My mother has AN - I'm worried :(

[damien8]

Hello all,

I'm writing from Toronto, Canada.

My mother was diagnosed with AN about 6 months ago after having about a year of hearing difficulty.

The doctor said that the tumor seemed small, and they would do another MRI in November to see it's growth.

Since her appointment, she has had a few strange symptoms that we think are related to the tumor.

About a month ago, my mother called me and told me that she had a scare when one side of her face seized up, and was sort of distorted. At first we were concerned it might be a stroke, but after going to the hospital, they said they didn't think there was any concern.

She has since had 5 or more of the same facial episode.

She also has had a couple of bouts of balance loss, where she describes it as the room turning sideways.

I'm very concerned, and I just wanted to know if this is normal for someone with AN, and what you might suggest at this point. I am trying to find another doctor to get another opinion.

Any info or suggestions would be most greatly appreciated.

Kindest regards,



Damien

[damien8]

In case it helps, my mother is 67.

Thank you again

[james e]

Those are symptoms of AN, but could be symptoms of other causes. However since she already knows she has AN, she is probably going through typical AN problems. And by saying typical, I do not mean to diminish what she is going through. I am a 60 year old man, just had surgery less than a month ago, and you can tell your Mom that there is light at the end of the tunnel. You would do her a huge favor by getting her on this forum, and let her communicate with all of the people here. We have big hearts here, not just for your Mom, but for her family as well. Good luck you to both of you.

James

[LisaP]

Hi Damien,

James is right, have your mom get on this forum and ask questions and read as much as possible.  When is her next MRI?  Also if she is scared could she call her doctor?  When was the last time she/he saw her.  Hang in there and your mom is so lucky to have you and your support.  Having an AN is scary but knowledge helps.  I was dx back  in March 0f 08 and I am currently Watching and Waiting.  My next MRI is not until this Oct.  So some of us are living with this and have not sought treatment yet.

Best wishes,

LisaP

[leapyrtwins]

Damien -

although I'm not a doctor, it sounds to me like your mom's AN is causing problems with her facial nerve.  She should call her doctor and see if she can schedule her next MRI before November. 

Her AN may or may not be growing, but if it is causing problems in the form of increased symptoms, she should consider treatment sooner rather than later.

Please keep us posted.

Jan

[Cheryl R]

Damien,   This type of tumor can cause a whole range of symptoms even with being small.  It's location is a big factor.  67 is not too old for AN surgery.       One needs to make sure and be with a dr who has lots of experience in taking care of an AN.     There is a chance it could be on the facial nerve but also just pushing on it as think if was a facial tumor than would have her symptoms more often.    I did have a facial tumor and mine just was causing a little droop and no spasms as such.      Everyone varies with this.  If you might not even know if it is facial till actually have surgery also.               
Good luck to your mom and know life is not over with this.                         Cheryl R

[CHD63]

Hi Damien and welcome to this forum.  You have come to the right place for information and much support and empathy.

You have already received good advice here.  However, I would emphasize what Jan said.  If your mother's facial symptoms have increased this much since she last saw her doctor, she should schedule another appointment soon.  Although the size of her AN seems small, it is the location that is equally important.  If her symptoms are changing and/or rapidly increasing, she needs to alert her doctor to the new developments.

..... and as Cheryl said, she needs to be seen by a doctor who has treated many, many ANs.  Since ANs are relatively rare, not every doctor has seen/treated very many of them.

Best thoughts.  Clarice

[Lizard]

Again I echo Jan and Clarice, if the symptoms your mother is experiencing seem to be increasing it might be time to determine which treatment route is most appropriate.

Welcome to the forum and we are here for whatever questions or concerns you may have
Liz

[yardtick]

Damien,

I just live down the QEW from you and I see Dr Rutka @ the Toronto General.  He always tells me just before I leave from an appointment that if I experience any distortion of my face, I am to call his service and promptly get to the Toronto General Hospital. 

You need to get her an appointment with the Dr that is taking care of her as soon as possible and do not take no for answer.  Who is she seeing?  Go with her to her her appointment.  The MRI can be moved up, trust me!!  I've had two within a 10 day period.  How big is your mother's AN?   

Take care of her and yourself,
Anne Marie

[damien8]

Thank you for your reply Anne Marie.

Sorry to hear you're also dealing with the facial distortion. Does your doctor suggest you get to the hospital every time you have an episode??

If you could provide the contact number for that recommended doctor, I would really appreciate it.

He's an ENT correct? I wasn't sure if I should be looking for an ENT or Neurologist for her?

Her last ENT sent her to see Dr. Chen (neurosurgeon) in Toronto.

I appreciate your help!

Thanks again!

[damien8]

Hi Damien,

James is right, have your mom get on this forum and ask questions and read as much as possible.  When is her next MRI?  Also if she is scared could she call her doctor?  When was the last time she/he saw her.  Hang in there and your mom is so lucky to have you and your support.  Having an AN is scary but knowledge helps.  I was dx back  in March 0f 08 and I am currently Watching and Waiting.  My next MRI is not until this Oct.  So some of us are living with this and have not sought treatment yet.

Best wishes,

LisaP

Thank you guys!

My mother isn't the most technical savvy, so I'll be on here communicating what I get from her.

I think at this point, it's time to find a doctor with more experience in this area. She has seen one ENT, and one Neurosurgeon thus far. The Neuro said that she should come back in November for another MRI to determine if there is any change in the size of the tumor.

But I guess now after reading, it seems she should be getting another MRI and expert opinion sooner than November!

Again, and input is appreciated.

Thank you all again

[mk]

Balance episodes are common with ANs, no matter what the size is.

Facial episodes like the ones you are describing though are not common pre-treatment. Most ANs are involved with the facial nerve (since the nerves run parallel), but they won't cause these symptoms. The facial nerve is quite resilient, and can be stretched out without giving major symptoms.  I will agree with the others, that this may be pointing out to a facial neuroma (hard to tell from the MRI though). You may need someone to take a more careful look at the existing MRI - Dr. Rutka that Anne-Marie mentioned is THE expert in the field.

Marianna

[damien8]

Balance episodes are common with ANs, no matter what the size is.

Facial episodes like the ones you are describing though are not common pre-treatment. Most ANs are involved with the facial nerve (since the nerves run parallel), but they won't cause these symptoms. The facial nerve is quite resilient, and can be stretched out without giving major symptoms.  I will agree with the others, that this may be pointing out to a facial neuroma (hard to tell from the MRI though). You may need someone to take a more careful look at the existing MRI - Dr. Rutka that Anne-Marie mentioned is THE expert in the field.

Marianna

Thank you Marianna.

So of everyone in the Toronto/GTA area, you would suggest Dr. Rutka as the best?

Again, I appreciate your advice

[damien8]

Has anyone else seen this doctor in Toronto?

[mk]

Just on top of my head, I know that Ann Marie and Trish (Calimama) have him. Ann (Keeping Up) is seeing someone else from the same practice. I also know that Nikki (opp2) has researched many doctors in Ontario.
Rutka is a neurotologist, does surgery alongside the neurosurgeons, he is the head of ... something ... something of neurosurgery at the University of Toronto and would seem to me as a good starting point. I was never his patient, and don't know the contact info, but I am sure Ann Marie can share it with you if you PM her.

Marianna