new member trying to find treatment options

[holly-bear]

Hi everyone.  My name is Holly.  I am 20 years old and I was diagnosed with NF2 when I was 13.  I was losing my balance and seeing floaters so went to several doctors and finally decided to go to the emergency room at Children's to find out what the heck was wrong with me.  They did a CT scann and found a massive brain tumor and did emergency surgery.  I woke up from surgery unable to see.  The doctor isn't sure what happened.  A later MRI showed a tumor on my optic nerve and he removed that one hoping I would get my sight back.  It didn't work.  The tumor had been there so long that he had to chop up my nerve to get the tumor off.  A few months after that I had 5 tumors removed from my upper spine.  I have bilateral ans too.  He told me they were so small they didn't need to be worried about.  I get an MRI every year to check on them.  Well that neurosurgeon up and left.  I went for my anual check up and there was a new guy there.  I was werry of him, didn't want a new doctor.  But the next year I went back and he was gone too.  I currently have the neurosurgeon that followed him and I dont' quite like him.  He doesn't inform me of anythingg.  Last April I went and he jsut looked at the scan and said he wanted to see me back in six months and he would have the nurse to set up the appointment and call me back.  She never did.  I tried calling them and just got the run around.  I got pregnant in December and lost my sense of smell completely for 3 months.  I kept trying to call my doctor's office and see if a tumor could cause that.  They finally got back with me and told me that no there was no tumor there and that the doctor would see me after I have the baby and to call after that and make an appointment.  Well it takes like forever to get an appointment down there so I didn't understand why I couldn't just make an appointment then for after the baby's due date.  Anyway in June or July my hearing was driving me crazy.  Felt like I needed to get it cleaned out so i went to the doctor to get it cleaned and there was nothing there.  So I started calling my neurosurgeon again and driving them crazy until they made me an appointment.  I had the baby on August 19th and had my MRI and saw the doctor on September 5th.  Also, I am totally deaf in the right ear, have been for about 6 or 7 years.  I don't get it because the tumor on that side is smaller than the one on the left.  My hearing on the left has always been perfect though, and it just hasn't been as good.  Almost like my eustation tube is messed up.  Well the neurosurgeon comes in mumblind and I tell him that I need him to speak up because I can't hear that well right now.  He said the tumor on the left looks like it has grown but he wasnt' sure because he didn't have a previous MRI and wanted me to tell him when my last MRI was.  Well he's the one that ordered it, why don't he go look?  Anyway I told him and he went out to find it and came back later and said that the one on the left has grown quite a bit and now is starting to push on the brainstem.  I froze.  I hear brainstem and I think I'm going to die.  He tells me I need surgery.  I told him that I really didn't want to do that because I can't lose my hearing.  I don't want to be totally blind and totally deaf too.  He tells me I have no option.  So then he turns around and tells me that I need to see the ear doctor and make an appointment with him, and after I see the ear doctor to come back and see him, the neurosurgeon.  Well obviously he doesn't know how long it takes to get in down there.  So I told him to make me an appointment with the ear doctor.  He said he'd work on it and call me with an appointment, I still haven't heard anything.  He tells me it's not urgent, but to me...this is urgent.  I dont' want to be deaf but I dont' want to die either.  I just had my son and I just have too much to live for.  I did ask him about gamma knife after he told me I had no choice, and he said gamma knife wouldn't be a good option because the tumor is near the brain stem.  So I don't know what to do.  I'm trying to call Dr. Friedman at house, but he isn't calling me back.  I don't know if I want to go through with surgery because that is almost a definate hearing loss or if I want this radiation stuff I've been reading about.  The only drawback to that I see is that if you do end up losing your hearing with FSR or whatever you can't get an auditory brainstem implant.  I really don't know what to do.  Does anyone have any advice for me?  The dumb doctor didn't even tell me how big this thing is and dumby me forgot to ask because I was so upset.  I did call the hospital the next day and had a copy of my MRI sent to me.  So now I just have to find a doctor to send it to and see if they can tell me what they think they can do for me.  Sorry for this long post and I hope I didn't leave anything out.  If you have read this far, thank you. 

[Larry]

Holly,

Welcome to our humble forum. Your plight is shocking and more so, the medical advice / lack of it, is probably worse. My situation is nowhere near as severe as yours but there are posters here who will be able to offer advice based on their situation. You may want to check out the threads on Baha and Transear. There is a transear rep who posts on this site and you may want to explore those hearing deices in more detail. There are also gammaknife and FSR treated posters who should be able to help a little.

