ANA Discussion Forum
General Category => Inquiries => Topic started by: Carrol on February 22, 2010, 05:20:30 pm
-
Hi Everyone,
I was diagnosed with a 2.0cm AN. I live in Ontario Canada. So far I am very discouraged. My doctor was suppose to refer me to Sunnybrook Hospital in Toronto. I waited two and a half weeks and never heard from the doctor. I called Sunnybrook and they said they have never received a referral for me. My doctor put it of and said "oh these things take time|". I am feeling rotten. Headaches, ringing in my left ear. Everything tastes very sweet. I am constantly tired and I have a stiff neck and shoulders ,with pain down my arms(don't know if anyone else has experienced this). I am thinking I may have to go to the US to get treatment. I don't seem to be getting anywhere or am I just impatient. Starting to get very depressed.
Carrol
-
Oh Carrol, I'm sorry about what you are going through. I honestly don't have much advice, but you will get some shortly as we have many Canadian ANers on here. They will show up soon, I know!! They will have some suggestions for you.
Sue in Vancouver, USA
-
Hi, Carrol - and welcome, although I'm sorry you had to be the recipient of an acoustic neuroma diagnosis.
Nobody wants to suffer and your doctor appears to be far too disconnected from your reality to be of much good, so I can understand your frustration. I can only hope that, should you opt to come to the U.S. for treatment of your AN, it will be successful. Meanwhile, know that we have a lot of Canadian folks that post on these forums and I'm sure they'll be along soon to welcome you and possibly to offer some advice on dealing with your country's health care bureaucracy.
Jim
-
Hi Carrol
I too, am from Ontario. I'm near Ottawa and that is whereI had my surgery done... things moved really fast when I finally deccided on surgery...As I was away for most of the months of Jan to March, the docs scheduled me for April...could have had it done earlier, but I wasnt giving up my vacations.
what part of Ontario are you from? I'm guessin near TO? I do know that referrals take time...When I wanted a second opinion, I had my GP give me a referral to Dr. Rutka...but as I ended up being content with the Ottawa dr,I cancelled it...I believe it took about 2 months to get the appt after my GP sent the referral.
Just remember that these tumors are not deadly and are very treatable. Unfortunately we have to deal with some of the side effects from it...Mine were minor. Gradual heraing loss, some tinnitus and some minor balance issues..
JO
-
Hi Jo
I live just north of Oshawa, about an hour's drive from Toronto. I have lost over 50 percent of the hearing in my left ear. I just feel so rotten all the time I just want to get on with this. My AN is 2.0 cm x 1.5 cm. The ear, nose and throat specialist that sent me for the MRI seemed to think it was very small and shouldn't be causing any headaches. He said they must be from something else. I feel like he is brushing me off all the time.
Carrol
-
Carrol
Please read this forum and do research..Alot of doctors, including ENTs have no idea what we suffer from. It really all depends on size and location..some small tumors cause major problems while some huge ones cause no problem...I llost over 50% of my hearing as well...I had no useful hearing left which is why I went with the translab method...Make one deaf but gives the best view of the tumor..
There are alot of us Canadians on here, Donnalynn, NIkki (opp2), Annne Marie, Ann, Calimama, which I'm sure they will chime in sooner or later.
dont be afraid to ask questions no matter how silly you think they are...We are all here for you...
JO
-
Hi Carol and welcome, although I am sorry you had to join this forum.
I am also from Ontario, from Kingston, so not too far from you, but was treated for my AN in Toronto.
OK, so take a big breath. This diagnosis is shocking, but this is not a life threatening condition and it is treatable. What's best is that you caught it while it is not too big yet, giving you all options for treatment, surgical or radiation (probably, although you would have to confirm this with the specialists). And you have plenty of time to do your research and decide on the best course of action.
About the referrals, given that this is a benign condition, it might take a bit longer to see the specialists than what you would like, but the most important thing is to see the right people. Sunnybrook has many specialists, Dr. Schwartz who specializes in both surgery and GK is the person to see there (another forum member, Vivian from Toronto is seeing him as well). Dr. Rutka is the ENT to see in Toronto - highly experienced in ANs, many here have him as their doctor. I would encourage you to ask for referrals for these doctors.
As for the symptoms, your ENT is proably right that headaches are not a common symptom for untreated ANs (a bit more common after surgery). But, as you will see here there is nothing "common" or "unusual" for AN patients, and every individual may experience very different symptoms. Many of the symptoms that you are describing have probably to do with a partially functioning vestibular (balance) nerve, which is being slowly destroyed and the other side is trying to compensate. This can cause fatigue, because your body is constantly trying to adapt - there is a great link to an article, which I cannot find right now (but someone may chime in, Sue perhaps?), which explains all this. Ringing and tinnitus and hearing loss are of course very common here and a prime reason for being diagnosed. Disturbances in taste probably mean that your trigeminal nerve is affected, which is not uncommon for ANs of your size.
As for tension in the shoulders, this sounds to me like more stress related - and having been diagnosed with a condition like this can cause a lot of stress and anxiety. I always feel tension in my shoulders when I am very stressed out (or when I type on the computer for long hours - same goes with pain in my right arm).
I know it is frustrating having to wait for your consultations, but take advantage of this time by doing a lot of research - this forum is a great place for this. Then once you visit the specialists you will be informed and you will go there armed with questions. One thing that I regretted is that I got an appointment fast with the neurosurgeon (because he had a cancellation), and I hadn't done any research. I can say now that I didn't get any useful information from that visit.
Don't hesitate to ask questions - that's why we're here for.
Marianna
-
Hi Carrol:
Another Canadian here - had surgery at Vancouver General Hospital over eight years ago. When I found out about my AN, it was about 1.5 cm and I chose to wait a bit but, after another MRI, it showed growth so had to be taken out. I opted for surgery...
