Diagnosed this week - Acoustic Neuroma and Arachnoid Cyst impacting Brain Stem

[kippy6]

I'm a 40 year old mother with 4 children ages 2-13. I live in the Atlanta metropolitan area. My ENT ordered an MRI of my brain. I had my MRI this week, and I found out I have (The MRI imaging report is in quotations below):

 
1. Acoustic Neuroma benign tumor in the "posterior fossa" part of the brain, at approx 3 cm. "Approx 28X27X24 MM homogeneously enhancing extraaxial mass within the right cerebellopontine angle. The mass appears to extend into the right porus acusticus, which would favor the diagnosis of Acoustic Neuroma over Meningioma."

2. Arachnoid Cyst which impacts the brain stem. "Mass effect upon the right cerebellopontine angle with leftward deviation of the fourth ventricle but no hydrocephalus. There is trapping of CSF within the right cerebellopontine angle cistern."

 
Yesterday I saw 2 neurosurgeons in Atlanta. Dr. Murphy told me about the surgery aspects of AN. However, he said it really looked like a Menigioma to him. He said that we wouldn't really know until after surgery. He told me to see Andrew Reisner for the Gamma Knife perspective. Andrew Reisner is a pediatric neurosurgeon, who also see adults. So yesterday, I obtained as much info as a person can in one day from these 2 polite doctors.

However, I have a few questions.

1. Does having an Arachnoid Cyst complicate my AN situation? If I choose Gamma Knife for my AN, how will this affect my AC (Arachnoid Cyst)?

2. Sometimes you just want to find the best doctor, and let your faith lead you. Especially when you feel a little light headed already...doing extra research is kind of hard. So I have been told I need to see a Skull-based doctor for my AC, and a neurosurgeon for my AN. This is too hard for me. It's hard enough finding one doctor, much less two. Can't I find one doctor who is an expert in both of these things? 

3. I have lost a little of my hearing in my right ear...high frequencies only. I have ringing in my right ear, which started about 2 months ago. Starting last week, I am experiencing pressure in my right ear. Starting today, my right eye feels like it has Novacaine in it, and I have strange sensations like a feather is tickling my eye lid when I blink. I've been told that I need treatment within 30-60 days. However, it seems that I'm developing new symptoms frequently now...shouldn't I find a doctor soon in case I wake up one mornining, and I have lost the ability to blink, or something gets worse?

4. Which is best for me Gamma Knife or surgery? If I do surgery, I'd like to do something minimumly invasive. Any suggestions on the best options for me?

5. Each surgeon has their preferred method of treatment. How do I find the best treatments and the best doctors?

6. A friend of mine lost her ability to blink her left eye (before AN surgery). Her AN surgery did not correct this. If you lose function in a facial muscle, or lose hearing due to AN symptoms, is it possible to regain these abilities after surgery, or are they lost forever? This is why I don't want to wait until I lose function of a facial muscle before I get treated. It seems more immediate than 30-60 days to me. Please advise.

 

 ****If you know of an expert who could handle both of these (AN and AC), I would be so appreciative. I sure would like to preserve my hearing and facial muscle function if at all possible. Is there anyone in the country who has experience with saving the hearing and facial muscles, or even repairing these if function has been lost?

 

Thanks so much.

[wife4life]

hi,
just wanted to add my 2 cents...i also have a 3cm an pressing on my brainstem...i am having surgery on june 29th...i know it must come out due to the location of the tumor...i wasn't given an option for surgery vs. anything else...so its got to go...i can tell you from what i have read and know that just one doctor is probably not the way to go...i have read that a team effort is the best option...
i know that i had only had hearing loss ( 100%) as my only symptom but when found out what i had.i started getting "classic symptoms" i.e. headaches, numbness, pain in my ear...but once i finally calmed down and thought about it...the symptoms when away...i am not saying that you aren't having these symptoms..i just know that i didn't have any and then all of a sudden when i found out ...i had every symptom possible ... now that i am closer to surgery i realize i still only have the hearing loss...
i am sorry that you are having to go through this...but there are so many on this site that can chime in and give you a helping hand...trust me i know
they have " been there done that"...i just know my situation
as far as regaining your facial muscle...i have been told yes...you can regain control...i am not sure about the hearing...but if you hang around here long enough...someone will come by to give their input i am sure 
good luck to you in what ever decision you make...but as i have been told...trust in your decision...you don't to second guess yourself later
good luck
Kim

[tumor mom]

Before you make any quick decisions, interview a couple of neuro teams, this will help ease your nerves and help make the right decision.  I would suggest you send your MRI out to the House Ear Clinic out in LA.  They will call you within 24 hours and give you a free phone consultation.  My daughter had an almost 5cm AN with a cyst removed by Dr Friedman and Dr Schwartz 15months ago.  We are very happy with our decision - and the operation was a huge success.   At first we were worried about travelling and leaving the rest of the family home in Houston for two weeks but it was well worth it.   If you need to talk to her or to me just email me and I'll send you our phone number.  Good luck with your decision but be careful not to rush into anything if you don't have to.

