Tell me about your experiences with large tumors

[chrissmom]

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.

[Joef]

Sorry to hear about your son, but welcome to our group ... there are a great bunch of people here! 
 
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 ..

[Mike123005]

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!

[Raydean]

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

[tumor mom]

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

[chrissmom]

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.

[matti]

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

[Battyp]

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

[thecakes]

  Hi Mike, I also had my thing took out at OSU Med. Center.  Who did the honors?  [TOOK THE TUMOR OUT}

[Road Trip Dale]

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.

[ppearl214]

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

[tony]

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

[Crazycat]

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

[ppearl214]

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

[kjneuma]

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