ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Tod on January 11, 2010, 07:30:25 pm
-
Okay, you know the day is going to be interesting when a neurologist calls you at 7am his time and says, "Sir, you have a problem."
Dr. Luxford confirmed everything I had learned here and elsewhere. Suggested at the outside this needs to be dealt with in no more than 3-6 months, preferably before. Explained that retro-sigmoid and trans lab were the only options given its size and that translab was the best.
Dr. Schwartz called this evening and revisited most of this. Also explained that y nerves for left side vocal cords and swallowing were also at risk. Restated the time element and mentioned that only a handful of tumors this size are found each year.
Meet with the local nerotologist still on Thursday at the Medical College of Virginia. And then we'll see where this goes.
-Tod
-
Deep breaths Tod (oops). You're moving as quickly as you can making decisions you've never had to even consider before now. We've all been, and some of us are still in that position of determining the best possible treatment. We know how badly it stinks, how confusing, how frightening it can be.
Hang in there Kid.
-
Hey Tod.
You should feel good about the decision you finally make since you've done your homework. I'm impressed by how much you know already! Hope all goes well at MCV on Thursday.
Cyndi
-
Hey Tod,
I was in a similar boat as you a couple years ago, mine was a Neuroma of the 10th cranial nerve (the one that controls the vocal chords).. it was big as well (see my sig below). My story is pretty long and I won't go in to the gory details but I wanted to say that if I can get thru it, so can you! The dysphagia was difficult to deal with but the vocal chord paralysis really has not had a very dramatic effect on my life. If you would like to talk, ask questions, or anything please don't hesitate to contact me, I'll be glad to tell you anything you want to know. Just know I was pretty much a worst case scenario and now my life is as normal as it was before the surgery.
Wishing you the best,
Kevin
-
Restated the time element and mentioned that only a handful of tumors this size are found each year.
Tod -
I'm sure you've told us before, but I can't remember and it's not on your profile, how large is your tumor?
Jan
-
Thanks all. I remain convinced it will all be fine, but as you know, it does get a little scary now and then.
The tumor is la bit larger than a golf ball...4.4cm x 3.9cm x 4.1cm. Left side.
Tod
-
Hi Tod,
I just found out that I have a 3.2 cm AN and I am also consulting House. I'm hoping that they tell me the same thing Dr. LaRouere (MI Ear Institute) told me. He recommends Translab to avoid harming the facial nerve. Urgency was not mentioned unless I have new issues, although it's not something I should wait long to have done. My only symptoms are tongue numbness , slight facial numbness, slight ringing in the right ear, no hearing loss. I do have surgery scheduled for March 15th which gives me more time to research.
I'm so sorry about your diagnosis but it sounds like your doing your homework. I read somewhere on this site that the chances of winning the lottery are greater than being diagnosed with an AN. Ha Ha I guess I should start playing the lottery huh? Where do you live? Good Luck to You Susan
-
Tod ~
Thanks for the update but I'm sorry the news isn't as encouraging as you would have liked. Most of the folks posting/reading here have received that dreaded phone call. My PCP called my home at 7 P.M. - from his cell phone - to give me the news that my MRI indicated an 'acoustic neuroma'..."a big one"...and that surgery would be my only option. He sounded a bit grim and after asking what an 'acoustic neuroma' was I began doing my internet research. A few weeks later I was being wheeled into an OR for AN debulking surgery. Fortunately, all went well and I enjoyed a good recovery and later, uneventful but successful FSR treatments. I trust you'll have a similar experience, Tod. You're on the right track and of course, you have the support of all of your fellow 'forumites' including this one. :)
Jim
-
Hey Tod, sorry you are having to go through this, it is truly a tough time...but you'll get through it and before you know it, you'll be a "postie" and a very well informed one at that! Good luck and please continue to post on here if you have any questions or just need to vent.
Jays
-
Tod,
I've gotten a very similar phone call from my ENT, altho all he would tell me was that the MRI showed "something" and that it would require surgery to remove but he didn't do that kind of surgery. When I called his nurse the next morning to get a referral to someone who does that kind of surgery, she let it slip that "with tumors THAT big, we can't waste time".. I was floored and numb. So, I can certainly sympathize with the feelings that you have right now. As others have said, the journey can be difficult but not insurmountable. You've come a long way in the journey in a pretty short time.. I'm confident that in the end, things will be just fine. We're all here to help.
Regards,
Brian
-
Hi Tod,
For a newbie, you seem to be doing all the right things. You are researching, gaining knowledge and ultimately will make a well educated decision. I have been to House and if I can help in anyway, please send me a personal email. Whatever you decide, I wish you the best on your AN journey. Ann
-
Thanks again for the support. It is a good thing that I have spent much of my life practicing patience and caring for others. I know full well that my life could be so much worse off now. I am on Bi-Pap and that has helped a lot in just five days. We caught this soon enough that it the outlook is good, if somewhat challenging.
I have an awful lot of support: here, home, work, and all across the net.
So, I feel relatively lucky and have a pretty great life that will continue.
-Tod
-
The tumor is a bit larger than a golf ball...4.4cm x 3.9cm x 4.1cm. Left side.
Tod -
I may have missed this, but has any doctor talked about debulking your AN with surgery and then following up with radiation?
It's a fairly common practice these days with large ANs.
Jan
-
Not at this point Jan. We'll see what happens tomorrow. I'll add it to my list of questions.
Tod
-
Tod -
you definitely should ask. It's the best way to avoid facial nerve damage. The docs surgically remove the bulk of the tumor and then save a small piece that is later radiated.
Jim Scott had debulking; perhaps he'll jump back on this thread and give you more of his experience.
Jan
-
Dr. Schwarz mentioned that they might have to leave some of mass behind to protect the nerves associated with the vocal cords and swallowing. He was much more optimistic about the facial nerve being able to cleared.
Tod
-
Tod,
First,
HAPPY BIRTHDAY!!!
Secondly, I'm glad the doctor talked about leaving some of the tumor behind, i.e. debulking.
I'm sure Jim will chime in soon. This is common for large tumors.
Enjoy your day, hopefully you can put the AN on hold today ;)
Maureen
-
Tod ~
I underwent debulking surgery (retrosigmoid) for a large (4.5 cm) AN in 2006 and it worked out very well. The neurosurgeon basically carved out the center of the tumor and it collapsed on itself. By doing this he also cut off it's blood supply. The goal was to avoid disturbing the facial and other nerves. This was accomplished and I had almost no post-op complications. MY pre-op symptoms disappeared within 24 hours after the surgery. 90 days later, I underwent 26 carefully 'mapped' FSR treatments intended to destroy the DNA in the remains of the tumor. That appears to have worked out, too. Three years later, I'm fine and no signs of re-growth. My individual experience isn't a guarantee that every AN patient that has the same plan of treatment will have identical results - but it is encouraging...which is why I'm posting it to you.
Jim
-
Jim, that is basically what the neurosurgeon described. Only there was no mention of follow-up with radiation. Like I said though, I'll ask about that tomorrow. I appreciate your comments...and I am looking for no guarantees.
Most everything I have found on this site has been encouraging. And helpful.
Best and thanks to all,
Tod
-
Good meeting with the neurotologist yesterday. Meet with the neurosurgeon first thing Tuesday morning. Probably will be comfortable with staying in town with MCV. Things are on the right track...despite this golf ball in my head.
-Tod
-
Tod -
glad you had a good meeting with the neurotologist; hope the one with the neurosurgeon next week is equally as good.
Jan