14 y/o Daughter w/Facial Neuroma

[GingerAg]

Hi Everyone,
I am glad to have found this forum, even though it’s not the best of circumstances.  I know this forum is really for acoustical neuromas, but I think my daughter is experiencing some symptoms of that with her FN. I did read some of the posts here for FN.  We found out in early April that my 14 y/o dd has a facial neuroma, diagnosed through a contrasting MRI and other testing.  It’s measuring about 1.8 cm.  She is the youngest person they have seen with this type of tumor.  We were able to secure the two best doctors in this area for the surgery, but because of their busy schedules it’s not until the end of May.  The surgeon graded her severity at 1.6 out of 5 for facial paralysis.  She can’t produce tears anymore, her smile is lopsided and her eyebrow doesn’t go up all the way. We also think her eye might not be closing all the way sometimes, since the eye dr found dry spots on her cornea a couple of months ago.  We have been putting gel in her eye at night. They can’t tell 100% the location of the tumor until they get in there, and there is a possibility of a nerve graft.  I just hope that being young is on her side and her nerves bounce back if they are able to salvage them.

She is doing OK with the diagnosis, but waiting for surgery is really hard.   She has some symptoms that keep getting worse, especially in the past week.  I was hoping some of you might be able to help.  The surgeon’s PA is good with prescribing meds but not necessarily helping us troubleshoot. 
 
We are just trying to keep things as normal as possible until after the surgery, but she’s feeling so sick she can’t go to school. We think the tumor is pressing on the acoustical nerve next to the tumor, causing dizziness and nausea (she had a hearing test and there is no hearing loss).  It comes and goes at least 12X a day, if not more.  Children’s Dramamine helps for a very short time, but we’re trying to find something longer lasting.  The adult Dramamine is not helping much either.  She tried ginger pills and they made her feel more sick. The dr prescribed a nausea patch and that made her so dizzy she could barely walk.  We are now trying Phernergan and hopefully that will help.

Any suggestions from tried and true experiences? Will the dizziness and nausea go away after surgery? 

If anyone else has had issues with their eyes...is eye gel/ointment at night enough or should she also put something in her eye during the day, even if it feels OK? I plan to make an appointment with a children's eye specialist to ask more eye questions, but thought I'd also ask here for others with the same experiences.

Thank you for any insights you can share!

[caryawilson]

First. Eye problems are by far the worst part of my facial paralysis. It took a few months but my cornea is now in great shape, but I'm meticulous about caring for my eye. This was absolutely required for me:

1. Plug the tear ducts. Simple process. The eye doctor plugs the tear ducts preventing loss of any artificial tears. Absolutely essential when you don't produce tears. Takes 30 seconds in the doctor office.

2. Prescription for Restasis. Helps your boby naturally produce tears. I take 1-2 times daily.

3. Artificial tears. Without preservatives. I use Systane Ultra Vials. Get the small daily vials NOT the bottles. When you are using long term you want to avoid the preservatives in the bottles. I use this up to 3-4 times an hour. Basically I use it all the time. If I need to skip an hour or 2 I don't worry about it, but I try to use all the time. Tears not only lubricate the eye buy also remove bacteria, dirt, etc.

4. Ointment at night.

5. If the eye does not close all the way, she will need to have plastic surgery. Not a big deal. She may need a small gold weight to help it close (easy but strange 20 minute procedure) or a more complicated lower eye lid tightening.

Basically get a cornea specialist and eye plastic surgeon.  When the eye hurts, it's completely debilitating. Keep them on the team before and after the surgery. The brain surgeons and nurses don't pay as much attention to the eye.

If the eye doesn't improve, people rave about sclera contact lenses.

My next advice may sound harsh. Some of us have had luck getting rid of dizziness by training the brain. The idea is that if it makes you sick, keep doing it until it stops.  Definitely not easy and much harder for a young girl. As you've seen medicines also have their side effects. There are numerous Internet references on this as well as physical therapists that specialize in vertigo.

Tinnitus... For me it's constant. It's another one of things I've learned to ignore. It may go away for her or it may get worse. For many of us, we have been able to ignore it, but I know many people have NOT been as successful.

[researcher]

Excellent advice, Cary!!!!

I think the balance issues may be better after the surgery. The tumor is causing the current symptoms. With acoustic neuroma surgery the doctor cuts the balance nerve. It is so damaged that it's better to just let the other side's nerve take over. Not sure if this happens with your daughter's surgery. 

Your daughter's young age should be a plus in her recovery. That's my opinion. You and your daughter will get through this! Hang in there!

