yet.Mangham ans Steege were my surgeons. I would think your age and physical condition will be an important consideration.No problems with driving only the leakage.
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same here, I was out of the hospital and feeling great in 2 days.
CSF surgery, was harder it was 1 week later and it took me a few weeks to get back into it.
two months out I was doing most everything. I did translab surgery for my 2cmX2cmx2cm tumor.
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kim, ha! yes, it's a sick and sad addiction i have w/ the mariner's! to tell the truth, i looked at their schedule to see when they were playing aneheim and scheduled my surgery around it. sad, sad, sad. my parents had front row seats for the monday game. i didn't think beforehand that i would be up to going to the game at all, in fact, i thought i would still be in the hospital on monday. so, anyway, they put my sister and i up in a super super awesome hotel w/ down comforters on the bed! but....no cable (what is it about LA and no cable?!) so we had to watch the game from the lounge area. we could see the lights of the stadium through the lounge windows and it took about 1 inning before we decided that it was ridiculous to stay there, so we took a cab to the field and spent $12 and went and tapped on my moms shoulder to tell her to get out of our seats!! i was on a lot of drugs and in some sort of spirit world, but felt great and will never forget it!
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George,
I am almost eight months post op, 36yr old female and also was extremely active. My best advice is to soak in all the information you can and do not only look at the percentages - they mean nothing, you can be 99% likely not to experience a side effect, it means nothing if you are that 1%. Have a positive attitude going in, no matter which route you take, but be prepared so you do not look back and say "if I would have known". I have had a few surprises and many setbacks. I think some days that everything that could have gone against me, has. I also feel alot of resentment toward my doctors. I am a strong person and feel that if I had prepared better, then maybe I would handle things better. Truth is, there are no guarantees and it comes down to what the individual can or can not live with. If you can not live with the thought of having eye problems, balance problems or persistent headaches (although chances are small that you will), then seriously look at other options than surgery. Becuase there is no going back once you make a decision. Also, look at the oddball side affects, I have lost all my taste, have excess salivation that makes me extremely sick and I am beginning to wonder what it was like to have a day that I could even consider doing any type of activity let alone something active - gardening, running, playing volleyball or softball. I was assured by my doctor that i would return to all of this within 6 months most likely. I played the odds and everyone is now sorry. I am a casualty of medical uncertainty.
I do not want to scare you, just help prepare you. Only you and your doctors know your specifics. Research every option and get a second opinion. I based my decision to have surgery on something my doctor actually said, that I was so active and such a go getter, that if I didn't have the tumor removed, that I probably would worry and not be satisfied. It made sense to me then, now I feel like a fool!
Please contact me if you have any specific questions I can help with.
Best of Luck in your decsion - Take the Vacation unless the doctor says you can not wait!!!!!
Debbie
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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!
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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!
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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.
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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
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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
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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.
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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).
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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.