My big consultation adventure

[mk]

I haven't posted any updates on my consults yet, because I was hoping that by now I would have something positive to report. But it seems that since November when I saw the neurotologist and he recommended that I should be looking at surgery, nothing much is happening.  After seeing the neurotologist I decided to start trying to get appointments for consultation - I say "trying" because this may sound easier than it really is. On January 5th I saw the first neurosurgeon. He told me that "the good news is that he is not going to kill me". He gave me a 100% chance for facial paralysis (has anyone else here been given 100% chance?). And when I asked how long before I can go back to work he told me that it depends on "how I will feel teaching when I look like Jean Chretien" (for the non-Canadians, he was a long serving prime minister of Canada who had some sort of facial paralysis). I know that there are very high chances of paralysis, and that after all it is not the end of the world and people can still function and work. But this guy seemed to say that there is no point of even trying. Obviously I didn't leave with a warm and fuzzy feeling.
The following week I had an appointment with another highly recommended surgeon. So once again I hop into the train for the 3 hour ride, only to find out that the doctor wasn't there because he had to go to a funeral - well, I understand, but maybe they could have notified me  They rescheduled that appointment for the end of February ...
And then, I had another appointment on Wednesday this week at Sunnybrook. Well, guess what - the big storm. All schools were closed, kids were home, so I had to stay with them, plus travelling wasn't such a good idea. Reschedule again for last week of February...
Needless to say I am quite frustrated with all this wait (vent). It seems that I am not going anywhere- At least I have three appointments with highly recommended doctors lined up for the last week of February and first week of March (in Toronto). Hopefully this will be the end of the consultation saga.

Marianna

[sgerrard]

Marianna,

I didn't even realize you were looking into getting surgery. It must be growing again?

I think some old school surgeons don't even try to save the facial nerve. If that one says 100% chance, I'm sure he can keep that promise. I would not go to such a surgeon; there are plenty who are willing to try and save the facial nerve, and who have good success at it. Not every time, but way less than 100%. Including post-radiation patients, for that matter.

I hope it is not too frustrating waiting around, and that you enjoy the snow while you have it, and get a good consultation at the end of the month.

Steve

[ppearl214]

Marianna

With Steve... is it growing? Are they showing confirmed growth (ie: outside the +/-2mm)?  Are you having enhanced symptoms?

HUGGLEZ!!!!!!!!!!!!!!!!!!!!!    

Phyl

[mk]

Sorry, I should have updated, I posted in another thread back in November-December.
http://www.anausa.org/smf/index.php?topic=13768.0

Well, the interval change has never been above the margin of error, always within 1 mm. The radiation oncologist kept saying that it is stable. But the overall trend has been one of slight growth since GK. From 2.8 it now sits at about 3.1 cm and the radiologist made a note of the overall growth in the last report. In my mind if it is just error, the measurements should go both upwards and downwards. I know, it is not that much, but given the size and compression that it is causing, I am afraid that there is no more room for growth. All the doctors I have seen up to now agree that is probably won't stop growing.

And no, I don't have any symptoms. But then, I never did. This thing has been growing so slowly that obviously the brain has time to adjust.

So now I am down the path of surgical options - which I have pretty much accepted. At least now the timing is much better than when I was first diagnosed - kids are older, things at work are much more stable, my mother in law has retired and can come for a few months to help. GK did buy me some time.

Marianna

[CHD63]

Marianna .....

I am more than a little upset by your post ...... but mostly that any doctor would paint such an awful picture of a potential outcome.  What has happened to "giving patients hope" here!!!

I have not done much research on surgical removal of ANs following GK, but I did attend a session at the symposium two years ago, in which the presenters showed a video of an actual surgery.  At the end of the presentation someone asked if having had radiation surgery first, "does it make it more difficult to remove an AN?"  The answer was a very qualified, "sometimes, yes."  But he quickly went on to say that it generally was just more time-consuming to work around the scar tissue.  But this would be true for removal of a regrowth, as well.

I'm with Steve.  I would never go back to someone who flat out would not even try for facial nerve preservation.

So sorry you are having such a time with appointments.  Many thoughts and prayers.

