ANA Discussion Forum
General Category => AN Issues => Topic started by: opp2 on September 01, 2009, 06:27:24 pm
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I thought I should drop a note to say Hi since I've been browsing and posted a couple of times. I'm Nikki from a medium sized city near Toronto. I was diagnosed with left side AN after asking my family doctor to refer me for an MRI and then telling her I wanted to go to the US instead of waiting. Thankfully she was good enough to give me the referral.
April 14th I brought home my disc and of course I looked at it. From my years of anatomy and physiology study I knew that big white thing probably shouldn't be there.
As a result I was referred to a top notch set of surgeons here in Ontario. My only problem is I'm having trouble accepting their probabilities for facial outcomes and have recently been looking and have spoken to Dr. Friedman at House.
I'll let you know what I decide, but at this point it looks like I'll be making my 3rd trip to California sooner than I had planned.
Nice to 'meet' you all here.
Nikki
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Nikki,
Welcome to the forum. Like you, I asked for my MRI too and turned up with a "white"spot too. We all know that feeling.
What size is your tumor?
I went to House too!
All the Best,
Kate
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Best of luck to you Nikki! You are doing just the right thing in checking options and finding what is best for you. Glad you introduced yourself - keep us posted!
Kathy
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Hi Nikki,
Glad you posted about your concerns, there are lots of people here to help you deal with the what "ifs". They will also be here for you when the facts are in. If you don't mind my asking, what are the facial probabilities you are dealing with? My doctor told me I had an AN and the day before surgery found out I had a Facial Neuroma, no time to prepare for the outcome. It was probably better that way, no pre-worries just dealing with the outcome. I have some permanent paralysis, can't smile, eye issues, use ointment constantly. However, I have a full time job which shows I've worked around the issues. My surgery was in 92 and all in all I'm doing fine, wish things were different sometimes but who doesn't, good luck! Jill
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We have all been in your shoes, and we are here to support you as you find your way through this. There IS life on the other side! Let us know what you find out and we will walk you through it!
Priscilla
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Hi Nikki ......
..... and welcome to this forum!
You are so right to explore your options. Getting the physicians with the most experience is so important. I pray that it will all work out for a completely successful removal with an intact facial nerve.
Just know that we are here to support you in whatever decision is made and whatever your outcome.
Clarice
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Not much to add except welcome to our group. I too am curious as to the size, but realize that's not really what determines your outcome. Glad you are looking into all of your options!
Ernie
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Hi Nikki,
I am also from Toronto, Thornhill. I initially went to Buffalo to get my first MRI done as I didn't want to wait 3 months for it. I was too anxious. Who did you see in Toronto? My next MRI is Sep 17/09. I am being followed at Sunnybrook Hospital. Let me know if you need any other information from the doctors I have seen there.
Vivian
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Thank you all for the welcome. My AN is 2.9 long and the "body" of you will is 2.1 is all around. It kind of looks like an apostrophe but the tail isn't so curled. I started suffering very funky headaches about 2.5 years ago. I would get these flashing lights in my eyes and I would have to wait as it spread from a pin point all the way out around my eye and disappear at the side. (20 mins or so) once the lights were gone I'd get this fabulous headache. I saw a neurologist for it and he said I had migraine. Easy enough to diagnose really since it fits the bill. Then I started getting a numbness in my left cheek and half my lip. I spoke to the dentist and the neurologist. The N said come see me if it gets worse. ( :o ) The dentist thought it was kind of odd and sent me to a dental surgeon, who after confirming no problem with the nerve in the jaw, asked if I"d had an MRI. She tried to get me into a neurologist and amazingly enough I got referred back to my same N. I then went to the family doctor and asked for an MRI.
During the past 18 months I've also found that when I stand up I get a pounding and rushing in my head and ears. If I sit down quick enough I can make it go away in about 10-15 seconds. If I can't sit down, I'll get the funky light show etc. This is pretty simple except that I'm a cop, so I can't just plunk myself down in the middle of a call.
About 5 weeks ago now I noticed I've lost the hot/cold sensation in my tongue on the left. I've had great sensitivity to all things hot and spicy for about a year. Not intolerable, just extra hot and extra sting.
I have moderate hearing loss in that ear which at the time I attributed to an incident (1998) where I fired my handgun without ear plugs. I suffered tinnitus right away and have had it since. Sadly the AN is too large to attempt to save the hearing in that ear.
I'm a 44 year old mother of 2 little ones, my youngest is heading to JK next week.
So that's my story.
oh and the only people that know around me are my husband, my parents and my mother in law.
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Hi Nikki,
I recall seeing your post on the ANAC board. Welcome to ANA as well.
