18 year old digagnosed today SURGERY UPDATE

[southjersey636]

Sorry to hear about your son but he will be ok and actually the younger you are the stronger your body usually is to recover faster.

I had my tumor diagnosed at 18 also and had sugeory 2 months after they found it at the University of Pennsylvania.  I was scared  at first but within a week of having it removed I was walking around and had a little bit of dizziness and fatigue but being that I was young I recovered within 3 weeks and was out hanging out with my friends etc..

Tell your son he isnt the first to be on this bad road and that I did things after surgeory I never thought I would like learn to ride a motorcycle etc.. Im now going on 25 and just get dizzy here and there which im gonna get checked out this Tuesday but other then that Im no different then anyone else other then I cant hear out of my left ear.

Any questions feel free to ask me.

[robynabc]

HI,

Thank you so much for your words of encouragement.  The fact that he is young helps us all think he will recover fairly fast.  I am glad you are doing well.  I don't know if your AN was as large as my son's but we are very grateful for the encouraging stories. 

[robinm]

Hi Robyn,

Be optimistic and just do what you have to do..everything will be taken care of..say hi to your son from me..I know how frustrating is to suffer from illness when one is still young (lot of self-image, appearance, relationship issues).. but still, he will be fine..In my case, I just have hearing loss on one side..and this doesn't make me much differnt than any of my peers..my prayers are with your family..thanks for the encouraging comment on mhy post too.

Robin

[meredith]

I went for 7 opinons before I could pick one and you need to at least get 3 I read what you posted about him. it depends on the risks and hearing lost. I went to House and Ear Dr Brackmon in east L.A. UCSF San Francisco and ended up with cyberknife at Stanford Ca Dr Adler. Good Luck

[kss4luck]

Hi Robynabc,
I can understand how scared you must be. This is an incredible site you will find help here. I just had my surgery 5/4 and I'm doing very well, I am walking 3 miles a day and I'm 51. I just want to let you know your family is in my prayers

[Zanybrainy]

Robynabc,  I'm the one who had Dr. Hegarty in the Springs. I had a 4cm tumor that was pushing on my brainstem.  Did your son have surgery yet?  I am 2 1/2 years out from surgery and I am doing wonderful. I can not say enough good about Dr. Hegarty.  He was very involved after surgery and all my after care has been excellent.  I still see him because he debulked my tumor so there is a slim chance it could reoccur.  He does not let any part of your recover go with out attention.  I had balance therapy for four months and a gold weight in my eyelid for a year.  He referred me to a wonderful plastic surgeon for that.  I always say I got the best treatment possible.  Hope you and your son are doing well. If he has had surgery, the best I can tell you is take one day at a time and he WILL get to the point that life is good!!! Blessings, Cath

[Samantha n Adrian]

Hi Robyn.  I am sorry to hear about your son.  I know how scared we were when we found out.  I was diagnosed with a 4cm AN 2 weeks ago and though I’m certain where I want to go for surgery, I still need to figure out with my insurance how to get there.  This forum taught me about House Ear Clinic in LA.  This organization is at the forefront of AN research and surgery and has been since the mid ‘60’s.  From what I’ve read, they have performed the most AN surgeries in the country.  I sent them a CD of my MRI and they did a phone consult.  I spoke to Dr. Luxford and I missed Dr. Schwarz’s phone call one evening and learned that he had a death in the family the next day, so I am awaiting his call as soon as he’s back.  Friday I requested that Dr. Luxford call my girlfriend, Sam, so she can get a feel for the Drs. And yesterday morning, 9am my time 6am LA time the phone rang and it was Dr. Luxford. It was totally unexpected especially on a Saturday morning.  Sam slept in as we needed it after the past 2 weeks of stress and worry, and he said he would call back.  At about noon the phone rang and it was him.  If I had even a shred of doubt for using House I think that ended it all right there and for me, sealed-the-deal as much as it could given that there are so many aspects of insurance and logistics still left to workout.

I know how scared and your son must be right now.  This forum has helped turn fear into education for Sam and me, and of the many testimonials we read regarding 3cm+ tumors removed at House, the good recoveries eased my mind.  Though no surgery is guaranteed, I want to go where my chances are the best.  I will loose the hearing completely in my right ear, but chances are good I will keep my facial nerves.

My suggestion is to send a CD of your MRI to House, talk to the doctors there and explore the option using HEC for your son’s AN removal.  Though I don’t have a post-op story for you and I’m newly diagnosed, I urge you to explore another option.