Laz

[Obita]

Hi Holly - welcome and congrats on the birth of your son!

I am so sorry to hear about all that has happened to you.  Come on here to vent anytime you feel the need.

Where to you live?   

There are many people on this forum that know everything about NF2.  I am sure they will be along to answer your questions within a day or two and hopefully, someone will be able to recommend a doctor in your area.  You need one you can trust.

Hang in there Holly, Kathy

[Dealy]

Holly-Bear. I am an NF2 here-but I am 58 years old. My story in brief. Had a 1.5CM when I was 38 years old on the left ear. Told this was isolated and had it surgically removed-no complications but left me deaf in the left ear. Since I was told this was an isolated case I never had a MRI to check on the status of the removed tumor. This all happened in 1988. So I figured I am done with these things and throw my first MRI away. Fast forward 18 years too 2005. My face goes numb at work. MRI confirms I have a 2.5CM on the right ear. That now makes me an NF2. Doctor in kansas City Missouri (in the States) wants too remove it and install an ABI Brainstem-I tell him no way. So I checked out the Internet  for 3 months. I found an NF2-older lady from Texas who had FSR at Johns Hopkins and maintained hearing on one ear-the other went dead on it's own. Five years later after FSR she still has some hearing in that one ear but is gradually losing that so she opted for a Cochlear Implant in her dead ear. Mind you both ears (AN's) were radiated and are dying-so she still has a hearing nerve-a pre-requisite of course for a Cochlear Implant. So I opted for FSR last summer at Johns Hopkins in Baltimore, Maryland. I still have hearing in my only hearing ear but it is crashing fast. Some on this sight have indicated that the female hormones from childbirth can cause growth. I take it from your post-you do not live in the States-if you do-then I would find another doctor-if you have the option. You need too find out the size of the tumor in question. That is the first priority. At this point-deafness will most likely occur sometime down the road but if they remove your hearing nerve-the option of a Cochlear Implant is voided. I waited a year and a half before choosing FSR. If I ever have too have surgery-well it could be more difficult to remove. Take your time and choose your options carefully. There are other NF2's on this sight that will also probably post and give you their input. Keep watching this forum and I am sure you will be able to make an informed decision. Thanks_Ron

[holly-bear]

Hi thanks for the replies.  I live in Arkansas.  The doctor I go to is down in Little Rock.  There are two main hospitals in the state.  That is Arkansas Children's, and University of Arkansas Medical Sciences(UAMS).  I've always gone to childrens but now my doctor decided that since I had a baby I would have to go over to the UAMS but he would still work with me.  No biggy except I hate trying to navigate that hospital because there is no help and I just don't know what I'm doing.  Anyways, I do live here in teh states I just am unsure what to do.  I dind't know a CI would work, spelling? coclier or whatever.  I've been seeing an ear doctor at Childrens, now having to see him at UAMS, since I was diagnosed.  I've asked him about a CI when I first saw him because of the deafness on the right side.  I can't remember what he said exactly but it seems like that wouldnt' work for me since my nerve is destroyed or something?  I dont' know if the nerve is really destroyed or if these people don't know what they are talking about.  So he told me I could get a baha on the right and left ear would pick it up.  I thought about that but never got around to getting the surgery.  So if I have FSR and I do end up losing my hearing down the road anyway, even if I couldn't get an ABI I could still get a CI?  Forgive me if these questions are stupid, I jsut don't know.  lol.  Thanks everyone!  Also, I asked the neurosurgeon before I got pregnant if pregnancy would cause the tumors to grow or anything and he told me no...now I'm wondering.  My husband and I wanted a baby, but may have gone with adoption if we knew that the tumors would get out of hand.  But, I love my son to death and wouldn't give him up for the world.

