ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: 6pick on October 09, 2010, 05:19:34 pm

Title: My turn to nuke the alien . . .
Post by: 6pick on October 09, 2010, 05:19:34 pm
My turn to leave for Stanford tomorrow for 5 fun-filled days of alien eradication. I'm scheduled for CK with Drs. Chang and Gibbs. CT scan and mask fitting at 7:15 am Monday morning. Tuesday is a day off, then treatments on Wednesday, Thursday, and Friday. I'm looking forward to my Postie Toastie designation.   ;D

See ya on the other side.

Title: Re: My turn to nuke the alien . . .
Post by: free2be on October 09, 2010, 06:58:10 pm

I was just thinking of you and your upcoming week. Try not to get a cold while you're there; if you can manage that, all will go well. Have some fun and enjoy your stay at the RCI (I assume). We enjoyed it...great coffee! That's important to me :)

Keep us informed.

Title: Re: My turn to nuke the alien . . .
Post by: leapyrtwins on October 09, 2010, 09:56:00 pm
Good luck, Mark.

Dr. Chang is one of the best.  You are in excellent hands.

Title: Re: My turn to nuke the alien . . .
Post by: 6pick on October 09, 2010, 10:15:22 pm
Thanks, Jan, I appreciate your support.

Ooh, Connie - I didn't think to tell you about the excellent coffee at RCI, I'm glad you stayed there and experienced it. I'm a big fan, too. Yes, we're staying there again, and I'm going to ask for extra coffee . . . full bodied, no decaf!

Title: Re: My turn to nuke the alien . . .
Post by: Jim Scott on October 10, 2010, 01:52:04 pm
Mark ~

I'm sure you'll have a successful CK procedure but prayers will be said for you and positive thoughts are coming your way.  See you as a 'postie-toastie.:)

Title: Re: My turn to nuke the alien . . .
Post by: 6pick on October 10, 2010, 07:41:50 pm
Thanks for the welcomed prayers, my intention is to keep you post-ed   8)

I'm settled in at the hotel, pouring a glass of wine. My wife asked me if I was stressed. I am not.

I thought out loud, though, that I notice some of the other AN posters seem to be stressed "going in" and it makes me wonder, am I missing something? Should I be stressed? (Her response was supportive of my having been keeping busy with no time to think about it and, therefore, whether I am missing something or not, it doesn't matter.)

For me, none of the choices are clear. But I made a choice and it's time to get on with it. Am I worried about the aftermath? I recognize that there will be an aftermath. But I am happy to be here taking action against this intruder. I am hopeful that the tinnitus will disappear (although I realize that in some it doesn't and may even increase), I am hopeful the occasional pain (AN side headaches) will disappear. But my focus it to be confident that everything will turn out perfectly. I am a very lucky man: the tumor is benign, I have one very good ear, I have some of the very best doctors helping me, I have so many people supporting me on this forum, I have so much going for me. Stressed? No, excited! Let's get on with it!

Title: Re: My turn to nuke the alien . . .
Post by: moe on October 10, 2010, 08:17:14 pm
Great attitude, Mark!
Good luck tomorrow. Everything will hopefully go as planned and you'll be nuked before you know it, and on your way. (x5)
let us know how things go!
Title: Re: My turn to nuke the alien . . .
Post by: nanramone on October 10, 2010, 08:59:51 pm
Good luck!
Title: Re: My turn to nuke the alien . . .
Post by: leapyrtwins on October 11, 2010, 07:07:00 am
Mark -

I think stress depends on the individual.  I didn't have CK, but I was very calm the day of my surgery and all the days leading up to it once I made my decision. 

IMO when you have a game plan and are confident of your choice and your doctors, a whole lot of the burden is taken off your shoulders.

I'm sure things will go well today.

Title: Re: My turn to nuke the alien . . .
Post by: Doc on October 11, 2010, 10:53:39 am
Been there done that....piece of "irradiated" cake...nothing to it. I still have my mask hanging from the wall here in my office. Looks like that water creature from the movie, Abyss...pretty cool!

Best of Luck Mark!

Take Care!
Title: Re: My turn to nuke the alien . . .
Post by: 6pick on October 11, 2010, 04:51:20 pm
Hey thanks, Maureen, nanamone, Jan, and Doc (I get to keep my mask? Cool. I've got just the place . . .).