Adrian

[robynabc]

Eric had his surgery about a month ago.  He is doing absolutey phenomenal  except for one problem.  He has a parylized vocal cord.  He does not have much of a voice and eating takes him some time.  His facial nerve was completely saved and he has had no weakness hardly at all and no paralysis at all.   And they saved it and  got all of the tumor. This is practically a miracle.  The vocal cord will hopefully come back. He may have to have another surgery for that if it doesn't.  His balance is better than it was before the surgery. Before the surgery he was tripping all over the place.  He was walking pretty good when he got home ( he would just have to gently touch us and at times we just had to stand next to him in case) and in about 2 weeks he was better than before the surgery.   Same with his facial numbness.   This is still hard for me to talk about so I will keep it short.     I know we picked the best doctor especially his ENT Surgeon.  Everyone told us he was amazing.  He was. So was his Neurosurgeon.   His doctors are both heads of the Deptments at University of Colorado.  They were excellent.  And yes we talked to house and decided on University of Colorado.  I will explain our decision in another post. 

Eric was home in 5 days.  He recovered from the surgery really fast.  I am sure that is because of his age.   When I able to talk about more I will let you guys that need help with picking doctors know how we did it.  We also had many prayers  ( I contacted everyone I know that goes to church and asked them to pray for him and asked them to ask their church to pray too.)  and did alot of Reiki before the surgery. We also did our best to stay as positive as possible before the surgery.   I believe this all had something to do with how well it went.   Here is the kicker,  the day after he went to the doctor for his followup we asked if he could walk they said 'walk as much as you want'.  So, next day he went to a movie at the theater.  This was 11 days after the surgery. He wanted to go 2 days earlier but I insisted that he wait til he talked to the Doctor.   Amazing.    Thanks again.

[robynabc]

Oh and I forgot to say thanks so much for all your information.  It was invaluable to us. 

[hendi51]

I'm glad your son is doing so good Robyn. May he continue to do so.

[Obita]

robynabc:

Your son sounds like an amazing young man.  Please keep us updated on his progress. 

Best of luck to him and you.  Kathy

[Laurie]

So sorry to hear about your son.  My sister in law and I both within six months had the same tumor, but on different sides.  We live on the east coast, but both went to The House Ear Clinic in LA.  We both had no facial problems and recovered relatively quickly.
She did have spinal fluid problems, but I did not and mine tumor was larger than hers.  I feel my doctors and the hospital given  to us was just "outstanding care" and was so glad I had it done there and no where else.  The important thing is to do your homework about any dr. or place you choose for your son.  WE all want the BEST we can get for our health.  Keep us updated on your son.

[robynabc]

Robynabc,  I'm the one who had Dr. Hegarty in the Springs. I had a 4cm tumor that was pushing on my brainstem.  Did your son have surgery yet?  I am 2 1/2 years out from surgery and I am doing wonderful. I can not say enough good about Dr. Hegarty.  He was very involved after surgery and all my after care has been excellent.  I still see him because he debulked my tumor so there is a slim chance it could reoccur.  He does not let any part of your recover go with out attention.  I had balance therapy for four months and a gold weight in my eyelid for a year.  He referred me to a wonderful plastic surgeon for that.  I always say I got the best treatment possible.  Hope you and your son are doing well. If he has had surgery, the best I can tell you is take one day at a time and he WILL get to the point that life is good!!! Blessings, Cath

I think Dr Hagerty is a very kind person.  When I saw your post here about him.  I called him in the Springs.  He called me at 10:00PM that night from his home.  He told me he didn't feel qualified for Eric's because he is young and how large it is but said he would have sent us to the Doctors at Colorado University that we were already seeing. He spent 20 minutes talking to me about the two places we had in mind and he was so helpful with information.  I really thought he was great.  I am so glad you had him for your surgery. 

[robynabc]

So sorry to hear about your son.  My sister in law and I both within six months had the same tumor, but on different sides.  We live on the east coast, but both went to The House Ear Clinic in LA.  We both had no facial problems and recovered relatively quickly.
She did have spinal fluid problems, but I did not and mine tumor was larger than hers.  I feel my doctors and the hospital given  to us was just "outstanding care" and was so glad I had it done there and no where else.  The important thing is to do your homework about any dr. or place you choose for your son.  WE all want the BEST we can get for our health.  Keep us updated on your son.

So glad to know you are doing well also.   Thanks so much.

[Jim Scott]

Hi, Robyn:

I just want to add my congratulations to you and Eric on his successful surgery and rapid recovery.  Prayers were definitely answered. 

I admire your determination to do the best thing for your boy in a situation that you went into knowing little but diligently learning all you could - here and elsewhere - and seeking out the very best surgeon to perform the operation on Eric.  It paid off handsomely.  I pray that Eric's vocal paralysis will resolve in time and he'll be back to his 'old' self.  I know you'll still be with him every step of the way.  Give Eric my best wishes and hope for a bright future, which I know he'll have.   

Jim