There are quite a few of us here in Ontario. The size of my AN is similar to yours, although I only had the numbness/odd taste issues, and I have been fortunate that I am pretty much asymptomatic other than that. It is probably a matter of location.
There are some excellent options in Ontario (Toronto University Hospital Network, as well as an experienced team in London Ontario). Where are you from?
Having young kids and a demanding job is certainly a big worry, so I can understand how you feel. I had the same concern too, which more or less made me chose GK treatment instead of surgery.
You still have some time to do your research, although given the size of your AN it will probably be advisable to seek treatment sooner rather than later. Use this time to research your options as much as possible - and chose the best team possible, which should be easier if you are close to a major centre like Toronto.
As I mentioned already, there are many ANers from Ontario here, so they can probably chime in on the issue of doctor selection. Don't hesitate to send me a PM if you need more information.
All the best,
Marianna
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Hi Nikki. I am sorry to hear you have an AN, but you are in the right place to find answers and peace with your decisions. I had a large AN removed by Friedman in May of this year and I am doing great! Please, ask questions and take deep breaths often ;)
Alicia
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HI Nikki,
Welcome to this exclusive club.
So glad you got some feedback from fellow Canadians and also there are a lot of people from House.
We're here to offer support, be your sounding board, whatever :)
It's great to have a place to vent and ask questions, because we KNOW what you are going through and will be going through. ;)
Maureen
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Hello and welcome, Nikki.
Thanks for your posts and providing us with the particulars about your AN as well as some personal information. Although I'm never happy to learn of another person being diagnosed with an acoustic neuroma, I'm always pleased when that person chooses to use the ANA website and participate in our forums, as you have. This is obviously a time for conducting some personal AN research so you can make an informed evaluation of your condition and reach a decision regarding treatment (surgery or irradiation) the doctors you'll use and where you'll go for that treatment (Canada or the U.S.). Although these are all serious choices and can only be made by you (hereafter known as 'the AN patient') we collectively stand ready to help you with information and advice (when solicited) as well as our full support for whatever path you chose to take from this point on. Personally, I wish you all the best. :)
Jim
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Hi Nikki
I to am from Ontario, closer to Ottawa....The first ENT I went to said my unilateral hearing lose was due to aging...I was 47 at that time...I demanded from my GP to see an ENT of my choide in Ottawa upon which he did ABR and ENG test..Then he wanted and MRI to eliminate the possibliity of a tumor...but the wait would be 9 months...Noway was I waiting 9 months to a yr wondering if I have a tumor or not...so I went to a private clinick in Quebec. Having the cd I too looked at it and knew there was a tumor....I found this site and did my research...I went with surgery with the team of Benoit and Schramm. I have no facial paralysis, little balance issues unless tired or suffer from mid grade headaches...and wonky head still affects me every now and then..you've come to the right place for info...
Jo
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Hello Nikki and welcome to an exclusive club. Unfortunately its not "that" kind of exclusive club. I would have preferred to receive an invite to Augusta National...
You will find many, many helpful individuals here. The amount of information I was able to gather in the first week or two following my discovery was amazing. Thanks to the members of this forum and the ANA in general I have been able to set-up several face-to-face consults armed with the relevant questions and follow-ups. IMO this would have taken me months, not weeks, without the good folks here.
I'm heading to House in mid-September for a consult with Dr. Brackmann. Please let us know how your search progresses and remember that you are not alone!
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I went to House for the surgery to remove my ginormous tumor and was very happy with my treatment there. Unfortunately, they were not able to keep my facial nerve intact, but they did a successful graft and I am doing very well with that. Dr Brackmann was awesome.
My face is not 100% (10 1/2 months out), but other than that, the whole ordeal is just a bad memory.
Vonda
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Hi Nikki
Welcome - I am a Toronto girl, west end. I am very lucky and only have a very small, pretty much asymptomatic tumor (save tinnitus and hearing loss, mild at this point). So, I am just waiting & watching - I am blessed.
I am being monitored by an awesome team at the University Health Network (Toronto General for the ENT but also saw the GK team and the neurosurgeon who are both at Toronto Western ... the MRIs are done at Princess Margaret so I cover off the whole 'network'. I have really like most of the team. Overall, a great team of professionals. And, to save some face for the Ontario health system, it took me less than 10 days to get a MRI which is pretty darn awesome!
Good luck with your research. Based on the doctor's I have met, I feel no reason to go to the US for treatment - I think we have some of the best in the world. I, of course, can only comment on the doctors in Toronto, many of whom are associated with the U of Toronto medical school. There is nothing second rate about any of the professionals I have met. But, it does take longer to get treatment, especially if not urgent (like my tumor).
