My mother has AN - I'm worried :(

[yardtick]

Damien,

You will have to get your Mother's Family Doctor to make the referral.  Does your Mother have a CD copy of her MRI, because Dr Rutka is going to want to review the images.  If not, your Mother has to request a copy from the imagining department at the hospital where she had the MRI. The first appointment with Dr Rutka is rather lengthy and involved.  I would recommend that you accompany her to the appointment.

Dr John Rutka
UHN - TORONTO GENERAL HOSPITAL
7N - 200 ELIZABETH ST
TORONTO ON M5G 2C4
PHONE: 416 340 4630
FAX: 416 340 3327

Anne Marie

[damien8]

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

Hi Anne Marie,

Do you happen to have the contact info for Dr. Rutka?

I found this, but looks like he only deals with children: http://www.ratemds.com/doctor-ratings/30923/ON/Toronto/Rutka

And this guy: http://www.ratemds.com/doctor-ratings/47364/ON/Toronto/Rutka

If you could point me in the right direction, I would appreciate it.

Thanks!

[damien8]

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  

Thank you.

I just found the results from my mothers MRI in Sept. of 2009:

FINDINGS:

There is a lesion filling the left internal auditory canal (IAC) measuring 11 x 6 x 5mm. The lesion is low to intermediate signal on T1 and low signal on T2. No definite cochlear or vestibular involvement is identified. No significant extension is seen into the CP angle cistern. The appearance is consistent with an intracanalicular acoustic schwannoma. The right sided IAC is within normal limits in appearance.

There are few very small (2-3mm) foci of bright signal on FLAIR and T2 within the cerebral white matter seen scattered within the frontal subcortical white matter and right corona radiata. The brain parenchyma is otherwise unremarkable. There is no evidence of hydrocephalus. The visualized intracranial flow voids are unremarkable. No acute abnormality is seen on diffusion weighted imaging.

There is a 7mm synovial cyst along the medial aspect of the left temporomandibular joint.

There is a mild diffuse cerebral atrophy.

IMPRESSION:

Left sided acoustic schwannoma as described. Further assessment with a repeat MRI study with gadolinium enhancement is recommended to best assess the extent of the lesion. This will require new requisition to be submitted.

Minimal scattered nonspecific foci or bright signal on T2 within the cerebral white matter. Mild cerebral atrophy.

Incidental synovial cyst along the medial aspect of the left temporamandibular joint. This should be confirmed as cystic on the post gadolinium study.

[yardtick]

Damien,

I gave you the contact info for Dr Rutka.  From what I'm reading your Mother did not have the dye gadolinium during her MRI.  She needs to get a referral to Dr Rutka and she needs to have the MRI with the gadolinium.

Good luck,
Anne Marie

[yardtick]

Damien,

The Dr James Rutka in the articles is his brother.  Dr James Rutka is at Sick Children's and Dr John Rutka is at Toronto General.  I hope this has cleared the Drs Rutkas up for you.

Anne Marie

[leapyrtwins]

Damien -

have you seen this thread on a doctor in Ontario?

http://anausa.org/forum/index.php?topic=11963.msg137787#msg137787

Perhaps it might help.

Jan

[wendysig]

Damien -

I'm not a doctor either, but I have to agree with Jan that although her tumor is small, it sounds like it could be causing problems.  If possible, she should have a repeat MRI sooner than later to rule out new growth.  Even if there is no new growth, her AN could be causing increasing symptoms that might suggest treatment sooner than later.

Best wishes,
Wendy

[damien8]

Damien -

I'm not a doctor either, but I have to agree with Jan that although her tumor is small, it sounds like it could be causing problems.  If possible, she should have a repeat MRI sooner than later to rule out new growth.  Even if there is no new growth, her AN could be causing increasing symptoms that might suggest treatment sooner than later.

Best wishes,
Wendy

Is there anyone Ontario that might be willing to have a phone call with my mother so she doesn't feel she's the only one going through this. If you happen to be around 60 in age, I think it would give her more comfort as she is 67.

Thank you all again, your help is more than appreciated!

[helenmartha]

Hello all,

I am Damien's mother and I would like to thank all of you for your kind replies and advice.

I am new to this forum stuff, but I look forward to chatting and learning more about AN.

