Radiologist reports driving me crazy!

[mk]

Nikki I know that in your search for treatment you researched all the doctors extensively. Something more difficult to do in my case, because of the lack of proximity to the GTA. But I am lucky that I have access to all this collective knowledge and research that you (and Ann-Keeping up and Trish, and everyone else) have done.

As for a doctor that is not very experienced on ANs ... I think I will pass. I already have a consult scheduled, but I don't hold my breath.

Marianna

[mk]

So here is the update.

After all this going back and forth and me insisting, the radiation oncologist sent the scans to a 3rd radiologist who also thinks that there has been some growth (2-3mm) after GK. Ditto for Dr. R. - we looked at the scans together, he was very thorough and caring, so I am very convinced of his assessment.

So maybe I should move this thread into "microsurgical options', but I have decided that I want this thing out - now (meaning the next few months) is the time to do it when I am also in good shape professionally and I can easily get sick leave and help (my mother in law has retired and has offered to help). I actually feel much better now after deciding that this is what's needed.

I am still seeing Dr. T., but also have asked for more referrals. I was told Dr. Cusimano is very good. The radiation oncologist at the GK centre said that he will arrange for a consult with him (together with Dr. Schwartz).  Has anyone heard about Dr. Cusimano?

Happy Thanksgiving weekend for our friends south of the border.

Marianna

[Keeping Up]

Hey Marianna

Best wishes going your way as you walk down this next step of your AN journey.  I am very sorry this was the end result but at least you are getting several referrals.  Is the BC doctor an option (Nicki's and Adrienne's surgeon?) - no clue how out of province care works.  We don't seem to have many participants on this site with surgery in Toronto - Trish's doctor is unfortunately ill again and Dr. T is stepping in.  (I was originally referred to Tymianski as Guha was on medical leave.)

Thinking of you.

Ann

[Tumbleweed]

Oh, Marianna, I am so sorry this is going the way it is for you. It makes sense, though, that you should turn to surgery at this point. Props to you for being so proactive in your health care and insisting on getting more opinions.

I will be thinking of you every step of the way along your journey.

Best wishes,
TW

[Jim Scott]

Marianna ~

Having come to recognize you as a very focused, conscientious poster on these forums I have every confidence that you've made a sound, if difficult, decision.  I wish you complete success with the surgery and a swift, uncomplicated recovery.

Jim

[mk]

Thank you for all your support. It means a lot to me. As difficult as this is, it is great to know so many people who care and to have access to so much collective expertise - this forum has been invaluable throughout this journey.

Ann, yes, it seems strange to me that there are no more people with more recent surgery in Toronto. I have also inquired at the ANAC forum, but didn't receive any responses. I know of a couple of other recent cases (outside the forum) who weren't impressed with the options they were given in Toronto and have gone elsewhere. I am curious to see Dr. Cusimano, I have read many good things about him. As for Dr. Akagami (the Vancouver doctor), he is my big hope right now. I have already contacted him and he responded promptly, asking me to send my scans, which I did. So I am eagerly waiting for his response. There is a reciprocal agreement between Ontario and BC, meaning that care in BC is covered by OHIP.

I will keep posting updates whenever I have them.

Marianna

[yardtick]

Hi Marianna,

I do not know how I missed this.  I did see Dr Cusimano at St Michael's Hospital a little over 3 years ago.  I believe he is a neurosurgeon who specialises in radiation treatment.  I wasn't a candidate for radiation because of the location of my facial neuroma.  He is well spoken and at times I had to ask him to simplify the language a bit and he did.

Good luck,
Anne Marie

[opp2]

Hey Girl,

I missed it too...so sorry...I do come in every day, but sometimes I just skim...too much painting you know. Let me know how it goes. If there is anything I can do...

I do know a guy who I met through the ANAC web site and he had surgery with Dr. Nedzelski on Oct 26th. He called me here at home a few days after the surgery. I was so excited to talk to him. He did really well too.

Nikki

[Lizard]

Sorry I'm posting late on this one, my lap top has been in the fritz the last couple weeks.  I just wanted to acknowledge the huge decision you made, and as a veteran AN'er I'm sure you feel relieved and have a sense of calm with your decision to have surgery.  Please let us know when you are scheduled!  Don't forget the lip balm (chapstick is very important!)
Take care,
Liz

[mk]

It does seem that after all I will be joining the select club of the few who are both radiation and surgery veterans. I don't think anything will happen though at least for a few months with the slow pace of consultations. Dr. Akagami's secretary phone today to tell me that he is willing to see me and they will be scheduling a consult.  I am very excited about this.

And yes, I have read about the chapstick and I know that it is the most important thing to bring.

Thank you all.
Marianna

[Jim Scott]

Marianna ~

On a lighter note: perhaps I'm an anomaly but I didn't need Chapstick during my post-op stay in the hospital (5 days, 4 in ICU).  Still, it can't hurt to pack it...just in case you have a severe case of chapped lips. 

Jim