Donna

[Battyp]

Hi Kippy,
  First take a deep breath..in through the nose out through the mouth.  I feel your stress.  I'm not saying you don't deserve to be stressed because lord knows I was when I got my diagnosis and was given 6 weeks to find a doctor and get on a table and they didn't think I'd make it.  So please realize you're not alone you've found a place that understands and everyone here will try to help.

I have no idea about the cyst situation so I'm not going to pretend I do.  I have one now but I'm post op.  I was told this is a normal post op thing so maybe it's not an unusual occurrence pre treatment.

Get a copy of your MRI and your MRI Report.

Send them to the House in LA for a free consult.  There are other places that will give you their medical opinion including gamma facilities.  I know I've emailed one post op for an opinion and they told me to send them my mri and dr notes for a free evaluation.  It does not commit you to treatment at their place it's just giving you more info and an option.  I'm sure Phyllis will be along shortly who knows the atlanta area pretty well and has a better understanding of gamma/cyber than I do.

It is my understanding that once you lose your hearing before treatment you will not get it back.  If you lose your facial aspects they can come back after treatment.  There are no guarantees only stats and hope and prayer.

When I started researching doctors in Fl most of them were skull based doctors and listed AN's if they had any experience with them.  I know Dr. Brem at Moffitt list skull based then listed the various aspects of what else he focused on in treatment.  Most major hospital areas have web pages now giving you a pretty good idea of who does what. 

Since I know I'm getting winded I'm going to stop but please know we're here.  We answer questions if we can as you seek treatment.  Many of us will even talk over the phone if you need that.  Hugs those babies of yours calm down and you will get through this!

[Cheryl R]

Kippy.       I am wondering if you need to try some eye drop to see if that helps the feeling in the eye.    Drops may not do and a favorite is Refresh Liquigel.       Facial function can return after surgery if the tumor has  damaged the facial nerve but it may take several months. 
 I had my surgery at Univ of Iowa where the skull base surgery is part of the oto dept and the neurotologist does the AN's on a weekly basis.            The cyst may complicate matters in that dept.        I am thinking this is what my husbands cousins son had but he had multiple cysts and had surgery in Seattle.so do not know what type of surgeon he had.   They live in Montana.
A consult with House in LA would be good.
                    Good luck to you thru all this.                         Cheryl R.
       

[Joef]

you can get the number and info at  http://www.houseearclinic.com/losangeles.htm , I highly recommend these guys .. but then again, I am bias sent I went there, and thought it was great!

sorry to say with a tumor that size, there is a good chance you lose your hearing , but fear not .. its really not that big of a deal, and you can get the BAHA hearing aid helps .. the eye and facial issues are more of a problem .. and odds are you will have some facial weakness for a while, but it should come back ...

[Lisa Peele]

I'm a 40 year old mother with 4 children ages 2-13. I live in the Atlanta metropolitan area. My ENT ordered an MRI of my brain. I had my MRI this week, and I found out I have (The MRI imaging report is in quotations below):

 
1. Acoustic Neuroma benign tumor (in inner ear) at approx 3 cm. "Approx 28X27X24 MM homogeneously enhancing extraaxial mass within the right cerebellopontine angle. The mass appears to extend into the right porus acusticus, which would favor the diagnosis of Acoustic Neuroma over Meningioma."

2. Arachnoid Cyst which impacts the brain stem. "Mass effect upon the right cerebellopontine angle with leftward deviation of the fourth ventricle but no hydrocephalus. There is trapping of CSF within the right cerebellopontine angle cistern."

 
Yesterday I saw 2 neurosurgeons in Atlanta. Dr. Murphy told me about the surgery aspects of AN. However, he said it really looked like a Menigioma to him. He said that we wouldn't really know until after surgery. He told me to see Andrew Reisner for the Gamma Knife perspective. Andrew Reisner is a pediatric neurosurgeon, who also see adults. So yesterday, I obtained as much info as a person can in one day from these 2 polite doctors.

However, I have a few questions.

1. Does having an Arachnoid Cyst complicate my AN situation? If I choose Gamma Knife for my AN, how will this affect my AC (Arachnoid Cyst)?

