Waiting for surgery frustration

[mallory]

I found out about my tumor in July, and since then have had different tests and appointments with surgeons to determine what kind of surgery I'll need to have. They found out that the tumor is actually lower than they thought, and is a very awkward position affecting my swallowing and voice nerves, and is apparently very difficult to get at.

I was doing reading on here, and people mentioned that you want to find a surgeon who has done lots of these kinds of surgeries. I've had two surgeons tell me that I'd have a hard time finding a surgeon who has done more than 10 or so of these in his career. I know he's the expert in my area and I trust him to do the surgery, but I'm getting frustrated at how long it's taking to get a date. I was originally told the beginning of September, and then October, and then November. And now it's almost November and I haven't heard anything. I know that he is consulting with other surgeons to figure out the best way to get at it, but how long does that take?? It almost makes me feel like he's unsure of what to do, which makes me nervous.

In the meantime, I feel like my whole life has been put on hold. I'm not really interested in my work, because I can't exactly commit to long-term projects, and I can't commit to anything in my social life, because I have no clue if I'll even be able to do things at that point. I really want to get it over with so that I can get on with the recovery period. I guess I could really use some advice or support or anything at this point!

[Debbi]

Hi Mallory-

I don't intend to impugn your doctor, but he is off base in saying that you will be hard pressed to find someone who had done 10 AN surgeries in their entire medical career!  I'm not a doctor, but I am a well informed patient who rejected one surgical team who "only" did 20 AN surgeries a year!  Places like the House Ear Clinic in Los Angeles do several hundred AN surgeries a year; my surgical team in NY does over 50 a year; and the list goes on. 

Please consider seeking out other surgical opinions.  This is a very complicated surgery and should not be undertaken by someone who doesn't have experience - lots of experience.  Your risk of complications is, in my opinion, greater if you go with an inexperienced surgical team. 

Can you tell us where you are located?  Some of the people here may be able to point you towards more experienced surgeons.

I know that this is a very daunting and scary process, but you will be much better served by finding a medical team who you are completely comfortable with and who have experience in treating this particular type of brain tumor.  I would also be a little concerned that they have taken so long in getting back to you with a date.

I don't want to scare you, or to interfere with any decisions you have made, but I would want anyone facing this to make sure they are getting highly skilled and qualified medical treatment.

My good wishes are with you.

Debbi

[mimoore]

Hi Mallory,
My surgeon said he did appox. one a month (in Toronto). It is not quite as easy here in Canada to get more than one opinion, it is possible but a total pain. I felt good about my surgeon he specializes in skull base tumours. You will make the right descion whom ever you choose.
Oh this sounds oh too familiar, your life on hold. Waiting is hard... I just wanted to stupid thing out and carry on with my life. I kept thinking this tumour thing is cramping my style, I have got things to do and dead lines to meet. I taught kindergarten and owned and operated my own Salon. My report cards were due and I had clients booked for 8 weeks. I don't have time for BRAIN SURGERY. I found out April 10th and had surgery June 4th, 2008.
 Yep I was busy, too busy. That is the one thing I truly have learned from this experience - to slow down and enjoy life. You never know what tomorrow brings. Enjoy the people you love and live life to the fullest. I know this is a scary time for you and it may be hard for others around you to understand your anxiety but we are here for you. I found it nice to talk to folks who truly understand and don't get too sick of the millions of questions I ask.
I understand how you are feeling. Try to prepare yourself as much as possible by being as knowledgeable as you can. There  is power in knowledge, you won't feel so in the dark and will know and understand what is happening to you and how best to prepare. This site is great, someone will have experienced something in one shape or another.
Hugs Michelle  

[mallory]

Sorry I wasn't clear! I was originally told that I had an AN (when I joined this board), but have since found out that it's not an AN, and is a different kind of tumor (jugular foramen schwannoma) that has a lot of similar symptoms to an AN. But it's much less common--and doesn't have its own message board!

It was my understanding that he has done many AN surgeries, but because this type of tumor is much less common and harder to get at, he hasn't seen a lot of them in his career. Does that make sense? I am in Canada (Ottawa). I have considered seeing a surgeon in a different city (I have spoken to two here), but it seems like it would be complicated to get referrals, would involve a lot of travel time and most importantly, would just drag out the process even more. I have no reason to believe he's not qualified. He specializes in skull base tumors and was recommended to me by a number of people, including people from other cities. Is it a mistake to not talk to other people, just because I'm tired of waiting?

Thank you both for your support. It definitely is nice to have people who understand the anxiety.

[Kaybo]

Mallory~ 
Thank you for clarifying what you have exactly.  From what I have heard, House in LA is the best in the field for AN's and do free phone consultations.  I think I would at least give it a try with them - if it is closely related to an AN, I would think that they would be your best bet at pointing you to the most skilled person to deal with it!
Good Luck!

K

[MAlegant]

I would also highly recommend the folks at University Hospitals in Cleveland; their team is quite good (but I'm biased  ).  I know that the tumor may be rare, but I would bet the Barrow Institute (also in the US but I'm not sure where), would be a good place to start.  I'm sorry that you're frustrated--I would be too--hopefully you'll set on a course soon.
Best,
M

[Cheryl R]

University of Iowa Hospital and Clinics is also  very reputable.           Over 60 ANs are done a year and a silimilar number of cochlear implants.                 Being NF2,my first surgery was Nov 1,2001 so soon to be seven years.                    They are rated 2nd in the US News and World report rating of the Otolarynology dept which the skull base surgery is part of.              I know there are many out of state surgical patients.   
                                                         Cheryl R

[kenneth_k]

Hi Mallory.

I can truly relate to your feelings about having your life on hold. I felt exactly the same before surgery. I tried to find activities, i.e. watching a funny movie with the kids, that could take my mind of the tumor. And then when they sky looked grey, I would think back to my good experiences to remember myself, that everything wasn't all that bad all the time. Some times it worked, other times it didn't.

I wish you the best of luck and hope you find an experienced surgeon.

Kenneth

[satman]

seems as if the united states is where you want to be,the issue would be,does the us accept insurance from canada ?
if your comfortable with your dr. in canada i really dont see a problem.
being that he's consulting other dr's and not rushing to get this thing done says quite a bit i would think,which seems to me that he has your best intrest at heart. tough decision but try not to get too frustrated as you have enough going on as it is.
i can reccommend someone in dallas which unfortunatley does'nt help at all.
personally i think i would hang with the one you've got,from what i've read he's not that familiar with this kind of tumor because they are extremley rare yet he's done many an surgeries. being that they are rare it kind of makes sense that he has'nt came across many of these.
makes sense to me. if he gave me that info and rushed into it then i would be worried,but thats just me.

[wendysig]

Mallory,
I'm pretty sure Ceeceek on the Cyberknife forum had the same type of  tumor as you and  might be able to give you some first hand advice.  You can contact her at forum@cyberknife.com and send her a private message.  She is great and I'm sure wouldn't mind helping.  If you contact her say "Hi" for me.

Best wishes,
Wendy