New AN in Toronto - gneral advice and local options?

[calimama]

Hi,
I am newly diagnosed with a 2.2x2.9 AN (left). My only real symptoms at this point are reduced hearing (but still useful) and tinnitus in AN ear.

It is great to get info from all over the world (thank you all for shaing this invaluable information).

I have some general questions to all and some that are directed to Ontario ANers with Toronto information/experience.

1. I am wondering if anyone has had GK at the Toronto Western Hospital. The machine is new (since 2005) so i am not sure how much this treatment has been performed here - so how experienced are the operators? We are lucky to have this... I am 80/20 for this over surgery. I understand that choice of surgeon and skill is CRITICAL to a good outcome from surgery... How relevant is this for GK?

2. Has anyone in Ontario with access to GK still gone to the US (out of pocket!) for treatment at one of the established centers? How much did this cost?

3. Has anyone had AN surgery in Toronto, who was your doctor/s, and how did it go?


I am 39 years old and have a one year old beautiful baby girl. I hope for another ASAP, but need to get past the AN first. I am hoping GK will help me to move on sooner (one of the many reasons i am leaning in this direction).
4. Are there any issues with pregnancy soon after GK, other than exhaustion.

To those to take the time to post your insights (as of a few days ago i was only a reader)... bless you.

Thanks.

[ppearl214]

Hi calimama and welcome. Good to have you here and hoping you are gaining info and answers here that you seek.

I know we have many here from Canada that log on and participate. One that comes to mind in the Ontario area is yardtick and she may be able to help as I thought she saw a dr in Toronto.... maybe worth sending a PM (private message)... or....

"Hey yardtick.... can you please advise?"

Again, welcome!
Phyl

[Kaybo]

Calimama~
I am not from Canada, but I really like it there!!  Welcome -- sorry for having to meet this way!  I got pregnant about a year after surgery (not GK) -- I realize now that was too soon, but I didn't know any different so I just did what I had to.  I think the GK is probably a LOT easier on your body then the surgery I had!!  It can be done!  I definitely understand the desire to increase you family...AN or not!!  Send me a PM if you'd like to chat!!  I have 3 daughters -- check out our blog if you want: threecurlygirlies.blogspot.com
Good Luck!
K

[yardtick]

Calimama,

I'm seeing a Dr Rutka @ Toronto General.  I was seeing someone in Hamilton and I couldn't get answers.  Dr Rutka will take his time with you and he will answer all of your questions.  I know Princess Margaret Hospital is across the street form the Toronto General and a beloved former member of this form received her FSR treatment at the Princess Margaret. 

If you want Dr Rutka's phone # PM me.  Take care of yourself and of your little pumpkin.

Anne Marie

[Denisex2boys]

Hi there - I too am in Ontario - - 2 boys aged 8 and 4 - I am going the surgery route - I want it GONE .... I am seeing Dr. Parnes and Lownie at London Health Sciences Center - and so far ... have nothing but great things to say about both of them .... Surgery will more than likely be in May/June of this year.....

PM me if you want - or I also am on MSN (if you prefer 'real-time' chat)

I know this must all seem overwhelming right now ((((HUGS))))

[sgerrard]

I can't help with doctors in Ontario, but I would like to respond to a couple of your questions on radiation treatment.

The experience level of a radiation team is considered less important than it is for surgery, at least during the treatment itself. However, as I was asked at a local ANA meeting, then why did I go out of state for radiation treatment? The answer emerged that finding a treatment team that was responsive was important - someone you could call afterwards if something developed. That is when the doctors' experience with ANs becomes important for radiation patients.

I don't know of any specific issues with starting a pregnancy after radiation treatment. One issue might be that if there is some swelling, you might need to take a steroid for a few weeks, which could have some negative effect. That doesn't happen all that often, though - I haven't needed them. My experience with CK radiation was that it was not exhausting at all, in fact I felt more energetic afterwards, mostly from the stress relief I think.

Best wishes,

Steve

[Lorenzo]

HI Calimama,

Yardtick mentioned a doc that the former forum member (Windsong) went to at Princess Margaret: his name is Laperriere. He did FSR on her using a LINAC, 25 session. She had nothing but good things to say about him too, and Dr Rutka was one of her preferred docs! If you are wondering why we call her 'former', it's because she died in September of a NON AN RELATED PROBLEM, a stroke. She had other health issues. Just felt I needed to clarify that.

One thing I would add, is that it is vital that you consult with a radiosurgeon on matters relating to radiosurgery, as neurosurgeons may  not necessarily give you up to date or accurate advice. Consult a specialist in each field.