[caryawilson]

The MOST important decision is the treatment (surgery or radiation) and the doctor / facility.   Facial neuroma is a little unique so I can't offer guidance, but I'll give the "standard" acoustic neuroma information.  House Clinic in Los Angeles is one of the premier locations for AN and will provide you a remote consult.  It may be a good idea to get their opinion.    Also, a few top radiation facilities include:
CyberKnife radiosurgery - Stanford Medical Center in Palo Alto, California. They do more CK than any facility worldwide.
GammaKnife - University of Pittsburgh Medical Center in Pennsylvania

Keep in mind, radiation specialists don't normally recommend surgery and surgeons don't normally recommend radiation.  It's a little tough to pick the treatment that's right for you.

House Clinic provides free consultation over the phone for acoustic neuroma.  you can send your MRIs and have the consultation over the phone.  I would think they would do a free consultation for facial nueroma, but you need to ask.
https://www.houseclinic.com/consultation/acousticneuroma


I went to John Hopkins for my surgery and I was amazed at the experience.

I hope this help and I wish you and your daughter the best.

[Cheryl R]

A facial neuroma is just like an acoustic neuroma except on the facial nerve.    Make sure to ask her drs how ANs they do so they are very experienced with those and also how many facial neuromas have done as they are more rare.    Hope fully hers is such that a sliver can be left on the nerve and may not grow or even die from lack of blood supply.     Being so young she may be a possible NF2 with future tumors.     Closer observation maybe needed for her as time goes on.  I do have NF2 and did have a facial neuroma.       My nerve was severed and at then the same time a piece of nerve from by the ear was grafted in.     it takes several months to even see the start of facial movement  returning and there probably will not be complete movement return.  Movement around the eye is last if even does return.  So no eyebrow movement.     My eye does close but not completely at night so do use the gel at night.       These gels are all OTC so yes she can use night gel and have some lighter weight always around for day use.     I use Refresh Liquigel in the  day occ.   I did not have a gold weight put in but that is an option if the eye does not close post surgery.        The liguigel has preservatives in them which bother some people but hasn't for me.        You do not need to wait and ask a dr. Just get some and see if makes her eye feel better.    Sometimes people have to experiment which brand works better for them.
     Her  symptoms should improve post op.    I never had them. Just some mouth dropping starting.    I would say she needs to have surgery soon with such symptoms.                 There are other types of surgery to help the facial issues also but are not done at the same time if the nerve is severed.                   I am sorry to hear this is happening to your daughter and hope all does go well for her.                 Cheryl R

[GingerAg]

Thank you so much for all the info! I really appreciate all of you taking the time to write your experiences and information. You have given me info that I never even thought I should ask the doctors.  I am putting several things mentioned on a list to discuss with her doctors when we see them.

We are in Raleigh and have been referred to Duke.  I have a family member that was on the medical board here and he has talked to dozens of doctors, and they all have recommended Dr. Fukushima.  Fukushima travels all over the world to do these types of surgeries, and the other is a younger doctor that he has been mentoring for years.  Fukushima has done thousands of skull based surgeries, which include  both AN and FN.  I do feel we are in really good hands with these two surgeons and am thankful we are so close to both of them. All the doctors we have seen said radiation is not an option because of her age, and I agree after everything was explained to us. 

She has been on the Phernergan since Monday and it is helping the most out of anything she has tried so far.  On a 1-10 scale (10 being the highest), her dizziness and nausea is down to about 3-4 with Phernergan.  Without it it's about 7-8.  She's able to sleep through the night again, so it's definitely an improvement over everything else.  I told her this might be as good as it gets until the surgery.   

[GingerAg]

Wanted to update everyone after surgery.  We are now a little over a week post-surgery (they had to move the surgery date).  My daughter has done so well the doctors are amazed. She was discharged from the hospital 2 days after surgery.  Her pre-surgery dizziness and nausea are gone (YEAH!).  Her eye seems to close better at night and we have not had to put drops in. She says it still feels a little swollen in her head at times, which I guess is understandable.  She does have problems when she's on the computer.  It makes her a little nauseous to stay on too long.  I guess that should improve with time.  Today is the last day for steroids.  She is only taking Advil for very minor headache pain that comes and goes. She has 35 staples they will remove next week. 

As for the tumor, they left a little of it in there because it's attached to her facial nerve.  Because she is so young, they were hesitant to do a nerve transplant that may or may not take.  Hopefully the tumor with stay put and not grow (or if we're lucky just disappear).  If it does grow back, hopefully it will be very slow growing and take years. 

Overall she is doing great and we are so relieved!

[Blw]

Great news that they didn't cut the facial nerve, which then requires a nerve graft and lots of recovery time. I would presume thay will monitor closely, sometimes residual tumor will die on its own. If not, radiation would probably be the next option as the facial nerve can take th ehit and not be damaged permanently. Mine was thought to be on the facial nerve, and no one recommended surgery. A nerve graft is a long road to travel, so I was delighted to be a good candidate for gamma knife.