When you do have your neurosurgeon appt, make sure you are armed with a list of questions. My main concern was that the neurosurgeon who would do the surgery had a ton of experience. I was very blunt with him and he even appreciated my forthrightness and the amount of questions I asked him. I just knew he was the right choice for me and went into surgery with confidence. It is important for your family doctor or specialist you saw to refer you to a neurosurgeon who is well known for removal of AN's.
As for your comment about perhaps heading to the US for surgery, if you are part of the Canadian Healthcare Medical system, surgery should be covered. I would hate to guess how much you would have to pay if you were to travel out of country for this surgery. Just take your time, do your research well, and soon you will have the confidence to move forward with the choices you have made. All the best!
Cecile
-
Hi Carrol,
I'm in Vancouver and found out about my surgery in mid/late Feb of 2009. I had to wait 2 months to meet my neurosurgeon and ENT surgeon. It was agonizing. I did however know that up front. It took no time at all to get the referral.....the wait was all in length of time it took to get in to see the referred doctors. Although your condition is benign and slow growing, you should still at least have a game plan given by your doctor as to whom you are going to see, and when!! No excuse for that! Go get a new doctor if req'd, because I agree that that isn't acceptable!
We have some amazing surgeons in Canada. I had my surgery at Vancouver General, with Dr. Akagami and Dr. Westerberg. Both are FANTASTIC, and my outcome was superb. I'm doing wonderful, and have gotten on with living my life in all aspects/areas.
I'm surprised to hear that your doctor thinks the headaches aren't caused by the tumor. I didn't have headaches but my doctor was surprised that I didn't! He said he would have expected me to have bad ones (although that was my GP and not my neurosurgeon). As someone before me mentioned, we all have slightly different symptoms and unfortunately there isn't a list that we can check on to see if ours are 'normal'. Abnormal seems to be the norm around here at times!
If you have any questions, feel free to message me (not on the board all the time). I can't help with specific Toronto or Ontario type questions, but I may be of help with some of the other things you are going through.
Take care.
Adrienne
-
Hi Carrol,
I just read your post. As overwhelming as this is, do not panic. I am from Thornhill Ontario. I have seen two Speciaists at Sunnybrook Dr. Nedzelski and Dr. Schwartz and I am currently on W & W and being followed by the Gammaknife Clinic at the Toronto Western. I found both specialists to be very informative and straightforward. My advice is to continue to follow up with the hospital to get an appt. You can have your referral sent to the gammaknife clinic directly if you are considering radiation. You can also request an earlier appt. if there are any cancellations. Since the doctors don't consider this urgent as it is a benign tumor there is no rush, but I can truly understand how you feel. There are many of us going through the same thing. There is nothing we can do except be treated when the time comes. As far as hearing, it becomes very annoying sometimes but you will get used to it. The ringing as well, you may not think so now but it becomes just part of the journey. If you have any other questions please let me know.
Vivian
-
Thanks everyone for your imput. It means a lot to hear from others who have gone through the same thing. I waited over two weeks and then I called Sunnybrook Hosp. They had never received a referral from my ENT. They asked for his phone number and they said they would call his office and ask him to fax it right away. I am wondering if they forgot to send it since it was a Friday afternoon whenI was there to receive the news about my AN. The ENT kept telling me it was very small, only 2.0cm x 1.5 cm. I am learning to be patient but I would just like to get this thing out. I don't really like the idea of the Gama Knife. Surgery does't sound that great either but it would get rid of it. I am finding it harder to make it through each day at work.
Thanks for the support
Carrol
-
Carole,
I wanted the darn thing out as well and only a little was taken out to save my facial nerve. So its gone from 2.0cm to 1.3cm and I am officially back to W & W. If and when it does grow, it will be radiation for me...Cyberknife is coming to Ont, one just needs to be patient for it..soon tho
JO
-
Hi Jo,
Is the Cyber Knife different than the Gama Knife. I heard that they have the Gama Knife in Toronto.
Carrol
-
Hi Carrol, I sent you an email after I found yours. PLease have a look for it.
-
Opp2,
Can't find any email that you sent. I checked my spam mail and there is nothing there either.
Carrol
-
ok, I'll resend it, sorry about that. Not sure why your message hit my spam or the other didn't go..check your mail in a bit.
(Hi all, pls share personal email address in PM's... thanks. Phyl)
-
Cyberknife and Gamma knife are similar in concept (i.e. they are both methods of stereotactic radiosurgery), but rely on a different source of radiation and differ in the way through which they are delivered (single fraction for GK vs. fractionated for CK, different equipment etc.). There are tons of posts here on their similarities and differences.
There is GK at Toronto Western Hospital in Toronto. You can get referred to the GK centre for a consultation directly (i.e. not through the neurosurgeon - your ENT should be able to do it). CK is only available at present in Quebec, but Ottawa and Hamilton are supposed to get it in the near future.
Marianna
-
Cyberknife and Gamma knife are similar in concept (i.e. they are both methods of stereotactic radiosurgery), but rely on a different source of radiation and differ in the way through which they are delivered (single fraction for GK vs. fractionated for CK, different equipment etc.). There are tons of posts here on their similarities and differences.
There is GK at Toronto Western Hospital in Toronto. You can get referred to the GK centre for a consultation directly (i.e. not through the neurosurgeon - your ENT should be able to do it). CK is only available at present in Quebec, but Ottawa and Hamilton are supposed to get it in the near future.
Marianna
Hey Marianna,
No biggie, just an update on what you have noted above (that I put in bold). CK can be done in a single fraction. MaryBKAZ had CK in a single fraction... I think at BNI.
Phyl