Clarice

[Jim Scott]

Marianna ~

I can empathize with your frustration regarding doctor consultations.  My wife has had to re-schedule 2 important doctor consults in the past few weeks.  The first time because she had the flu.  The second due to a snow storm that precluded the 60-mile round trip drive.  Of course the doctor promising you a "100% chance of facial paralysis" is not only tactless but very likely behind the times in neurosurgery techniques for saving facial nerve function during AN removal surgery.  If he thinks cracking lame 'jokes' about a patient (you) having post-op facial paralysis than he is clearly an unacceptable choice as your surgeon.  I assume this was obvious but still, his audacity is deplorable.  My neurosurgeon, a man in his 60's, was very focused on saving my facial nerve function and although his procedure was more involved and included both surgery and radiation (FSR), his concern was very reassuring and the results were excellent.  This is the kind of doctor I wish every AN patient could have.   Although its fortunate you don't have any symptoms your feeling of inertia is understandable.  I trust that, as you noted, your upcoming medical consults will end your 'consultation saga' - in a positive way.  Please keep us informed.  Thanks.

Jim

[mk]

Thank you all for your understanding.

Yes, Jim, I agree that some of this (especially the "at least I won't kill you" statement) was intended as a "joke", but I wasn't amused at all. Like you stated, these are not jokes you tell a patient in this situation, and certainly not a lady. It was obvious that he didn't believe in a good outcome.

I don't think that he is an "old school" surgeon, he is quite young. I think that one problem might be lack of surgical experience in post-radiated tumors.
Clarice, the doctor's reasoning  behind the 100% paralysis statement is that a facial radiated nerve has "thinned" out, so it is very difficult to avoid paralysis, given also the size. And he didn't seem willing to leave a tiny portion (contrary to what the neurotologist who works with him had said), because there is no option for radiation afterwards.
Of course we have heard about surgery being more difficult post radiation - I did read an article from the House sometime ago (I wish I could find it again), that had some evidence of this, but finally it concluded that the difference was not statistically significant.
Oh, and he also mentioned something about trying a combination of translab and retrosigmoid, has anyone heard of this before?

The good news is that I have three very well known and respected neurosurgeons lined up for the upcoming consultations - I tried very hard to get these referrals, and I think they are the best I can find in Canada. So I don't want to dwell on this negative experience too much, hoping that the next consultations will be more productive.

Jim, I hope your wife will manage to get her consultations soon.

Thank you for listening,
Marianna

[leapyrtwins]

Marianna -

add me to the list of those who didn't know you had regrowth.

I'm sorry to hear this.

Jan

[Keeping Up]

Hey Marianna

I did remember you had the recommendation to look to surgery now - sorry about both that conclusion as well as the disaster of the referrals. 

I can guess who you first saw (Dr. T???)  - I actually think he is probably a very talented surgeon (his expertise is very delicate deep brain surgery where a mishap will cause someone to die!) but lacks in bedside manner.  The thinning of the facial nerve - is that due to the size of tumor, a result of the GK or a bit both?  I hadn't ever put together (why would I with a small tumor like mine!) the impact to the facial nerve post-GK, always thought radiation caused the tumor to change which made surgery more difficult.  Being out of the big centres is also a huge pain, you have to come a long way for your appointments.  (I would complain when the subway was a few minutes late because I only left 10-15 minutes to get to my appointments from work.) 

The 100% facial paralysis - truly not a compassionate response.  While I am a huge proponent of the quality of care available in Canada (as you know), does a non-Canadian consult make any sense - even to ballpark their guesstimate of post-surgery facial issues.  The 100% estimate may be the realistic response but it seems a bit too harsh based on the experience of people on this site.

Keep us posted - end of February really isn't too far away ... unless you are the one waiting for the appointment.

Ann

[mk]

Thank you Jan.

Hey Ann, I read in one of your other posts that you are in Calgary now? Wow, that was a big move.  Have you looked yet for a good medical team for your followups out there?

Yes, you guessed right. And I agree that Dr. T. is very well known in brain aneurysms, and all sorts of other very complicated things. I don't know about his experience with ANs in particular. And I am not the overly sensitive type, I can stomach pretty much anything. But it just bothered me that he didn't seem to have any sort of confidence in a good outcome.
About the facial nerve from what I have read on the forum when it is wrapped around a big AN it thins out (which is reasonable). Having been radiated as well, I guess it becomes more sensitive or it is already sort of damaged? Or the tumor becomes more sticky to the nerve?
For sure, I am expecting to get some more answers and clarifications from the rest of my consults. I know these are all very well respected doctors that I will be seeing, with Dr. A. being one of the top in North America. But I have certainly considered what you are saying about asking elsewhere for opinions, and I will do so for sure if I don't get any satisfactory answers. Obviously House and SBI are first on my list.