You will meet many ontario types on the forum (not sure how many police officers) and many working moms with many kidlets (I have four).
also ... check your benefits, you may be surprised to find out it is a covered condition in your 'critical illness policy'. I find out on Tuesday or Wednesday if my tumor will be covered (the preliminary message is YES as my policy specifically includes cranial nerve benign tumors, even without pathology reports or surgery).
Ann
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Thanks everyone for your kind words of wisdom and support.
Keeping up, my little ones are 7 and 4. My WeeMan starts JK this week.
I sent my MRI to House and am seriously considering heading there. Not because I don't like my surgeons here, but because I am way more comfortable after 4 telephone consults with Dr. Friedman than I was with 1 face to face and 3 email consults with my Toronto guy.
I believe that the Drs. in Toronto are top notch, the two I've been sent to are both heads of their divisions at their respective hospitals, so they got some good smarts ;-). This isn't an easy decision, but one based more on the opportunities that my Drs have to perform this kind of surgery as opposed to the opportunities to the Drs at House. (2-3 times a week compared to 2-3 every couple of months). My Drs have also been upfront with their success rates at this kind of surgery (regarding facial nerve outcome).
I can't help feeling guilty that I'm looking elsewhere but this is, as you all know, life changing and I want to be sure.
Good luck all! and thanks again, you are great!
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Hi
I am a director of nursing at a large medical center. you are correct when you believe that frequency is best. I had surgery at House in March and that (in addition to the confidence I also got over the phone) is why i ended up there. I lost my hearing in the AN side, but really like is pretty darn good. the care I received from the physicians, Schwartz and Fayad was amazing. Two of the kindest people I have met, and a dedicated nursing staff who a specialist in care of the post op AN patient. whereever you decide to go, make sure this type of surgery is done frequently. My ENT sent me there because of their specialisty/frequency of performing this surgery. my facial nerve is fully intact, balance was an issue but no one could tell but me.
best of luck,
fell free to contact me if you would like
Pam
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I sent my MRI to House and am seriously considering heading there. .... This isn't an easy decision, but one based more on the opportunities that my Drs have to perform this kind of surgery as opposed to the opportunities to the Drs at House. (2-3 times a week compared to 2-3 every couple of months). ...
I can't help feeling guilty that I'm looking elsewhere but this is, as you all know, life changing and I want to be sure.
Nikki,
Experience of the doctor means a lot! 2-3 times a week versus 2-3 every couple of months translates to 16-24 operations in two months as House versus 2-3 every couple of months.
All the best.
Kate
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Nikki,
Experience and frequency are extremely key elements. I can only speak for myself, but I am so very glad that I traveled from New Jersey to Los Angeles to have my translab procedure done at House. I should point out that I really didn't consider going anywhere else -- and I have certainly been convinced by members of this forum that there are excellent AN surgeons and facilities throughout the country -- my local doctor told me that this was the place he would recommend, I checked them out on the internet, spoke with them on the phone, and knew that I had selected the place that would be the best for me. I was delighted with the care I received and my outcome.
Once again, I'd like to stress that good care and successful treatments are certainly not confined to House. It's important that everyone feel confident and comfortable with his/her selection of a doctor and facility.
Best wishes as you continue your research and arrive at the decision that suits you best.
Catherine (JerseyGirl 2)
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I believe that the Drs. in Toronto are top notch...
I can't help feeling guilty that I'm looking elsewhere...
I'm sure the Drs. in Toronto are great nuerosurgeons, and have plenty of work to do without you. :)
Experience really does improve outcomes, and is particularly important if something unusual turns up during surgery. The House doctors (or those at other experienced centers) can say "oh my, that is unusual, we only see this once every two weeks," where some other doctors may not have it seen it at all. That's good to know as they wheel you into the OR.
You get one shot at this, so you need to do what is right for you.
Steve
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Thanks for your note Donnalynn, it means the world!
I have a question about symptoms. I recently began getting headaches on the non AN side while sleeping. If I sleep on the AN side it's all good but if I roll to the other side my head begins to pound. If I roll a pillow up and prop it under my neck on then non AN side it sometimes helps. Yesterday it pounded so bad I had to get up and take an advil then go back to bed.
Any thoughts on this? It's labour day and all the docs are off I would guess. I also have a slight cold with some sinus issues that I thought might be contributing. I went swimming yesterday and had the same kind of pain when I dove 8ft for darts. Never had that before either.
thanks all..
Nikki
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Hi, Nikki - getting here late, but wanted to welcome you. I'm also a House/Dr. Friedman alumn. Have you made a definite decision about your surgery yet? Set a date? As you indicated, this is a pretty big deal, and you need to do what you are absolutely comfortable with.
