ANA Discussion Forum
Archive => Archives => Topic started by: chrissmom on May 02, 2006, 12:41:58 pm
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Hi, I'm Chris's mom. Chris is 21 and he is my son. He is a college student and he was just diagnosed with a large acoustic neuroma
(5 cm). I'm worried. He has been referred to a Dr. in Pittsburgh who does 1 or 2 of these operations weekly. I'd really like to know what you have experienced with your surgeries. Christopher has completely lost his hearing in one ear and now experiences balance problems. He surprisingly does not have any headaches. We had no idea he had this and he has probably had it for years and thought this was normal. We are devasted by this news and grateful to find this support group. Anything you can tell me about your surgery would help.
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Sorry to hear about your son, but welcome to our group ... there are a great bunch of people here! ;D ;D
Get a second opinion at http://www.houseearclinic.com/acousticneuroma.htm . free call and you mail them an MRI to look at (they do 3/4 of these a day, they have a whole floor of the hospital for AN's)
I too had no headaches, and with a 4cm .. and did get sore necks a lot, and they are gone since my surgery! I do have right side facial paralysis, but its getting better all the time .. plan on 1 year recovery ..(some are better/some are worst)
Think about a BAHA , hearing aid ... it does help. especially in nosy or social situations ..
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Hi, I'm Mike   I had a 5cm. tumor removed on 12-30-05. I am 50 years old. I had my surgery done at Ohio State Medical University in Columbus Ohio. I was in the hospital 5 days. Stitches removed at 10 days. I had partial facial paralysis for roughly 5 weeks (left side) My main issues now are a balance problem and feeling drunk/dissy alot. My taste is off also. I do drive,but not at night much. Hearing in a social setting is very trying (any where there is background noise) I understand you are devastated. I about dropped the phone the day I was told I had a tumor and would be totally deaf in my left ear. Human beings are very adaptable creatures. It is tramatic, but not the end of the world. Life goes on. Be thankful that 99.9% of AN'S are not cancerous. THINK POSITIVE!
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With larger tumors it's extremely important that Chris's treating doctors have vast experience with the treatment of AN to help ensure the best possible outcome for your son.  .  Many Doctor's by title or medical degree  are qualified to treat, but may not have the experience that is needed. A medical team with extensive experience is critical to your best chance for a positive outcome.  I didn't have a medical team experienced in the treatment of AN's and was treated for a 6cm tumor on an emergency basis.  I don't want Chris or anyone else to follow  in my foot steps.
I didn't have headache prior to treatment either from the tumor.  Shortly before discovery of the tumor I had headaches from a complication of having a large tumor (hydrocephalus) which was sucessfully treated.
If I can be of any help, please feel free to email me.  Know that both of you will be in our thoughts and prayers.  I know how devastating it is to receive the news, especially when the tumor is so large, but the good news is that it's treatable.  Take care and please keep us updated.
Best to you
Chet
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Hi Chrissmom,
My daughter was in college at the University of Delaware last year as a sophomore. She was diagnosed in February 2005 with a 5cm AN. At the time she was 19. I know what you are going through it is so scary when you first find out. We live in Houston and saw 3 teams of surgeons down here and we decided to go to the House Clinic in California. She was treated by Drs. Friedman and Schwartz. They had to leave a tiny piece because it was attached to the facial nerve and we didn't want them to sever the nerve. She came out with flying colors no facial nerve damage and we were home within two weeks. She has since had a year checkup and everything is looking great on the MRI.
The hardest part is meeting with all the doctors and trying to make a decision on where to have the surgery. We ended up at House because the surgeons we were sent to here said they did about 24 a year compared to House Clinic where they do a couple hundred a year. My daughter was upset at first about going out there without meeting the doctors beforehand. But once she met Dr Friedman and Schwartz the day before her surgery she felt good about us being there. Good Luck and we'll be praying for you. If your son would like to talk to someone around his age he is welcome to call Kara.