Marianna

[mysticfem]

     Hi Marianna,
         I got a message in my personal email that you wanted to hear from me. I've had no time to get onto the forum, although I feel that it's a duty to recount my experience, considering what others have been through. They need to know that there's a better alternative to translab. with much fewer morbidities.
          I am indeed doing well and am back at school teaching - that's why no time! I go to bed early to make sure that I get about 9 hours of sleep, as I still have some annoying minor symptoms that tire me.
          The surgery in LA went very well and I have full facial movement even though my tumour was very large and I've been previously irradiated. (That failed - apparently it always does in the end!) This caused a post-op complication - CSF fluid dripping from my nose for a month and I developed an infection (in Canada) because of it, which then was treated with very powerful antibiotics. I developed a violent allergic reaction to those and had to be cut off them quickly. Then, I needed a month to recover from that. I felt strong and energetic as soon as I was released from the antibiotics. This is my 4th week back at school and I still feel great!   
         I'm amazed that someone told you that you had a 100% chance of facial paralysis. That should not happen in 2011!  I was told that I had a 30% chance - and I had trouble coping with that!!
      You're right to consult everywhere with as many surgeons as you can. Ask if anyone is willing to do a minimally invasive procedure here. However, they'd have to learn how to do it first. My LA surgeon is willing to come here to demonstrate alongside any MD willing to learn. (I just spoke to him today, in fact.)
   Why don't you write me on my personal email if you wish, as I look at it every day. Wishing you well with all this, Sylvie

[mk]

Hi Sylvie,

I am so glad to hear that you are doing so well, already able to work full time and with no major issues. This is all great news. I think that it is important to share your experience, I am sure that many people would appreciate it.
About the CSF leak, I was told too that there is an increased risk for this when operating on a radiated tumor, because of the scar tissue.
I don't have your e-mail address, could you send it to me by PM? I will send you a PM with my address.

Take care,
Marianna

[Chances3]

Hi Marianna,

I'm a new contributor to this site although my surgeon recommended it to me last year.  I hope I can give you some good info, or perhaps some of the more knowledgeable contributors could.  I was told that the procedure I had gave me the best chances of facial and hearing preservation.  It's called the Middle Fossa approach where the doctors enter your head above the ear.  My tumor was small, but my face is doing just fine even though it has some problems 10 days after post op.  I was put on steroids and antibiotics.  I have significant reduction in hearing on my affected side, but as I mentioned my face is working fine.  The doctors told me this procedure is not without risks, but I was willing to work with it.  If you can, I would seek out a good surgeon who has significant experience in removals of AN.  i would learn as much as you can about the three different approaches surgeons take to remove AN.  Try this site, www.earsite.com/tumors/common_qs_acoustic_neuromas.html

[mk]

Here is an update on what's going on. I had the rest of my consults in Toronto and I got some more doom and gloom stories that I don't care to recount (and not only for the facial stuff). They made me wonder if everyone's consults are like this and if yes, how can anyone ever opt for surgery unless it is absolutely necessary.
Today I had my long awaited consult in Vancouver. My flight was yesterday on a stormy day - big winds on both sides. I was so stressed out about a possible flight cancellation, but eventually everything went well.
Today's consult was unlike anything I had. Dr. A. spent more than an hour explaining his procedures. He had carefully laid out and studied all my previous MRIs since GK, and explained everything (nerve locations etc) to me patiently and in detail. He uses the retrosigmoid approach for larger tumors, but does not do brain retraction. He also has a few other techniques that he uses (like muscle stimulation during the surgery) that I haven't heard before. He told me that there is a high chance of mild weakness, but the chances for full paralysis are small. He was surprised when I quoted the 100% chance that I heard. Right away I felt very comfortable with him. And the best part is that he is willing to put me in his priority list, meaning that he would schedule me within the next two months. I was so relieved when I heard this that I almost burst into tears right there in his office - these have been three very long and stressful months.

So today I am a happy camper.

Oh, I also wanted to mention that all the neurosurgeons that I have seen (except from the first one) mentioned that they haven't seen an increase in the difficulty in radiated tumors. On the contrary some where less sticky and less vascular, so actually easier to remove.
Marianna

[windy]

Marianna, you know I am so happy for you.  It is about time you had a decent neurosurgeon's visit!!!  Also, I like that you are posting your "consultation adventure"!!

Windy