My An touched and slightly dented my brain stem, still does. After CK it swell by about 10-15%, from 26mm to 30mm roughly. I didn't have to take steroids, and it shrank back within a matter of months. While it was larger my symptoms increased, louder tinnitus, less concentration, slight balance problems, short / micro episodes of pain behind my ear. Nothing I couldn't deal with. Hearing decreased to, by 5%. All those effects have returned to normal pre-CK levels, except for my hearing. I agree with Steve (as always!  ) that experience of the team is not as vital with radiosurgery than it is with microsurgery. However, it is important, in fact THE most important aspect of it all, that you choose a treatment option and a team that you are very comfortable with. They are going to be your team for the next foreseeable future. So take your time in making a decision.

Ciao, Lorenzo

[calimama]

Hi all,
I am here... i tried to respond earlier (to the nice posts from Phyl and Kaybo) but i was not able to get back in Not sure what the problem was but.... - Back i am (go yoda!).
I am actually seeing Rutka already. Glad to hear good things...
I greatly appreciate the advice and support. I have read a lot already on this site and it is very comforting to see the selfless support and concern. Like many say, it is easy for things to go well and walk away and forget. So those that are left here, giving more than they get (us newbies doing all the getting) should know how much good they do.
I will meet with specialists on both sides for sure, but think that the GK will be my preferred option. Funny, i don't feel any annomosity towards my AN. I don't have this "get it out" feeling. If it would just stop growing, that would be fine by me. I am lucky to have a wonderful life, husband and baby girl. I just want to feel good and have another baby. Surgery seems a road for soldiers... i think maybe i am just not cut out for that battle.
I am amazed by the strength of those posting here. I was reading earlier posts about Chuck and his awesome sister trying to find help for him. The world is not such a bad place.
I love the Canadian-American connection. I had trouble finding this kind of connection in Canada... i guess it is a smaller place and so the pool is smaller. We are quiet, conservative. But I see that other Cdns have found their way here too. It's all good.
Anyway, i will continue to see what everybody thinks about everything... dig and dig and dig for more info.
Thanks for the scoop on Lapierre (sp?)... this is helpful.
And Kaybo thanks for the links to your website. Your little girls are just magical.

Calimama

[Kaybo]

Calimama~
Thanks for your sweet words -- we have been blessed beyond measure!!   
K

[calimama]

thank all.
Lorenzo i am curious about your experience. Was your AN in the IAC? Is that normal... that your hearing worsened (with swelling) but never improved (while other complications did)? It seems you are 3 years out now... what are your permanent issues? Do you have any hearing left?

From what i understand, my orginates in the "cistern". It has "moderate mass effect" on the pons (which i think is the stem). A bit has just started to move into the IAC. Apparently because of the IAC situation, there is some chance of hearing preservation with one of the surgery options. I am really not that keen on surgery anyway, but the idea (hope?) of preserving some hearing is desirable (but i know there are more critical things to consider - facial nerve). Apparently my hearing loss is currently about 20-30%. I do have tinnitus, which i guess i am used to now. I don't know if GK gives me some hope for hearing preservation (not sure if 30% hearing + tinnitus is much good for anything?!). To me the big advantage with GK is HOPEFULLY a faster recovery and less complicaitons (although i know there are increased risks down the road). I would like to have another baby and the clock is ticking so "front-loading" is not ideal.

Thanks to one and all.

[Kaybo]

Dumb blonde here -- what is "front-loading"?
K

[Lorenzo]

Calimama,

to answer your questions:

Yes, my An originated in the IAC. At the time of treatment my hearing was 70% down and of not much use anyway. Hearing preservation was not a factor in my decision; I just wasn't comfortable with surgery. Swelling worsened all symptoms as it stretched the nerves further, and gave some new effects, like the short sharp pains behind the ear. Fortunately those did not last for a long time. While the tinnitus went back to its original level, the hearing nerve did not recover from the swelling. I think that's normal. I lost an extra 5% apparently. But, as I had no useable hearing form the start the extra loss made little difference to me.

Just a quick point about hearing preservation: FSR offers a higher chance of hearing preservation, but does not guarantee that you will preserve your hearing. This said, personally I think with the kind of hearing loss you have small hearing loss following swelling (if swelling there is) may not have that much of an impact. I'm not sure if others here that had CK also had further hearing loss.

