Hi--Our 14 year old daughter has been diagnosed with a schwannoma tumor

[lovingchild]

Hi, I am just joining this forum.  Our 14 year old daughter has recently been diagnosed with a 2 cm tumor.  We have made the decision to go ahead with the removal of the tumor because it has caused paralysis on the right side of her face, and fear, that if left, the paralysis will only get worse with time.  Although the surgeon has told us, that after the surgery she will go from a 2 1/2 to at the least a 4 (scale being 1-6, 6 being the worst in facial paralysis).  We are actually having the surgery done in the middle of June at MUSC in Charleston, SC.  If anyone has had a surgery of this nature at MUSC, I would love to hear about the Surgeons that were involved.  We have never had to deal with anything like this before, and still have many questions and concerns.  I thought that this could be an out for us, by hearing about situations and recoveries from people that are going through this or have gone through this.
Best Wishes to everone out here and God Bless anyone who is going through this. 

[rebecca]

Hi,

Gosh, I can only imagine what you must be going through.  Have you thought of contacting the surgeons at House clinic in Los Angeles.  I know they are highly recommended and can sometimes get you around the insurance issues.  The success rate is very good, I've heard in terms of facial paralysis.

I actually had my surgery through wonderful Kaiser doctors in San Diego, who were also specialists and confer regularly with the doctors at the House clinic.  I know I've seen some posts on this site regarding House.  Can anyone get our mom and dad in touch with them?

I only say that because just dealing with the facial paralysis that I've had post-surgery--that it has been difficult-- and for a 14 year old, it may be more so.  If there is hope to avoid that, I think it would be worth looking into.

Best wishes to you and your wonderful child!

[tumor mom]

Oh my gosh, I know what you are going through.  My 19 year old was diagnosed with a 4.5 cm tumor back in February of this year.  We were devastated and so worried about the facial paralysis.  We were set to have surgery the middle of March at the Texas Medical Center in Houston - but I decided after reading about the House Clinic on this site to send her MRI out to L.A.  They call you back within 24 hours of receiving the films and consulted with us for over an hour on the phone.  We decided to go out there because the surgeons work on these tumors a couple of times a week and here in Houston we were quoted maybe twice a month.   They have seen every problem that arises with these type of tumors.  The hospital staff, is also wonderful and they devote one side of the 6th floor to this type of surgery.  Everyone on the floor is basically going through what you are going through so you can look out your door and see how well you will be tomorrow by a patient that had the surgery the day before you did.

I cannot say enough about the doctors that operated on my daughter.  We used Dr. Friedman and Dr. Schwartz.  They did the translab approach and although the surgery went longer than expected her facial nerve was saved.  They spent the last three hours of surgery on the last 5% of the tumor to save the facial nerve.  Today she is 6 weeks post op and although she had a little facial weakness two weeks after surgery due to the swelling - I would say her smile is almost 90% back to normal and each week we've seen an improvement.

If you need any other information please feel free to contact me my email address is dlsdms@earthlink.net.   That is how we ended up at House, I contacted people on this board who helped me out.   Originally my daughter was going to have the retrosigmoid approach and we were quoted 15 hours of surgery - we couldn't believe it.  We had met with three different teams of surgeons here in Houston, one doctor wanted to do it by himself and if he wasn't done by 6 o'clock he was going to close her up and go back in a few weeks later.  Forget that. 

Whatever you do research all your options.  We're all praying for your daughter and for you.  Good luck

Donna

[GM]

I am truely sorry and as a father I understand your worry.  There is a site in the Yahoo groups for teens with AN's...it's not very big (5 members) and I'm not sure how active it is...but maybe she can chat with other teens...or at least IM them.  http://health.groups.yahoo.com/group/ANteenandkid/     
Hope this helps you rdaughter to not feel so alone and scared.

Gary

[Russ]

Hi
  Maybe email Jessica at grubefam6@aol.com. She had a large AN removed at a young age. I have cleared correspondence with pts. with Jessica's Mother, Debbie. Jess may also be on the small group for kids. I'm not sure.
  Is MUSC a well experienced facility? Seems House Ear Institute in LA is your daughters best bet. This may seem like quite a trip, but the situation is potentially life altering for her.
  If you have the MRI sent to HEI, they will telephone you free with an opinion.
  May God guide, direct, and bless her outcome!!
  Russ

Hi, I am just joining this forum.  Our 14 year old daughter has recently been diagnosed with a 2 cm tumor.  We have made the decision to go ahead with the removal of the tumor because it has caused paralysis on the right side of her face, and fear, that if left, the paralysis will only get worse with time.  Although the surgeon has told us, that after the surgery she will go from a 2 1/2 to at the least a 4 (scale being 1-6, 6 being the worst in facial paralysis).  We are actually having the surgery done in the middle of June at MUSC in Charleston, SC.  If anyone has had a surgery of this nature at MUSC, I would love to hear about the Surgeons that were involved.  We have never had to deal with anything like this before, and still have many questions and concerns.  I thought that this could be an out for us, by hearing about situations and recoveries from people that are going through this or have gone through this.
Best Wishes to everone out here and God Bless anyone who is going through this. 

[mom of AN pt.]

Hi,

Gosh, I can only imagine what you must be going through.  Have you thought of contacting the surgeons at House clinic in Los Angeles.  I know they are highly recommended and can sometimes get you around the insurance issues.  The success rate is very good, I've heard in terms of facial paralysis.

I actually had my surgery through wonderful Kaiser doctors in San Diego, who were also specialists and confer regularly with the doctors at the House clinic.  I know I've seen some posts on this site regarding House.  Can anyone get our mom and dad in touch with them?

I only say that because just dealing with the facial paralysis that I've had post-surgery--that it has been difficult-- and for a 14 year old, it may be more so.  If there is hope to avoid that, I think it would be worth looking into.

Best wishes to you and your wonderful child!

[mom of AN pt.]

My daughter is 16, sophmore in highschool and just had her 4.5 cm AN removed in April 2005 at the University of WA Medical Center here in Seattle.  She said she would email your daughter. 

She had to have two surgeries within weeks of each other!  33 hours under anesthesia between the two...but with brain surgery, sometimes slow is good.

It is an awful trama for a teen (and parent) to have to go thru. Post op problems are frightening when you don't know what to expect... but my daughter is seven weeks post op and each week something is better. She had facial problems after surgery and was scared to death...but they are going away week by week by week...Loss of hearing is hard but she is coping.  

Stay positive because hope really heals...especially at their age.

[russ]

Hi
  I do hope that MUSC in Charleston, SC is well experienced in dealing with neurofibromatosis -2.
The possibility of having that is greatly increased when a child that young presents with an acoustic neuroma.
  Seems your family would want genetics counseling and I hope MUSC offers that.
  Russ