Greetings from Palo Alto . . . well actually, I’m in Menlo Park. I’ve just undergone day 1 getting fitted for my mask/cradle, having the CT scan and MRI ending with an audiogram. Everyone who has helped me so far has been extremely kind.

In case any newbies want to know what the procedures might be like while going through them, I thought I might jot some notes about what I am experiencing at Stanford University while undergoing the CK treatment.

After fitting me with an IV for injecting the contrast material/X-ray die, and don’t forget all the paperwork, the CT scan came first. Sandy asked me to lie on the table that moved into the machine and fitted me with the mask/cradle right then and there with the help of Dr. Lieberson, Assistant Professor, Neurosurgery. Sandy placed the cradle material under my head and began to knead it to start it’s solidifying to shape. The cradle (Sandy likes to call it a pillow) was just a soft lump of stuff that my head rests on taking the form of a base to which the mask attaches rendering my head motionless (of course, that’s the point). Dr. Lieberson then brought the mask material over and it appeared to be a rectangular piece of green cloth with diamond shaped holes in it measuring maybe about 5” by 15”. They warned me that it would feel like a wet cloth, and I suppose it did – but not so wet as I imagined it would feel. They laid it across my face covering only my chin, mouth, and part of my nose. They then pulled it up to cover my forehead, attached it to the cradle, and told me it was going to tighten up – which it did in mere seconds.

All of the above was the exciting part. The rest is just sliding into the CT scanner for I guess 10 minutes or so (one loses time in those things) and then on through the Stanford University maze of hallways to arrive at the MRI department which, until their planned move by November 11 this year, was a pretty cold place (temperature-wise). About 10 minutes waiting then into the tube, about 15 minutes of imaging then out and done until my audiogram at 1:00 pm.

My appointment began at 7:15 am (and one of the nurses was calling in late as I arrived) and I was out by 10:00. The worst part for me was no food or drink except water 4 hours before the procedure and the directions to drink at least 8 glasses of water after the procedure before I have any coffee, soda, or alcohol (I am a coffee snob and I like my red wine). So all in all, a pretty simple, fast, and painless day 1.
Title: Re: My turn to nuke the alien . . .
Post by: LisaP on October 11, 2010, 05:44:07 pm

Thanks for the info, I am W&W and like to know how others are receiving treatment.  Keep us posted on how things go.

LisaP ;D
Title: Re: My turn to nuke the alien . . .
Post by: moe on October 11, 2010, 07:42:18 pm
Kinda scared me there, Doc!
Is that what you get to keep on your wall? You could also rob a bank if that if you wanted (halloween is around the corner too).
Again, best of luck, Mark!
Title: Re: My turn to nuke the alien . . .
Post by: free2be on October 12, 2010, 06:24:52 am

My recent experience with the Stanford CK mask and CT was exactly like yours (except our faces are different so my mask wouldn't fit you. :) It was a very quick and easy process; much faster than i had imaged. And i agree, the worst part was no coffee or caffeine before hand and none until drinking 8 glasses of water to get the contrast material washed out. But, I'm glad they are insistent on getting rid of that stuff, but boy did I want my coffee! That's your longest day. The treatments don't take that long and are no big deal. The mask was tight the first day and then they adjusted some things for me (cut out my nose cover; I knew I had a big nose, but now it feels like it was huge). It didn't help that I had that stupid cold. I have a picture I had them take too, but I'm not so sure about posting it. It is certainly not my best image!

I hope you're having some fun today. If you were going into San Fran or anything, I should have sent you our BART passes as we had money left on them.

It's good that you aren't nervous. I was just stressing about the whole natural aspect, but once they gave me a little more detail about the bugger being bigger than I thought, it was obvious what I needed to do. Once I really made that decision, I wouldn't say I was nervous...I was something...I just kept saying, "it's just another day, right"?

So, relax and enjoy your stay. I assume the weather cooled down from when we were there. I was disappointed it was so hot for our visit.

Title: Re: My turn to nuke the alien . . .
Post by: 6pick on October 13, 2010, 08:23:54 pm
Doc, I think we all should make it a tradition to post our picture-in-mask on this forum - what d'ya think, Connie?

Connie, thanks for the BART pass offer, but we went west. My wife used to live in this area and frequently visited her mother living in Santa Cruz, so a trip down the coast was memory lane for her. The weather prediction was low 70s all week, but it's been in the 90s since we've been here . . . go figure.   ???