[Dealy]

Holly- Sorry-I thought maybe you were from Down Under. Well I live In Kansas-so I am right next door. The thing with female Estrogen causing growth was what I gathered from some postings on this forum. That does not matter anyway now-you have your precious baby. I might clarify that radiation has a size limit pf usually 3CM and any tumor touching Brain Stem is out, Their is one doctor in New York City that will radiate above 3CM but personally I would not risk such an adventure. I chose radiation because I did  not want another surgery and I was trying to save my hearing. Last MRI-3 months ago showed tumor had swoll and is shrinking in sise and shows signs of dying in the middle. The journey is far from done though. I still have a long road to go. I chose FSR because literature said it was less intrusive and damaging on Hearing Nerve than other forms of Radiation-but alot of that depends on what literature you read. Take Care_Ron

[Sue]

Hello Holly and welcome to the forum.  I,too, am saddened by your plight and I do hope you can find some competent medical care as soon as possible.  There is a very fine AN specialist in Tampa Florida that has gotten some recent attention here on the forum, and also there are some highly regarded specialists in Texas.  I don't know if there is anything closer to you, but there might be.  If it is possible for you to send your MRI's to these doctors then that might be in your best interest.  There is a wonderful hospital in LA that has a world class reputation and many people have traveled from around the country to get treated at House Ear Institute.  (http://www.hei.org/)    They do phone consultations. 

Congratulations on the birth of your baby boy. (be sure to get him tested when he is older!)

Sue in Vancouver USA

[Windsong]

Hi Holly,

Welcome to the forum too. And congratulations also on your new baby boy.

Hopefully you will get some good advice from HEI or another An specialist, (one with nf2 experience too). You sound  like you have a good head on your shoulders and it's good to see you taking charge and getting all the info you can. Ron here has some good advice. The one thing I wanted to say, however, is that even though the An is touching the brainstem, you might still be able to have radiation treatment. Mine was touching the brainstem (impinging on it a little bit) and I had fsr (5 weeks of treatment). That was two years ago almost. I believe the ANAC board up in Canada has at least one case of a mom with two Ans. There may be more. You might want to check out their message board:

http://www.anac.ca/en/

Also you might try the good doctors on the ck board. They are very good about answering questions. I don't know if Dr. Medbery has had an nf2er. But you can ask.

http://www.cyberknifesupport.org/

Wishing you the very best in this journey you are on!

Came back to add a PS: there's a site called ctf.org that talks about nf, also.
windsong

[tony]

Hello Holly Bear I posted this for John a week back - I would suggest
some applies for you as well

"Yes - a very dark place for sure - I am there already (NF2 is never easy)
so I know what you must be thinking
Can I offer a few basic practical suggestions.
Firstly - lipreading - a basic understanding will help you immensely
both now and if, or when things get more serious
Generally it is said you learn quicker and better while you still have some hearing
You can practice at home with the TV on low vol - watch what they say etc
Best to get proper lessons as well - meantime an amplified phone will help
Second you will need some kind of follow up care
a kind of annual check-up for some while now.
Its probably best to deal with folk that have experiance of the issues
at one in 40,000 its a rare condition - so not many clinics are qualified
(I would go with the HEI suggestion on the earlier posts)
The same is true re any genetic checks or issues
Its just possible you are someones first NF2 patient - look for experiance
Third - Mental state - the issues are real enough - some 50% of NF2s
suffer from deppression - be aware of this and search out the support services
Fourth - some of the gamma knife/FSR options seem to offer the chance
of retaining some hearing for 10 yrs or so
Again deal with the experianced
- depending on size/location/existing situation etc - not a bad compromise
Finally I have some stateside contacts who are with the NF2 CREW
I could pass them over on a private note if you wish
Sorry, I guess your head must be spinning at the moment
I hope this helps you"
Best Regards
Tony

 

[Raven]

Holly,

I can't offer you anything more then what has already been said. I'm new to the NF2 arena. I will say this, listen to what Tony, Cheryl, NF2er, Mark, Jeff, and Dealy (forgive me if I left anybody out) has to say. they have experienced it, I've "only" lost most of my hearing at this point, heck I haven't even had surgery yet on one of mine. I do know that being bilateral puts a different spin on things. I woke up on July 10th (a date I will never forget) and couldn't hear out of my left ear, fast forward two months later and now my right side (good side.......LOL) is not much better. At first I was thinking being deaf on one side would not be that bad and I was starting to get used to it, but now I'm looking straight down the barrel of being totally deaf, in just two months!!!! Having one AN is not an easy walk in the park, having two makes that walk much harder. A friend of mine who had his left leg amputated in the spring told me........."there are things that are worse, me and you however will survive". Hang in there, all of us are.

John

[holly-bear]

Thanks everyone.  I have sent my MRI to Dr. Friedman at House.  I hope he gets back with me soon and tells me what he thinks can be done or needs to be done.  Also, who are the specialists in Texas?  I might give them a try and get their opinions as well.  Florida, sure why not, who is that person too.  This is something that I can't afford to mess around with.  I have to get all the opinions I can and see what the best thing would be.