Best to you,
Cindy
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Hi Nikki.
Another belated 'welcome' to this Forum - you already know the folks here are great!
Best wishes on your AN journey -[been there, still researching myself!]
I have spoken to Dr. Friedman on the phone as well, he sounds very nice and i was really pleased with his quick response.
My thoughts and prayers are with you.
Sincerely,
Sue
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I have a newly diagosed vagal schwannoma. 5.60 cm X 4 cm attached to my 10th crandial nerve and growing up into my jugular foramen. I was also seen in Ontario and was told there was nothing they can do for me. My Dr. also told me that "not a surgeon in the world can help me". I beg to differ that opinion in the States. If I am told the same in the States, then I will rest my case and accept my condition over the next 10 yrs (or sooner), which is NOT good.
I have sent my MRI and CT scan to a Dr. Takanori Fukushima in Carolina however, it may be also advisable as I read, to send it to HOUSE as well.
I am so thankful for this extremely informative site and thank you all!
Nikki, let me know how you make out as well!!!!
Rhonda Edwards
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Rhonda .....
This has to be a very distressing time for you! I do not know that much about vagal schwannomas, but I can tell you that if anyone can help you, Dr. Fukushima can. He did my AN removal surgery 19 months ago and this past July removed the second and very difficult meningioma from a dear friend's head. He did her first one, as well. Both of us are doing well. My friend's second surgery was the more difficult one because it was wound around the brain stem's major blood supply. He could not remove the entire tumor but they are very hopeful it will not regrow.
Please feel free to PM me if you have questions about my experience at Duke with Dr. Fukushima. I highly recommend him and his skill.
Best wishes. Clarice
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Welcome, Nikki. I am sorry about the circumstances that brought you here but glad you found us.
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Hi Nikki,
I'm pretty new at this but I found out that Cyberknife was a good alternative to surgery for my 1.3 cm AN. I just completed my final day of a 3 day Cyberknife treatment at Stanford Hospital in California. It was fairly easy and there's a lot of info out there on Cyberknife. I'm not a medical person but I did some on-line research about surgery and CK and opted for the CK. There are people on this site who also had CK. You could get in touch with them. Also there's a Cyberknife Discussion Forum somewhere, I found a link from someone on this site. Good luck!
-JoyDiane
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Hey Nikki...
this is my first post in months... as i had twin boys in July. you can imagine...
i saw your post and couldn't let it go by without saying hi and passing on my name if you want to chat.
i am in TO too. i live in etobicoke. i now have THREE little ones under three (god help me) at home and am on mat leave for a year. i am 40.
i am sorry and surprised you had to wait so long for an MRI that you chose to go out of country. i got mine in a matter of weeks, late at night mind you... but sobeit.
i had a med-large left AN (in the CPA) with the same dimensions you indicated (big white blob!). my only symptoms were reduced hearing and tinnitus. i had my tumor removed here in TO at TWH in June last year. they took out about 98% so as not to risk my facial nerve. i had some of the problems that are common with this kind of tumor (e.g. facial paralysis) but dodged many more (headaches, dizziness).
i am doing great now, face is about 85% fixed (and i thinik the pregnancy really slowed me down in the middle of this year). i lost hearing on my left side.
i know both 'keeping up' and 'MK' (HI GUYS!!!!!!) on this site... it's great to have a canadian connection, although our friends to the south were no less helpful to me through this whole thing.
i am happy to chat or meet up or email, if i can be of help to you. i d
Trish
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Welcome Nikki,
I too live not too far from Toronto.
Welcome to our neat little club that seems to be growing and growing. It is sad but you have found a great group of people who are in the same boat as you and can truly understand how you feel.
Michelle ;D
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Thanks both Trish and Michelle. I appreciate your responses. Congratulations Trish. I've read some of 'Keepingups' blog...she's one busy Chick. Twins, yes I can imagine, but can't empathize. Twins seem to run in my office. There are 3 girls there right now who have twins after their first, and 4-5 who have departed and gone to other offices. I was really nervous the second time I got pregnant, that is for sure!
I have an appt with Dr. Guha on Nov 5th. He's back practicing I'm happy to tell you. Off to gymnastics!
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Nikki...
yes, i knew that Guha was back. I saw him for my (belated) one year follow up. he reviewed my follow up mri (delayed due to pregnancy and birth). he is really wonderful, and i feel that i decided on surgery (which i was totally against) from meeting with him. Tell him i said hi.
yes, twins are tough, but magic.
good luck, send me a PM if you want.
Trish