ANA Discussion Forum
Archive => Archives => Topic started by: Tina Hager on November 27, 2005, 06:10:36 pm
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Hello Everyone!!!!!
I have decided on surgery at the house clinic in Jan. 2006. My AN is around 2cm. I feel at peace about my decision. I have researched both. My decision was based on my age. Being 30 years old. I want this thing out of my head so I can move on with my life. For me I want it OUT!!!!! Gamma knife surgery did sound good but, not for me. Like everyone has said do your research and figure out what you are comfortable with. I did alot! as so have all of us! You all are so wonderful to share your stories. My concern is my profession. I own a high end hair salon here in Los Angeles. I have a huge clientele. They are all so supportive of me and will wait for my recovery! Dr.'s Friedman and Hitselberger at house will do the surgery. I totally trust these guys. The only thing Iam really worried about is what will I do on my downtime after. Can you tell me what life will be like after. I am also a gogogo type personality. I do not want to slow down too much. What is life like after? I love bike riding and surfing with my husband. I understand i will lose my hearing and balance. They will be doing the translab approach. I love my docs and trust them completely. Believe me, when I first found out I freaked out! Cried for a week. then I did research and met with the docs at house. This is all they deal with are AN"s. I still want to be me! Do you all feel the same way. I am the best in my field. I want to remain that. Any advice? Thank you all for sharing your stories. You are all so STRONG!! You all give me hope!. I am very positive! I try to only think positive and be around positive people. It does make a difference!. Remember the power of thought! I keep you all in my prayers! we all will beat this!! we are the string ones.
Take care and god bless,
Tina Hager
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Tina,
Glad you made your decision. One of the many things I've learned from this site is that EVERYONE's recovery is different. You'll need a lot of rest to promote recovery. Most people say their balance is good after 2- 2-1/2 months. I am not one of those, but dizziness preceded my surgery.
Stay active, but listen to your body. I'm only able to work 1/2 time after 3 months due to balance issues.
Kudos to you for being brave and doing the surgery!
Nan
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Hi Tina,
I am glad you have made your decision.I know it is very difficult but once I decided, I felt a relief.There are many of us with sucessful outcomes!!I had the translab approach to remove a 3cm An with complete removal and no facial damage. Having confidence in the team you have chosen means a lot. Your concerns with recovery are very real and justifiable.
Try to enjoy the holidays and then make preparations for the surgery. You have plenty of time to get things in order. I bought stuff like a hand held shower head, a shower chair,a few comfortable gowns that buttoned down the front to go over my bandage,lots of soup and quick fix food etc. Family and friends are very important during this time. I had a hard time letting people do me but we have to.
You will just have to listen to your body during the down time. I like to stay busy too and I had to slow down. Just enjoy the company of family and friends and time will pass quicker than you think.
I have heard many great things from the doctors you have chosen. I had surgery at Duke In Raliegh NC with a great team( Cunningham, Fukushima and McElveen) .
I pray continued peace for you, wisdom and guidance for your doctors and a full recovery! A positive outlook makes a world of difference.
Take care and keep us posted,
Lynn
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Hello Tina. If you are active stay active up until your surgery. I had a 2.2cm tumor removed in Oct. 2004 by Translab. Prior to that I had balance issues, nothing serious,something only I noticed. I stayed active, walking 3-4 miles a day. The week before my surgery I went to Sedona AZ with my girlfriend. We spent the week hiking in the hills and mountains in the area. I'm convinced all that hiking helped in my recovery. My surgery went well. I had outstanding doctors and nurses. I was home after 3 days in the hospital and walking around the block. I don't know about surfing, but this past summer I was biking 25-40 miles a day on the weekends. I never lost control or felt uncomfortable on the bike. ÂÂ
Good luck with your surgery.
Dave Skaja
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Hi Tina
At 27, I was riding a bike in 3 weeks and back to work in 4 weeks after translab. That was 1977 and somewhat antiquated procedures and no MRIs or Cat Scans as today. This is 2005 and no regrowth upon several MRIs.
This was but my experience, your balance compensation time will depend in part as to how much good balance function you lose.
At 2.0 cm, my guess is the AN is in the cerrobellopontine angle.
Best wishes. I trust you'll do fine at HEI!
Russ
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Hi Tina,
Glad to hear that you have made your decision. I also felt relief once I knew what direction I was going. As far as balance issues...I had hardly any loss pre surgery and total loss post. It is still a little hard for me but, its getting much, much better now. I dance a lot and I'm sure you can imagine how funny that looks. Have you ever watched a drunk try to have good rhythm? :D Anyway, it works for me. Darkened areas are the worst. I now have night lights in every room!!