Permanent issue now: from a purely AN point of view, none really. No pains. Balance is the same as before treatment, tinnitus is back to it's old self, hearing is useless just as much as before CK, headaches when weather / air pressure changes which I also had way before diagnosis, fatigue levels have decreased dramatically and I'm now back to a better energy level, better than for a very long time.3 years out, I can honestly say I haven't felt this positive and well for a very very long time.


The pons is the brainstem. 30% plus tinniitus could be of some use, and it might mean if you need to, you could get one of the normal hearing aids. Recovery from FSR seems in general to be easier. It really depends on individuals. For me, the first 8 months were the worst. I could work, but had to reduce the amount of work I did. But improvement in energy levels and cognitive abilities were at times gradual, at time sudden. Eventually things returned to normal. I'm glad I decided to go the Ck route and that I could chose that option. I'm not sure about possible risks down the road, or what they might be? If you mean the risks of a malignant tumour, the risks of that are at the same levels as having a tumour from any other cause, as far as I know. Unless some recent study shows that this has changed.

All the best,

Lorenzo

[calimama]

By "front-loading" i mean taking the big hit up front, with hopes that you get the worst behind at the start (surgery route), compared to radiation where you might (likely) have an easier time at the beginning but complications and unknowns can come down the road. I didn't make this up. I have read it in a few instances, particularly in relation to electing surgery. I have also been told that you can "pay now" (surgery) or "pay later" (radiation). I am sure that this is a HUGE simplification and in the end everyone's experience is different.

I THINK that the US "cyberknife" might be the same technology as the LINAC (accelerator) that is an option for us in Ontario, Canada. I have heard (again... there are always different takes ) that GK is superior for AN (particularly if more symetrical) as it is more precise. Not sure if this is entirely true, but that's what i have heard.

Is exhaustion after radiation pretty standard?? Any typical time frame?

Geez it is kind of scary to see how many people are really affected in their ability to go back to work (in the same capacity). I am a professional and have worked all my life. I can't imagine not being able to function in the same capacity (very analytical). Not working is not an option for us financially either. At least in Cda we dont have to worry about losing healthy care if we are out of work. I did read a sad post along these lines. Our system is not perfect, but it certainly is nothing to complain about!

Thanks to one and all.

[Mark]

I THINK that the US "cyberknife" might be the same technology as the LINAC (accelerator) that is an option for us in Ontario, Canada. I have heard (again... there are always different takes ) that GK is superior for AN (particularly if more symetrical) as it is more precise. Not sure if this is entirely true, but that's what i have heard.

Is exhaustion after radiation pretty standard?? Any typical time frame?

Calimama,

Not really,
LINAC merely refers to a source for the radiation, all machines that use X-rays use a linear accelerator with the exception of GK which uses cobalt. Biologically, there is no difference, but cobalt is considered "dirtier" from a disposal standpoint. GK and CK are considered radiosurgery machines while others which typically do extended FSR protocols are classified as radiotherapy machines. GK is almost always delivered in one dose and requires a halo device to be attached to the head to insure accuracy. CK can be delivered in one dose or fractions which typically has a higher hearing preservation result. CK is slightly more accurate than GK, but not so much much that it effects outcomes. In terms of the ability to treat man irregular shaped AN evenly, GK has 204 beam capability and CK has a revolving delivery platform, both are good, but CK has been shown to address the issue better than GK .  Both machines can be equally good choices for an AN, but CK would be considered newer technology and allows for the choices of not using the halo or having fractions.

I think exhaustion after radiation is a pretty individual experience and I don't know that I would call it a standard outcome. Clearly some folks have it, but I didn't have any symptoms like that after my treatment. It would probably be an interesting study to compare the profiles of those who get it and those who don't for any common traits such as age, general health, amount of exercise / physical activity etc.


Mark

[sgerrard]

Hi Calimama,

I would agree that CK and GK are better than the many-days style of FSR, by some amount anyway. Between CK and GK, it's pretty much a coin toss, with a little nod to CK because of slightly better hearing preservation and a smoother experience for the patient.

I experienced no exhaustion or inability to work after CK, and I work as a computer programmer. In fact my work has improved from last year, when I was feeling much foggier-headed. Three months after CK I experienced some troubling ear pressure, which has since gone away again; that's about it for after effects. My next MRI is Wednesday, and I don't expect it to show anything alarming. The hearing test may be more interesting...

I liked your earlier comment about "not having animosity to your AN." It is, after all, just a blob of your own nerve sheath tissue, with something a little out of whack. It is not alien material. If you zap it so it stops growing, its kind of like having a callous on your finger, and not so different from scar tissue after surgery.

Steve