Hi

[arkansasfarmgirl]

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

[Keeping Up]

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

[opp2]

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!

[pamk]

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 

[Kate B]

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

[JerseyGirl2]

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)

[sgerrard]

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

[opp2]

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

[cindyj]

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

[suboo73]

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

[petgroomer]

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

[CHD63]

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

[Nani]

Welcome, Nikki.  I am sorry about the circumstances that brought you here but glad you found us.

[JoyDiane]

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

[calimama]

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