2. Sometimes you just want to find the best doctor, and let your faith lead you. Especially when you feel a little light headed already...doing extra research is kind of hard. So I have been told I need to see a Skull-based doctor for my AC, and a neurosurgeon for my AN. This is too hard for me. It's hard enough finding one doctor, much less two. Can't I find one doctor who is an expert in both of these things?

3. I have lost a little of my hearing in my right ear...high frequencies only. I have ringing in my right ear, which started about 2 months ago. Starting last week, I am experiencing pressure in my right ear. Starting today, my right eye feels like it has Novacaine in it, and I have strange sensations like a feather is tickling my eye lid when I blink. I've been told that I need treatment within 30-60 days. However, it seems that I'm developing new symptoms frequently now...shouldn't I find a doctor soon in case I wake up one mornining, and I have lost the ability to blink, or something gets worse?

4. Which is best for me Gamma Knife or surgery? If I do surgery, I'd like to do something minimumly invasive. Any suggestions on the best options for me?

5. Each surgeon has their preferred method of treatment. How do I find the best treatments and the best doctors?

6. A friend of mine lost her ability to blink her left eye (before AN surgery). Her AN surgery did not correct this. If you lose function in a facial muscle, or lose hearing due to AN symptoms, is it possible to regain these abilities after surgery, or are they lost forever? This is why I don't want to wait until I lose function of a facial muscle before I get treated. It seems more immediate than 30-60 days to me. Please advise.

 

 ****If you know of an expert who could handle both of these (AN and AC), I would be so appreciative. I sure would like to preserve my hearing and facial muscle function if at all possible. Is there anyone in the country who has experience with saving the hearing and facial muscles, or even repairing these if function has been lost?

 

Thanks so much.

I am a mom of 4 also (my 5th is due in August).  My kids were 2, 5, 7 and 8 when I was diagnosed at age 34.  I'm from Ohio, had a 4+ cm tumor, and had it removed 2 weeks after diagnosis at the House Clinic in L.A.   I am 2 years post-op and doing great, with no residual issues other than hearing loss in my right ear.  If you view my profile and scroll down to read my previous posts you'll find information on many of the things you may be thinking about right now...from treatment and recovery to how to handle this with the kids.  I am willing to help in any way I can! 

[kippy6]

Hi there - I posted once, but it did not go through because I received 2 replies while I was posting.

I can tell that there are so many caring people on this board. Thanks so much. I haven't been stressed about this so far - I just typically ask a lot of questions. My husband is stressed enough for the both of us though.

As far as seeing a team of doctors, how do I see the whole team? What kinds of doctors constitute a team? I know a neurosurgeon and a skull-based doctor are two...are there more? I've been sent to see one doctor at a time, and it is exhausting. It would be so much easier if I could just meet with the whole team. It makes getting 2nd opinions very difficult. If there are 3 doctors per team...that's 3 doctor visits just to meet each team member!

Wife4life - Your surgery is right around the corner. Who is doing your surgery and where? I will pray for you.

Tumor mom - I'm so glad the surgery on your daughter went well. I'd like to stay in the Atlanta area due to not wanting to leave my children. But my husband would like for me to go to California.

Batty princess - thanks for the info on the House in LA. Their name keeps coming up over and over again. That is so cool they'll review it for free. I'll get my MRI on CD by next Wedesday, and I'll send it then. Thanks for the suggestion!

CherylR - thanks for your suggestion on the eye drops. My eye actually feels better now, but it is good to know that there is something out there to try.

Joef - thanks for your info on the house ear clinic. It's nice to have direct info -- it just makes contacting them faster. I think I'll lose my hearing too. I'm okay with that.

Lisa Peele - I read your profile at the bottom of your reply. How do I get to your previous posts? I'm very impressed that you went to California with 4 children at the time. I imagine your children stayed in Ohio with relatives or friends. I do want to find out how you did it, and how you managed the care of your children. To me, that is one of the toughest decisions, is IF I have to have surgery, what do I do with my sweet children?

[kippy6]

Sorry for posting again - my husband wants to know why a person would not have the Gamma Knife or other kind of radiation.

[Battyp]

Tough question..I know for me I didn't have the choice.
Given the choice I dont' know if I would have gone that route or not due to someone locally I know who had some major complications which cost him his quality of life. 
If not for that then I think I would try non invasive before invasive.  There is that treatment then the waiting to see if it worked or not that emotionally some can't handle.