My experience in this process so far is just what Connie and Doc have said here - ain't no big thing. But for anyone wanting to know why it "ain't no big thing", read on:

I’ve just undergone day 3 – day 2 being a day off and a trip for my wife and me to the coast where we downed a beer sitting on the sand watching surfers and sea otters at Scott Creek beach. The doctors and technicians spent the day programming the robot.

But day 3: the room is smallish with little but the robot and the table upon which I laid (and a little CD player with great music). Dr. Gibbs was there briefly along with another doctor (whose name escape me, but I’ll try to get it for tomorrow) and two CyberKnife therapists (one of whom introduced himself as Jackie). After I took a steroid for swelling (Dr. Gibbs described my alien as “generous”) and a pill for nausea, we got right to it – I want to fry this sucker. I was down for about 45 minutes with the mask securing me to the table. It was a bit tight, but that’s the point. The pressure was mostly at the nose, mouth, and chin. They kindly asked me if I was warm enough and, even though I was fine at the time, I get cold easily, so to be prepared, Jackie brought me a blanket. The therapists folded around me a “wrap” of sorts to keep me on the table. My wife shot a picture that I’ll try to upload when I get home and everyone left the room so the party could begin.

As I mentioned, I was down for about 40 minutes. It was very quiet in the room. The volume on the music was very low and I could hear it clearly. The therapists came in to check on me after about 30 minutes and reassured me that the small head movements I was forced to make swallowing from time to time, or from taking deep breaths offered no challenges to the procedure. The in-room controller lasers would readjust the robot as needed and if my positioning got too out of whack, the therapists would see it from the control room from which they monitored constantly and would stop the procedure, come out themselves and readjust my table.

Right now it’s 3 ½ hours post treatment. I have fullness and tinnitus but I can’t say it’s any more or less than it was last week. Dr. Gibbs said I might have the fullness, but in any case, there is no pain.

I expect I'll write tomorrow, but I don't expect I'll have much to say that will be different than what I've written today.

'K, time for wine . . .

Title: Re: My turn to nuke the alien . . .
Post by: 6pick on October 14, 2010, 04:31:06 pm
Day 4 - as I stated yesterday, not much different. Larry Jang, the technician extraordinaire who "had been there forever and knows more about the operation of the CK machine than anyone" attended to me by himself, although Dr. Lieberson was present. While I listened to Eva Cassidy yesterday, I got Faith Hill today. Same medications: Dexamethasone (4mg) for swelling, and ondansetron hydrochloride (8 mg).

Since I arrived a little early, I was able to spend some time with Dr Lieberson to clear up a question or two. The impressive thing was that when my session was over, Dr. Gibbs was there to make sure I was satisfied with what I learned from Dr. Lieberson. Well, I think that's pretty impressive.

Ok, so the room isn't completely bare, there are some rolling shelves with bed linens (I guess) for the CK table.

One day till official Postie Toastie-ism

Title: Re: My turn to nuke the alien . . .
Post by: free2be on October 14, 2010, 07:48:25 pm

I've been thinking about you the last two days. Glad you posted and everything is going well.

They are giving you your steroid and nausea medicine before the procedure? I had mine right after the CK each day.

I'm glad you've seen Dr. Gibbs each day. I was a little disappointed that I only saw Dr. Soltys one day (the 1st) of the procedure. I didn't see Dr. Chang at all after the initial consult. But Dr. Lieberson and, I believe it was, Sandy were very attentive, informative, and nice. I took a picture with them; I kind of felt like they were my saviors in the medical technology world.

I'm wondering what kind of additional information you got from Dr. Gibbs. Probably nothing that I don't know, but curious nonetheless.

I hope tomorrow goes easily for you. Keep me informed as to how you are doing. It's been two weeks for me now!

Um...I'll think about the in mask photo :o

Title: Re: My turn to nuke the alien . . .
Post by: 6pick on October 16, 2010, 11:55:24 am

I'm wondering what kind of additional information you got from Dr. Gibbs. Probably nothing that I don't know, but curious nonetheless.

Connie, do you have any specific questions about what Dr. Gibbs might have said to me? This whole journey has been a lot and I don't mind admitting that there's a pervasive fog over some of the information - you know, who said what.

PM me if you want or ask right here on the site. I'll answer as best as I can.

