ANA Discussion Forum
General Category => AN Issues => Topic started by: damien8 on April 18, 2010, 11:20:03 pm
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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
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In case it helps, my mother is 67.
Thank you again :)
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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
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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 ;D
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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
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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
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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
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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
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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
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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!
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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 ;D
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 :)
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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
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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 :)
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Has anyone else seen this doctor in Toronto?
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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
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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
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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!
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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.
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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
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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
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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
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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
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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!
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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
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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
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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
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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
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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
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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
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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 :)
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Nice to hear from you Damien.
Glad to hear that your mom is having some positive experiences - hope that continues.
Has she decided on any treatment at this point, or will she continue to watch & wait?
Jan
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Nice to hear from you Damien.
Glad to hear that your mom is having some positive experiences - hope that continues.
Has she decided on any treatment at this point, or will she continue to watch & wait?
Jan
Hi Jan,
She has decided to W&W on the doctors recommendation.
She has her second MRI coming in November.
How are you coming along?
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I'm great. My surgery was a little over 3 years ago and other than being SSD, nothing has really changed for me.
A BAHA helps me with the SSD, so I have no complaints.
Jan
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Hi Damien and Helen:
Another Canadian here but from the other side of Canada - near Vancouver. I had my surgery nearly nine years ago with Dr. Durity ( head of neurosurgery at Vancouver General Hospital at the time). He has since retired and a very skilled (from what I heard) Dr. Akagami has taken over from him.
I was told at the time of diagnosis that, if I were older, watch and wait would have been an option but I was 41 at the time and decided to go for surgery. I just wanted to welcome you to this forum and wish you well.
Cecile