ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: opp2 on October 22, 2009, 08:29:59 pm
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Ok I know we can't curse on this forum. As a former military person, and a police officer sometimes I like to 'get my feelings out'. I received a call yesterday that my family doctors office saying the surgeon (Dr. Akagami she said) wanted to see me earlier. They had booked me for an mri tomorrow (today) and could I make it. Well of course I can make it. Then they said he wouldn't see me if I couldn't get all the appts in before Nov 5th (meaning an audiometric exam). Of course I said, whatever I have to do. I expected an email from Dr A's office confirming same, but got none. So off I go mid work day today for my MRI but before I go I call the family doctor and say I need to confirm I have an appt in BC on Nov 5th because I've purchased flights for January and I will need to change them.
The other shoe drops. You're not going to BC she says, the doctors phone number is a 416 number, that's here (yes it is). So I dig deeper. There is another surgeon who I asked for a referral to 6 weeks ago at the same time as Dr.A. It's his office that has finally called to make an appt. HOLY HECK! 6 weeks to make a phone call for a referral and you want me to jump through hoops for you too????
Of course I jumped. Better to be able to say to OHIP I researched all my options before heading to BC...but this truly gives you an idea how the Canadian system sometimes works. The Doc (bless him) has had my referal fax for SIX WEEKS. They call and want me to have an MRI and audiometric testing before Nov 5th. Jebus H. Hockey Player!!!
ok so the MRI was ok...shows, from what I can tell, 1mm of growth since the April MRI. (April contrast, Jun and Oct no contrast, Jun vs Oct depending on the file you look at between 0-2mm growth) Fiddle heads!!
I am going to see what the Ont. Surgeon says about growth and send the new MRI to Vancouver.
Be your own advocate. Look out for yourself. The doctors in this world work in some pretty mysterious ways.
Just venting here. I am OK>>>>> ;D
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The system does work in mysterious ways.
[Off topic - Were you reserves? or regular force? I was reserves in the medical corp because I wanted to go to medical school but ultimately ended up in officer training (hated it) and became a finance type! Calimama, a fellow Torontian and ANer and new mom to twins and Cali of course, was also a reservist. Just curious. Not a huge contingent of military types in Ontario, let alone 3 girls all with ANs!]
Of note, we both were seen at the same ENT practice - are you going to Toronto General by chance (ENT surgeon type) or Toronto Western if neurosurgeon? WE have several Sunnybrook types here as well - I don't know the names up there. It took me 5.5 months to get the appointment with the neurosurgeon at Toronto Western - 3 months probably to get the referral. I really liked him. Things move slowly - but as I always say, things only move fast in this province when it is serious. A malignant brain tumor you would have been seen in a week. These benign suckers make you queue. Means the doctors are really busy which is good.
I am contemplating getting a referral to another surgeon not at all because I don't like the doctors I have seen but a referral (even if it does take 6 months) might make a bit of sense. A family friend unfortunately has a malignant brain tumor. He was a cardiac surgeon at a big hospital in Toronto (so in the know) and went to a neurosurgeon at ST. Mike's - specifically waiting for this particular doctor - to remove his tumor. I will get his surgeon's name probably next week and see if I can get a consult (he mightn't treat these types of tumors but still I probably can get a list of the 'best' in the city for ANs (I gander, as you might have already guessed, I am already with one of the best teams.) So, if you are going to St. Mike's for a consult, would you mind sharing his (or her) name please too!
Good luck on November 5!
Ann
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I was reg force, med A trade in Petawawa. The Dr. is Dr Guha. He is recently returned to practice after suffering his own misfortune with cancer. Hence bless him. I am so hopeful his treatments were successful, and given that he is seeing patients, that must be a yes.
I was just venting. I feel like I'm ok with everything, and the I guess when it changes like this it kind of knocks the wind out of you. Only you didn't realize you'd been holding your breath this whole time anyway.
S*t!