[Joef]

the current "wisdom" is anything over 3cm (or pressing on the brain) you don't want GK or radiation because of the accuracy ! you don't want to radiate your brain !! or the swelling that normally occurs with radiation will cause the tumor to get so big it causes other problems ...

at least that my opinion.. others my differ

[tony]

There are a few reasons why people are sometimes anti radiation
1. It is believed by some that tumours can, and do, sometimes, turn malignent
as a result of radiation - the stats suggest around 1% may - but strangley
it is surgeons who tend to shout the loudest about it...
I wonder why......
2. Radiation does not "remove" the tumour - it seeks to kill it
and in most cases does.But it might take 12-18ths before you really know
 Sometimes it does not - resulting in actual surgery required
perhaps 3 to 5% require further surgery ()
Some (surgeons) say the surgery is harder as a result of the earlier treatment.
I just dont know on this one - other surgeons seem to  disagree.
In some cases people just want the thing out full stop.
3. People fear radiation - I understand this
but I fear surgery just as much so...
Overall there are pros and cons
I guess its always your life (and choice) to make
Best Regards
Tony

[Lisa Peele]

To view my posts, just click on my username & that will take you to my profile.  If you scroll down to the bottom of the box, you'll be able to click on "view the last posts of this person" and they will all pop up.  Scroll through for the topics you are interested in.  

It is a really tough choice to leave the children.  BUT, you will be away from them and unable to care for them when you are in the hospital regardless.  If you end up with a less experienced surgical team and more complications, you will be unable to resume your regular routine for a longer period of time than you will if you have the least complications possible.  Also, the longer you are in surgery, the longer it will take to get your stamina back afterward.  Hence, shorter surgery generally means shorter recovery time.  I had a really large tumor, yet the removal only took 3 1/2 hours...compared what I was quoted locally (8-18 hrs. in surgery), Ithink that made a huge difference in getting back to normal quickly.  If I would have had surgery in town, I could have been in the hospital for two weeks alone and then needed lots of help when I finally returned home.  As it was, by the time I got back from California (2 weeks to the day after surgery), I was in really good shape.  I looked normal to the kids, and felt much better than I thought I would.  In short, I was able to do the large part of my recovering away from them...and was doing great by the time they finally saw me.

My mom came in from Missouri to stay with the kids while we were gone.  My dad was here for part of the time as well, and my sister-in-law came from Iowa for a week around the time I got home.  Neighbors and friends wanted to help, and I thought the best way was to bring in meals for my parents and the kids while we were away, so they weren't responsible for as much grocery shopping and meal preparation.  That helped greatly.  I can tell you more about how this was coordinated in a personal email if you are interested.

Please let me know what other questions you have about the surgery, travel or how to handle the kids.  I know how stressful this is, and I would love to be of help.

You are asking all the right questions!  I know you'll make a great decision for treatment and make sure everything is in order for your family.  The time between diagnosis and treatment is the hardest part.  Soon, you'll be here on the other side helping others make it though this as well.  I am wishing you only the best!  Let me know what else I can do...

Lisa

[Joef]

Hi Lisa! remember me? .. your PM's to me were very helpful in my start of all this AN stuff..Thanks again!

Mine was not so easy,  even Dr  Hitselberger told me my tumor was hard to take out, it took a full 6 hours to get out (It never takes more than 6 hours at House, I bet they have an egg timer to go by, and cut the nerves when they run out of time, and graft the nerves ) and ended up having a stoke at the end of the surgery .. I know Dr. Hit's has done 1000's of these procedures, If he said it was hard.. it would of given my local dr fits!!..... I still have facial issues, but otherwise feel better than I have in years!!...kippy, if you stay local Its important that you get a Dr. with lots a experience with AN's ..

[tumor mom]

Hi Joef,

Just want to respond on the fact that surgeries are never longer than 6 hours at House.  That is the usual but with my daughter her tumor was so sticky and big and cystic that it took Drs. Friedman and Schwartz 11 hours but she came through with flying colors and that is what is important - they didn't cut the facial nerve and other than being tired for months after (which is normal anyway from major surgery) she bounced back and one would never know she had brain surgery.  People are always shocked when she tells them!!!    A good team truly makes a difference - We had doctors who wanted to do her surgery in two parts and they were quoting 11- 13 hours for each surgery - so I too am biased when it comes to HEI but if that is the type of surgery they're doing on a daily basis they have to be better than someone that sees these tumors once or twice a month (my biased opinion once again). 

As we've all said before research and also try and contact people who have used your doctor for the same operation and find out how they're doing now.   HEI will give you a list of names but I also contacted people that were on this website to get other opinions because I didn't want " just the good cases" - I have to say I couldn't find anyone who would tell me not to go there.   Every case is different but I believe that with AN's the more the doctors see and operate on - the better chances you have to get your life back.

Donna