Here is my email address if you would like to contact me it's dlsdms@earthlink.com. We contacted a few people on this site before we made our decision and their information was very helpful to us. To talk to someone who has been through this before was very uplifting - because you come out of the doctors offices all tense and worried and just speaking with someone who has gone through this helps to ease your mind a bit.
Her story is on one of my previous posts and I can't remember what her screen name is on here because Kara has posted also. Please email me and we'll give you as much information as we can. It's not an easy road but it's not as bad as we expected and she's back at college and working and enjoying life with few bumps in the road.
Take care
Donna
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Thank you all for your support and help with Christopher's tumor. Chris' doctors both did fellowship work at House Institute and have written papers with the Dr.'s at House. His Doctors have an excellent reputation and do many, many of these surgeries. I will probably still contact House for a consult. I have the MRI's right now. I looked at them and wish I hadn't. Thank you all for your insight. I will keep reading and will be well-armed with questions when we visit the doctor. Thanks so much.
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Chrissmom - Please know that there is a ton of support, info and inspiration here for both you and Chris. My heart goes out to you.
If you look back through some of the threads, you will find a few AN patients around Chris' age and some of them also have contact info.
Stay positive, I am 8 years post op, living with Single sided deafness, some balance issues, but doing just fine!!
Keeping you in my thoughts and prayers and please feel free to contact anytime.
Very partial to the name Chris...it's my oldest (23) son's name
take care and sending a hug your way
Cheryl
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Funny Matti...My son is named Chris too!
Chris's is lucky to have a mom to be his advocate. I gained the most helpful information on this site and with the materials offered from this site. If you haven't requested them I encourage you to do so! My sis in law was my saviour before my surgery with questions to ask the doctor and they were echoed in the material I received from here.
I've seen many young people post and go I call it. They post when their diagnosed, post before treatment and sometimes are not heard from but once after because things went so well. Keeping your family in my prayers that Chris falls into that category! Know we are here to answer, listen, pray..whatever you need to get this through this.
All my best to you and your family!
Michelle
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Hi Mike, I also had my thing took out at OSU Med. Center. Who did the honors? [TOOK THE TUMOR OUT}
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Hey Chris's Mom,
I know how tramatic it must be with having one of your children diagnosed. My tumor was relatively small in comparison 1.75 cm and my recovery is going wonderfully with very little problems, BUT my ANA mentor (I joined a support group before the surgery) is a young man who had a tumor about the same size as your sons. He is two years in recovery and is doing great. He had some facial paralysis at first but recovered most of his facial function. He plays competitive ice hockey and is a senior manager at Sprint. Raises a family and although there is a problem with adapting to hearing in crowds, etc., his attitude keeps his life on track. If he can't avoid those things that bother him, he grins and bears it, knowing he will soon be away from the problem. His attitude really helped me get through my ordeal.
Keep a sense of humor and good luck on a successful outcome.
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Hi Chris' Mom,
Sending you and Chris and your family well wishes... although not a surgical AN patient, know that I am the 2nd sibling in my family to have a brain tumor... and know that your strength and courage as Chris' mom is to be commended. I know what my folks have gone through with 2 of us (my sister and myself) in the family with brain tumors but know that I understand their pain, their sadness, yet the love and strength they give me to move on with this AN journey. Hang in there.. and sending you hugs.
Phyllis
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Hello this is Tony calling from England
I saw your note and was sorry to hear of your problems
I am myself recovering from a series of operations on a similar sized tumour
I doubt very much your son will have similar experiences to me, but you do need to consider the possibility that your son maybe off work and recovering for a period of weeks or months.
It might make sense to prepare in advance just in case.
Its important that all the mundane, practical things in life are covered for him at this time
- so he can focus on getting well, post op.
It is a worrying time for you for sure but the recovery rates from this type of operation
are very good indeed these days, and you can help
wishing you all well
best regards
Tony
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Hi!
