Newly diagnosed...Canadian feeling scared....

[Susang8]

Hi Patrick...

I wanted to thank you for your earlier message to me. Min tried to message you privately but to connect but am guessing you didn't receive it?

At any rate, thanks for your support...it is helpful to connect with fellow Canadians who have knowledge and experience with Canadian doctors.

Susan

[Echo]

Susan,

Dr. John Rutka is not a Neurosurgeon.  He is an Otolaryngologist (ENT Surgeon) who would perform the Translabyrinthine surgical approach assisted by a Neurosurgeon.  A Neurosurgeon would perform the Retrosigmoid approach without requiring the assistance of an Otolaryngologist.

Regarding the Toronto Gamma Knife Center, yes, they do like to use a team approach.  I prefer to keep things consistent seeing my specific Neurosurgeon.  For people like me, post Gamma, I specify when making follow up appointments that I wish to see my neurosurgeon exclusively - that way I do not get bumped around.

Cathie

[Ninabea]

Thanks for the support. After consulting with the Gamma Knife Team at Toronto Wesrtern, as well as Dr Sumit Agrawal at university Hospital in London (dr. Parnes' partner) we agreed that Gamma Knife was a good option. There was some doubt about whether the AN was impinging on my facial nerve, and the consequences of that complicating the surgery really ended the conversation about surgery. My AN is quite small (1 cm), and restricted to the bone passage between the ear and brain. So GK seemed an obvious choice. I had the procedure done last week. After an initial headache (diminished over several days) and tiredness, I felt pretty fit. If I had to guess, though, I think there have been some detrimental effects to my balance (I weave a bit when I walk, bump into things, am tippy) and hearing -- I guess that's going to go regardless -- as well as worse tinnitus. I guess I won't know for sure if the GK worked until 6 month follow up MRI.

[Echo]

Hi Ninabea,

I also had Gamma at Toronto Western, 11 months ago.  I did not have any post treatment headaches or increase in tinnitus, but my balance and wobble issues did get quite worse for roughly the first 6 months post treatment.  My AN was larger than yours at 2.4cm, so I am assuming the balance issues were tied to swelling. 

Six months will be far to soon for you to know much about what the Gamma has done.  AN's die off slowly and frequently swell first before dying.  It can take anywhere from 18 - 24 months before you will really know where you are at.  I was told by my neurosurgeon that symptoms can come and go throughout that time period, and so far he has been right.  My first MRI at 6 months showed the AN had changed in shape and was ever so slightly smaller but there was no sign of necrosis.  I am looking forward to seeing what my 1 year MRI will look like when it's done next month. 

Make sure you get lots of rest.  If your balance is not great then your brain will work extra hard to try and help you out, and in my case it sure made me more tired than usual.  Hopefully your hearing will not go to quickly - that should be one of the many positive features of Gamma, but everyone reacts differently.

Wishing you a smooth recovery!
Cathie