Title: Re: My turn to nuke the alien . . .
Post by: 6pick on October 16, 2010, 12:21:07 pm
Day 5 – well, that was yesterday. A four hour drive home (for my wife) but we were both pretty tired when we arrived so, I’m writing today.

Again, pretty much the same as before. Larry Jang attended to me by himself (as far as I could tell, I was strapped down and in the CK room by myself), but I received a very welcomed and warm visit from Sandy Kuerth, the therapist who attended to me on day 1 with the CT Scan. I know she probably wanted to stop by sooner, but they’re all pretty busy. Still, the care and warmth exhibited by every single team member relieved me of most of the stress of the process.

Day 3 it was Enya. I don’t know how important it is to anyone, but I could have chosen any music I wanted including plugging my iPod into the speakers. I like most music so, I was happy – hell, I was happy being there dealing with that little sucker.

Same medications: Dexamethasone (4mg) for swelling, and ondansetron hydrochloride (8 mg). Connie, this time they gave it to me after the fact. It really didn’t matter, they said, it was more a result of when the dispensary got the meds to the CK Lab.

So we took a bunch of pictures, and I’ll see if I can get them into this thread. I don’t know how Doc got his into the body here, but I’ll try.

As for pain; none to speak of. At times I thought I could feel my alien objecting a bit (I should really give him a name), but it certainly could have been my imagination. Some on this forum have mentioned neck pain. I experienced some of that yesterday on the trip home and it persisted into the evening. It’s like a stiff neck but seems to be 98% gone this morning.

I believe I am now an official Postie Toastie!


So photo below has Dr. Gibbs, my wife, me, Sandy Keurth, Larry Jang, and Dr. Jan Eckermann. Below that, I'll post my mask picture.


Title: Re: My turn to nuke the alien . . .
Post by: ppearl214 on October 16, 2010, 02:16:43 pm
Dang, Mark... you and Steve Gerrard got blue masks at Stanford... I got me a white one from Beth Israel..... so, fess up, did you have fun with the Hannibal Lechter look? Did you enjoy the mask/mush-face? :)

thanks for sharing these pics... most helpful to those that truly want to see the robot up close and personal, as well as the "plastic fish net stocking" mask.

congrats on being a "toastie postie" :)

Title: Re: My turn to nuke the alien . . .
Post by: free2be on October 16, 2010, 10:17:52 pm
Well done Mark. Not only did you officially become a postie tostie, but you did it with such style. You got a picture of the whole group including the robot (you didn't add his or her name to the photo list though)! They introduced my CK robot, it had a name, though frankly I could not tell you what it was. From your description of the room, I've determined we had different CKs. They have two and I was in number 2.

I'm glad everything went well for you and it is now behind you.

I don't guess I had a specific questions, just was wondering in general I guess. I need to touch base with Dr. Chang.

You take it easy and let me/us know how you're doing in the coming days and such. I guess we can compare notes since there's only 2 weeks between our toastings.


Title: Re: My turn to nuke the alien . . .
Post by: moe on October 17, 2010, 07:21:32 pm
Thanks for the picture and day by day scenario. I had translab, but am interested to see how it all worked out.
This will be great for others who are going through CK.
Rest easy,
Maureen :)
Title: Re: My turn to nuke the alien . . .
Post by: 6pick on October 18, 2010, 11:11:18 am
Thank you Phyl, I'm still having fun with the HL look. Notice my tweaked nose in the mask photo?

The mask itself never irritated, not even my mustache. For Thursday and Friday, we removed the bubble-wrap padding from the cradle (you can see it in the group picture) to give me a little more room and it seemed to help a lot. The result was some slight irritation on the back of my head near the end of the session.

Connie, I don't remember being introduced to the robot by name. I also don't remember being introduced to another valuable member of the team who is on the right in this picture (note to Stanford folks who are reading this and are always looking for ways to improve - I found it extremely valuable to receive a business card from everyone with whom I worked or who worked with/on me. I might not have remembered their name after I was introduced, but having the card allowed me to go back and reintroduce myself to him/her):


I didn't know there were two machines. The building I was in was across the street from the parking structure. It's where the Burrito-mobile parked out front in the morning. Did you try one of those? We were pretty tired of RCI breakfast by Friday morning so I got a breakfast burrito - it was definitely worth the $4.50.