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Hi there, being in the Canadian system as well, I can agree that it is a bit on the conservative side but like Ann said, had this been of more danger, they would have rushed you right in. A friend of mine, her son went to emergency with a bad headache one night and was transferred the same night here in Toronto to another hospital and in surgery hours later for a malignat brain tumour. The doctors moved so fast in this case.
I have to agree that the doctors won't jump in for treatment unless absolutely necessary. I think this is a good thing in a way. There are a few surgeons here in Toronto with great experience in this type of tumour. I am being followed by a Neurosurgeon at Sunnybrook who is also the head of the gammaknife clinic at Toronto Western. I was pleased with their assessment. Although I still need to make a decision on whether to do treatment now or later which they left up to me to decide. So now I remain in limbo state.
Vivian
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http://anausa.org/forum/index.php?PHPSESSID=1ffc8c948adf268151c7003cb5814831;topic=10862.msg126667#msg126667 (http://anausa.org/forum/index.php?PHPSESSID=1ffc8c948adf268151c7003cb5814831;topic=10862.msg126667#msg126667)
this is the link to my consult results from this afternoon.
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haha...I can't believe how upset I was before. I'm so ..................relaxed now.
I met with Dr. Rutka today, Dr. Guha's associate ENT surgeon. He was pretty cool. I had a workup by a med student who admitted that I knew more about AN than he did. I told him I'd had plenty of time to study one ailment, he has to learn thousands so don't be so hard on yourself.
After that I met with Dr. R. I like his open frank honesty. A whole new nerve set is involved with this tumour. Apparently my swallowing nerve (vagus??) is affected. My tumour is low and pushing on the nerves at the base of the brain stem as well. He indicated he was surprised I didn't have more optical issues and poked me in the eye with a tissue. (I am beginning to despise that). He then tested the sensation at the back of my throat. My gag reflex is right on the money (sorry if that is TMI) however I could not feel him scratching way at the back of my throat with this poking thing. (very scientific I know). I also had some new balance tests which I failed miserably, and I'd arrest me if I did that at the station house.
Anyway, he also recommends translab. (What is it with that?) and advised his results are usually about 80% success regarding facial nerve. He says my facial nerve is in good shape, it's my trigeminal that is being pressed and causing the other issues. He also was surprised at my walking issues that I described in another post somewhere and said they didn't usually see those until tumours got quite large. He also said they would do debulking, but if the facial nerve was showing stress. I don't think he quite understood that I would be asking that they intentionally leave some tumour behind before they 'sense' any stress on the nerve. He was in agreement that the remainder of the tumour could be zapped later if need be.
I am to be scheduled for hearing and balance testing (the more mechanical type I guess, rather than walk the line) in the near future. Despite the fact that I was there for 3.25 hours, it was fun. Nice to see all the students in action. Poor Kid. I think it was quite intimidating for him, but he'll make a fine doctor some day... ;D
So Dr. G on Thursday next, Dr A the following Mon and Dr Westerberg the Wed after that, and I should have decision by Thursday!!!
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Jebus H. Hockey Player...LOL!
What size is your AN?
DJ
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2.9 x 2.3 ish today. Depends on who measures it. :-\
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Well, there may be a few body parts that are not quite the way they should be, but at least your sense of humor is completely intact! ;D
I'm glad to hear you're relaxed and I'm sure you'll be even more so once you have all the information you need from the tests.
By the way, I hate the tissue in the eye thing too. And I got jabbed in the tongue with the wooden stick part of a cotton swab. Fortunately, I didn't feel that.
Good luck!
Lori
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Nikki ~
After everything you've been through it's good to see you feeling calm and confident as you proceed with your evaluations, consultations and, ultimately, a decision.
Jim
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Hi Nikki,
Dr Rutka is the man. He spends quality time with you. I have asked him many, many questions over the last three years, he has always been patient and kind. I've even emailed him on occasion and he has responded in a timely fashion.
So your tumour is a little more involved. I'm sorry to hear that but I know you are in good hands.
Hang in there Nikki,
Anne Marie
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Just got my balance and hearing test appt Thursday 8 before I see the GooMan at 10:30.
Can anyone tell me what to expect. The girl said it would be 1.5 - 2 hrs all in.