Each one of us have similar and different recoveries. I have found that no one could have told me exactly how I would be after surgery because no one could have known. I think you will do just great. You have wonderful doctors, you are young, and you are very active. All of that really helps. The one thing I am sure of is that on the inside, how you think and how you perceive your world will not change much. I am still me...
Keep us posted along your journey. My thoughts and prayers are with you. Sherry
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Hi Tina,
Like everyone else, I'm wishing the best for you! I can identify with your concerns re your business. I own a small business and I'm also the primary financial provider for my family and often feel guilty when I take time off from work. Keep this in mind, YOU need to take care of yourself and it sounds like you have alot of friends to help you-LET THEM!
Secondly, no one ever said they wished they'd spent another day at work( vs time with family or friends).
Hang in there!
Sally
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Congratulations Tina,
I so glad you have made your decision. I think that is the hardest part of the journey. Dr. Hitselberger is a wonderful man. He really cares about the quality of a patients life. So my advise to you is to talk to him about what you want the outcome to be. (ex. facial paraliysis, hearing, etc...) Also remember to keep your head elevated for at least 10 days after the surgery. This will help with swelling.
As far as work.....take your time going back. If you feel you need to be there, become the receptionist for awhile. I would suggest they book your clients every other one for a while too. You don't want to become dizzy from standing all day. You can rest in between clients. That means sitting !!!!! Not standing. Being around your friends will help in your recovery. Just listen to your body and don't push yourself to hard. Remember it's brain surgery and it will need time to recover.
I will be looking for your outcome. Please say hello to your dr.'s for me. They did my mother Nov.3rd. The 81 year old with a 4.5 cm. You are in good hands.
Mary
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Tina,
Not an easy decision - and I am sure you will make the right one for you. My AN was 1.2 cm and I also was opting for surgery at the House Clinic - they are excellent and world renown. It was only after very strong encouragement from others on this site that I actually went and explored CK (CyberKnife). From two different doctors, I was encouraged to rule out radiation, which I did. It was only after scheduling surgery, and through strong encouragement from others that I actually decided I owed it to myself to do more research and get as many opinions as possible to make a well informed decision. Needless to say, I changed my mind (even canceling surgery I had scheduled!) and opted for CK.ÂÂ
Why the change??? I really needed my hearing for my profession, and CK was providing better odds of saving my current level of hearing (I only have a 30% loss). My AN was only 1.2 cm and other then Tinnitus, I have no other side effects, making me a great candidate. I really didn't want, nor could my business afford (I'm President to a small consulting firm) for me to be out for 6 - 8 weeks of recovery. And finally, I personally am a believer that surgery should be a last option (having had 6 surgeries in my life for a variety of problems, and having a son with a life long illness...I try to be diligent and explore all options - even Non-Western options :D). If you read some of my posts you will see I struggled with this dilemma, and finally opted for CK.
I just completed CK this week, and am happy with my choice. Best of luck to you - I would encourage you to meet with Docs who do all variety of procedures; considering all possible options. I am confident your final decision will be an excellent one!
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Hey Tina,
I haven't been on the board in a few weeks, and what do you know, but there's someone else with the last name 'Hager'! Cool!
Congrats on your decision - it brings peace!
Here's my story (briefly - hope it helps!
I had translab on November 7 to remove a 3cm AN. Surgery went smoothly, and the facial nerve was preserved. Perfect facial function immediately after surgery. Swelling weakened it some in the last few weeks, but I'm back to about 80% now. The doctors are confident I'll make the full recovery, and it sure seems like I'm heading that way.
The most difficult part of my recovery was recurrent eye trouble. The facial nerve controls tear ducts, among other things, and mine dried up on my surgery side. I had an eye infection, followed by terrible dryness that caused the cornea to crack. I admit it took me too long to seek treatment for these problems, but I finally went to my eye doctor two weeks ago, and she gave me over-the-counter drops that have made the problem very minimal.
My recovery has been pretty consistent - no relapses, gradual improvement almost daily, and the occasional 'leap' forward. Like you, I'm pretty active. I'm not yet back up to full speed, but I'm getting there. Balance problems were fairly minimal (For example, I never fell down), pain was manageable, and I felt mentally 'up to speed' in about two weeks or so. I'm a teacher, and I'm heading back to work after winter break, and I feel absolutely ready for it.
While you recover, have a number of different things around that occupy your time. I read a lot, went for short walks, watched the 'Godfather' series, etc.
Hope this helps! If you have any other questions, let me know!