Next week I am going to get a second opinion from a ENT, Dr. Oakley Smith. Does anyone have any Info. on him?

Again I appreciate all your help.


- Helen

[CHD63]

Yeah, Helen!  Glad Damien showed you how to use this forum!  Hopefully we can become a great support group for you.

By the way, my mother's name was Helen and my granddaughter's name is Helen so I love your name!

Sorry I cannot help you with any information about Dr. Oakley Smith, other than on his web site, he is apparently a specialist in reconstructive rhinoplasty.  As we frequently emphasize, it is so very important to choose a doctor who has had much experience in treating acoustic neuromas specifically.  Because they are relatively rare, not all ENTs have had much experience with ANs.  I would certainly ask him how many ANs he has seen or treated in his career.

Best thoughts and let us know how you are doing and any more questions you may have.

Clarice

[helenmartha]

Hi Clarice,

Thank you for the quick reply.  Are you in Canada? 

My son read some favorable data about this ENT guy, and since I wanted a second opinion made an appointment.

What I really need is a neurologist who has expertise in AN and this is where Dr. Smith may be helpful, hopefully.

Glad you love my name.

Helen

[opp2]

Hi Damien and Helen...

I've visited a number of neuro surgeons and ENT in the Toronto area. I saw Dr. Rutka and his associated Dr. Guha at Toronto Western/General through the University Health Network. I also saw Dr. Chen (Sunnybrook) and Dr. Izukawa (The Queensway) who often work together in the Mississauga/Toronto area. I also received telephone consults with Dr. Friedman at House in L.A. and flew to BC to consult with a team out there Dr. Akagami and Westerberg.

Seeking treatment for AN can be very frustrating and time consuming, but well worth the time and effort invested. Be sure to take pen and paper with you to write down what the doctor tells you. There will be so much information that you will be glad you did. Take someone with you to ask questions that you will undoubtedly forget to ask. Do not be afraid to seek more opinions. Knowledge will give you the power to make your choice.

In regard to your facial symptoms, I've suffered numbness on the AN side for a long time, over a year, as well as decreased vision and visual disturbances I think are due to dryness in my left eye. I have very high word recognition but no balance response on that side.  I did in the beginning suffer various facial twitches, nothing major, just eyelid twitching, and then my lip would twitch. My head used to have this kind of twitch thing too, but these symptoms have all faded over the year.

My sister in law suffered a different kind of brain issue called an AVM about 15 years ago. She had surgery but she now suffers from seizures and does have some very obvious, increasing facial twitches etc. It seems to me that when it comes to the brain, anything can really happen. This is the electronic center for all of our nerves...motor, sensory etc. I'm not surprised by symptoms anymore.

Good luck in your search. Perhaps you could try to attend the next ANAC Toronto Chapter meeting. It is on May 25th at 271 Spadina in Toronto. I am going to try to attend this meeting as I think it be my last prior to surgery.

Nikki

[helenmartha]

Hi Nikki,

Thank you for the information. The only neursurgeon I have seen thus far is Dr. Chen. 

He suggested monitoring, adding that something else can kill me before the AN does. Since seeing Dr. Chen I have experienced

quite frequent facial twitches and sporadic staggering.  Did any of these neuro guys suggest monitoring or perhaps your age pecluded

that option.

Could you please let me know what time the meeting is on May 25th.   

The best of luck with your surgery.

Helen

[CHD63]

Helen .....

No, I do not live in Canada.  I live in West Virginia.

Nikki had some excellent comments about medical facilities/doctors in the Toronto area.  I hope you can attend the Toronto support group meeting.  The members there should have much local information.

You should check out the ANAUSA web site:  http://anausa.org/questions_for_physician.shtml for a good list of questions to ask any doctor you see.

Be sure to mention to your doctors that the facial twitches are increasing.  This could be an indication you need treatment sooner than was thought before.

Clarice

[damien8]

Hi guys,

I haven't been on the forum in a while, but thought I would cme by and say hello. I hope you're all doing well.

I also wanted to let you all know that my mother went to see a doctor at Sunnybrook by the name of Nedzelski, and she really came back feeling confident and informed.

Not sure if anyone has been to him, but he was recommended by a highly rated ENT, and was said to be an authority in the AR field.

Chat soon