My name is Paul and my growth was reportedly 5cm x 5cm but looks much bigger on the MRI scans. You can see them for yourself on my latest post. I'm sorry to not have responded to your note sooner as I just didn't see this.
My monstor growth was removed on 9/21/2005. Like Chet, I too have had problems with c.s.f. build-up and had a shunt installed before the tumor resection.
I'd be happy to correspond with you and provide whatever information I have.
Take Care, Paul
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Hi Tony from England and welcome! BTW, my cheeky bloke is on this site in support of all of us.. where in England are you? He's in SE London! :)
Chris' mom, please hang in there... we're all here for ya! :)
Phyllis
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Hello Chris's mom. I am in Chris's group. I had a 5cm left-sided acoustic neuroma removed in 1998 when I was 23. They told me I most likely had the tumor at birth. I also completely lost my hearing on that side. As a result of the facial nerve being damaged I also have some level of facial paralysis. Before I can be of great help...I need you to answer some questions for me:
Is he having it removed surgically? If so when? Have they discussed nerve grafting options during surgery? How is his vision on the affected side? Please give me as much detail as you can so. Thanks
kjneuma
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Hi... i'm 18 now and had a 4.8 cm tumor removed 2/3/06. It takes me longer than it use to to do everything. The recovery is very slow, but it's getting better. I talk funny because one of my vocal cords is paralysed. So i have PT, OT, and speech therapy twice a week. I have dry eye because one of the tear ducts doesn't work, so I use Systane eyedrops. My eye doesn't close all the way, but almost. I don't have a gold weight in my eyelid like a lot of ANers do. I have to wear an eye patch (moisture chamber) at night when I sleep because of that. (All of this is on the right side... the side the tumor was on) I have facial paralysis on my right side, but the nerve wasn't cut so some of it should come back although none yet. The whole left side of my body feels asleep (a pins & needles sensation) It has more speed and coordination than the right side which is strange because the sensation in my right side feels normal, and i'm right handed. I use my left hand alot more than my right and i shouldn't because the more i use it the faster it'll come back. So i'm trying to use my right hand more. My handwriting is very slow and shaky. I was in the hospital for 5 weeks... mostly because i had rehab 6 hours a day everyday. I was 17 at the time. Well it's been 3 months and a week today since my surgery so I have a lot of time to get better. I don't think your son will have it this bad. Some people alot older than me don't have it this bad. I just got off the walker about 3 weeks ago and i'll need it again for far distances (like the mall) but haven't used it yet. When i go to the grocery store with my mom i push a cart and it helps alot. I wanna get the BAHA soon cause i've only heard good things about it.
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Thank you, Taylor. I really appreciate your story. You have a tremendous amount of courage. OT and PT do wonders and soon you'll be doing things the way you used to do them. You are young and nerves can regenerate but they regenerate slowly. So give it time and you'll do great.
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This is chrissmom. Thank you, all of you for your stories. They help me so much. I am so sad but know that I need to be strong. Chris will visit the surgeons on Monday. This appt. was moved up by the doctors. I feel that it is urgent now. He was just diagnosed a week ago. The ENT Dr. said that it would probably be translabyrinth but that would be up to the surgeons. They are excellent doctors and both worked at House.
I was unaware of the recovery time until Taylor told me her story. I am committed to carrying for him, though. I am a teacher and I am prepared to take off the rest of the school year to care for him (3 weeks) and then we have the summer. If necessary, I'll take off the next year as well. I'm interested in knowing how Kara is doing too. Donna, please post. What was her recovery time like. Chris seems very unsteady but I may be looking too closely now. Before, we just thought he was being a goofy kid. We had no idea what was going on. I never even heard of AN before and for a week now, it has been the only thing I have known. Thank you, for your support and prayers. I never needed it more.
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Thank you for the suggestions, Joef. They were most helpful.