Josh Hager
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Josh, glad to hear that you are doing well. I have been wondering about you. Sorry to hear about your eye. I've been dealing with some eye problems also. Got most of them under control now. Think I might have pink eye now. Must have gotten that from school. Oh the gifts we get from students. lol
I'm sure you are looking forward to being back in school. Going back has been a great help in my recovery. It forces you to do what you used to do. It also gets your mind on other things.
Jean
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Tina,
The hardest thing to do in this process is take a positive stand on either surgery, radiation treatment or watch. Once the decision is made - stick to it coz a positive frame of mind is important. You also need to get on with your life aqnd not worry about treatment types and everything that goes with it. Good on you for your decisiveness.
Larry
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Josh,
You have the positive approach to get through the outstanding issues. Glad to hear your progress.
Larry
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Hi Josh,
Glad to hear you are doing fantastic. Thanks for the info! I am now waiting on a response for my date. I just am ready to have this removed! Merry Christmas everyone!!!!!!!!!!
Tina Hager
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Hi Tina,
Glad to hear about your decison to have surgery,,,i had a 2 cm neuroma removed on May 27, 2005...i went in the hospital on a Friday and was released on Monday,,,i did not have any balance issues, at all. Uusally they say the room spins for a couple of days. The type of surgery i had was Retrosigmoid Approach. i had about 90% hearing loss prior to surgery and it is about the same now. All of my nerves 6th 7th 8th and 9th.. are fine.. no numbess, no loss of tearing in my eye. the only thing is my taste buds on my left side are a little off. i am 58 years old,,retired.. but i was back to playing golf in 6 weeks...
good luck
Ron
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Hi Ron,
Wow, you had a great surgical outcome, especially considering the size of the tumor. Perhaps you could share where and with whom you had the procedure, so those considering surgery in that area may seek out that team. :)
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Hi Tina,,,just saw your post on the web site....I had my surgery on May 27 2005...I had Retrosigmoid Approach..my tumor was about on the small side of middle...2.5 cm...My surgery was done by Dr Alan Boulous with the Albany Neuro group at Albany Medical Center College in Albany NY....excellent group,,people come from Boston to have it done...My ENT doctor was Dr Stephen Parnes...my surgery was about 9 hrs long,,which included 2 hrs to set up the Halo...Neuro Dr removed 70% of tumor first, then ENT Dr...removed the tumor from my ear...then the Neuro Dr Boulos PLANEED the rest of the tumor mircroscopically from the nerves..they took some fat from my back, and put that in where the tumor was,,,then glued it...to prevent Any Cerebal Spinal Leakage...the results were remarkable..usually the room spins for a few days,, not in my case..my only ordeal was the headaches which lasted a little over a month...was on Loritab,,2 pills every 4 hrs. AND Fioricet every 4 hrs 2 pills also...I would overlap so I was taking one or the other every 2 hrs...(had to drink warm Prune juice and stool softerners Avery am..) lol...other than that I only lost some taste buds,,not to bad..and not with everthing..on my left side....my first MRI...was great...they usually want you to have another mri in 6 months...and they told me to have it in ONE year..Dr Boulous told me that if I opted for Gamma knife Radiation, which would be ok...but if the tumor Started to regrow again,,then surgery would be VERY difficult because of the Scar Tissue created from the radiation...he would not be able to remove the tumor from the nerves,,so I opted for his advice and had surgery..
I have NO Facial paralysis,my biggest concern was losing the tearing in my eye,,,that didn't happen either,,i put my contacts in 2 days after surgery with no problem at all.. my balance is great,,was back to playing golf in 6 weeks..i only lost some of my taste buds on my left side..but not that bad...good luck....
Any question..
Email me please..
Ron Trischetta
scoop@nycap.rr.com
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Tina,
Congrats on doing the research and coming up with the best possible plan for you! As you will find out from reading all the responses, and then through your own experiences everyone is different- their recovery, recovery time, and outcome.
Positive attitude (which you seem to have mastered) is everything! I am very active- a skier (that is my profession), whitewater kayaker, runner- anything athletic...and I do all the same activities that I did before. I remained active until surgery (retrosigmiod May 2004), had full confidence in my amazing surgical team and took very good care of myself. I think these all played a hand in my positive outcome. I practiced rolling my kayak on the lake one month after leaving the hospital and two months after surgery I learned to surf.
Also, you mention not wanting to slow down. Keep in mind we need to slow-through the curve-in order to gain speed on the other side. Take it easy after surgery, allow your body that time to rest and heal...utilize the help from friends and family, you'll be happier for it in the long run. Besides...they NEED something to do since they can feel a bit helpless and scared- helping you makes them feel better.
Good luck on your journey...we'll be thinking of you. Take exceptional care of yourself.
Rory