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Dear ChrissMom
I wish good luck to chris , tell him everything would be fine , he woul emerge out of this more strong than ever , Here is what i feel about the whole thing ..The harder in life , the more I realize the impact of attitude on life. Attitude to me is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than success, than what other people think or say or do. It is more important than appearance, gift, or skill. It will make or break a company..a man's life ....a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past..We dont anticipate being sick ...we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the string we have, and that is our attitude. I am convinced that life is 10 percent what happens to me and 90 percent how I react to it. And so it is with you... we are in charge of our attitudes . What lies behind us and what lies before us are tiny matters compared to what lies within us.
Pejavar
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Wow, my 4cm "Timmy" sounds small compared to the previous responses!
Pre-diagnosis, I had perfect hearing (including perfect word discrimination) and no headaches. The MRI was ordered after a routine eye exam showed 20/20 yet I complained about problems with my right peripheral vision. I did have worsening balance but I thought that was due to pregnancy.
I had Translab and am now deaf. Recovery was tougher than anticipated but not impossible. Vestibular therapy helped alot. The biggest nuisance is tinnitus; My family's tired of repeating themselves and I can't stand missing most of the conversation. If there's background noise (such as the TV or stove fan), then forget it! The hardest part is facial paralysis and all the eye complications; My face hasn't twitched yet and I'm 15m post-op... very discouraging. It's not just humbling, it's downright humiliating sometimes!
The emotions can be hard to deal with, they're such a rollercoaster! But again, one can find benefits in every adversity. I would never ask for this "challenge" or wish it upon my worst enemy. But because of this stupid tumor, I have a stronger faith, more positive outlook, am more compassionate to others, and am grateful for the things I can do... like be alive to hug my kids.
Your son is very lucky to have you as an advocate! It's going to be a long road, hopefully without bumps and detours >)
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Chrissmom,
Sorry I didn't post sooner but I've been out of town. Kara recovered pretty quickly - she left the hospital on day 4 and on the fifth day we moved to a hotel in Santa Monica where she was able to sit outside the room and relax on the lounge chairs. Each day we saw an improvement and would leave to go out for an hour or two. She would become exhausted easily and would nap in the afternoon - but that was expected between the surgery and anaesthesia it takes time for your body to adjust. (I was told by one of the doctors we spoke with that it takes the body a month to fully recuperate for every hour you've been under anaesthesia - I don't know if that's true or not - but Karas operation lasted 12-13 hours) Before we came home from LA (we stayed there a total of 2 weeks) she walked the promenade in Santa Monica walked along Rodeo Drive, and walked along the pier in Santa Monica. It was hard at first because she felt like her balance was off and walking in crowds was a lot of work - she felt like everyone was coming at her it was hard for her to judge how far away they were.
Once we got home from LA each day she seemed to have more strength - but being tired seemed to be her biggest problem for months - even now I think she tires easier than before. But she is a year post op and she can definitely put in a full days work either at college or on the job. Kara had her operation last March and it took about 2 months to feel like herself and have energy - and then I think when she went back to college in September she realized she still wasn't 100% but each day she got stronger.
She had a little facial paralysis two weeks after and that started to get better at week 5 - I don't think that fully healed until sometime in the fall. Sometimes we didn't notice it - but then when we got pictures back we realized her smile was still really slanted but that has all healed. Her only problem now is a little dry eye which she sprays usually once a day other than that and SSD we feel as though the operation was a huge success especially for the size tumor she had.
I hope this helps if you need any more information let me know or you can email me or contact me by phone.
I'm thinking about you.
Donna
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Thanks, Donna. We have finally started down that road to surgery. He has had all his pre-op tests and I'm already fighting with the insurance company. He was to have shunt surgery today for hydrocephalus but that is now going to be Wed. We will probably need to wait a few weeks before they actually start the tumor surgery. You have been so helpful and supportive. I'll let you know how we are progressing.