Anyway, I don't think Dr. Gibbs told me anything Thursday morning that would be generally helpful to all. It was more clearing up and filling in information and some residual confusion I had that led me to ask Dr. Lieberson some questions that morning before my session. Probably one of the more valuable things I took away was that of all the stories we hear and read, we're all going to have our own experiences. It all comes full circle to what we learned when we first found this forum: that everyone's AN is unique and the path we choose (and the results of that choice) is ours alone. The strength of this forum, to me anyway, is that even though I'm on my own path, I don't have to feel alone. I thank everyone here for that.

Maureen, my hope was that I might help someone in their apprehension about this process, to give them a day-by-day account of my experiences (at least on the table) so they would know what to expect - and maybe take that element of fear away. So thank you.

Finally, it's Monday - I had my 3rd CK session last Friday (3 days ago). I was pretty tired Saturday so I just zoned out watching mindless TV, did some computer work Sunday but woke up this morning with a really weird head. Doc, is this what you call "Wonky Head"? or is that the name you give your AN? Because from the moment I awoke, Wonky Head is exactly what I felt like.

Ok, so talk to you all soon,

Title: Re: My turn to nuke the alien . . .
Post by: Lizard on October 18, 2010, 11:17:34 am
Thank you for sharing your experience with us, Mr officially toastie postie!
Love the mask pictures!

Title: Re: My turn to nuke the alien . . .
Post by: questions?586 on October 18, 2010, 10:12:22 pm
I'm glad you're well toasted!  Thank you for sharing your story.  It is really helpful to me .

Title: Re: My turn to nuke the alien . . .
Post by: leapyrtwins on October 18, 2010, 10:15:57 pm
Nice mask!  ;D
Title: Re: My turn to nuke the alien . . .
Post by: sgerrard on October 19, 2010, 12:46:49 am
Now that brings back memories. ;)

The best thing is that with any luck, in a few years it will just be memories for you too.

Take care, and don't be too surprised if you have a little swelling event sometime in the next few months. Its just part of the package.

Title: Re: My turn to nuke the alien . . .
Post by: free2be on October 19, 2010, 08:08:47 pm
So, Mark. How are you feeling today? Still Wonky?

I am getting something "like" that periodically, but especially when I do too much, which right now seems to be anything that involves being up and moving for more than 3 hours. The fatigue is still kicking me. I've had some head pain and a facial little numbness.

I was wondering, Steve and anyone else, if I'm going to have serious symptoms from swelling at what timeframe might they start, or when might I be in the clear if I don't have them?

Not trying to hijack your thread, Mark, but figured with our CK treatments timing being so close and you might have similar questions.

Let me know how you're doing.

Title: Re: My turn to nuke the alien . . .
Post by: 6pick on October 19, 2010, 11:06:14 pm
Starr, glad my small contribution can be helpful. Let me know if you have any questions, although there are many of us who have similar experiences.

Thanks Liz, Jan, I'm grateful to be on this side of the journey. I am now ready to watch & wait.

Steve, thanks for your forecast of potential events to come. This information is invaluable to me as you well know.

Connie, how soon after treatment did you start noticing the face issues?  I have none at this time - 4 days out. The "wonky" hit me briefly today, as you say, after doing some work and yes, I get tired pretty easily.

As for "hijacking my thread", please, I consider this "community property" and I'm grateful that you're jumping in. Your question to Steve is excellent. I'm eager to read his reply. Besides, I believe I jumped into one of your threads so feel free - aren't you free2be?

Title: Re: My turn to nuke the alien . . .
Post by: free2be on October 21, 2010, 08:06:54 pm
LOL, Mark; yes, I am "Free2be," but so is everyone else!

I actually started noticing the face pain and a little numbness right away. I had the pain the first day of the treatment. Weird, I know. The numbness became more apparent in the days after. It is limited to a small area and I'm not too concerned. It's not "bad" just annoying. Dr Soltys did tell me that the tumor was/is "close" to the trigeminal nerve (this was new news). So, it may be related to that and not "just" the facial nerve that runs from the auditory canal. They both run close through the face, though the facial nerve is much smaller, and so I haven't really tried to figure it out. I haven't sent an e-mail to Dr. Chang to inquire either.

The last two days (3 weeks out) I've had a bit more head pain/ache and a little more equilibrium issue, but, again, not "bad." Though the head pain could back down again and I'd be happier about it :) My equilibrium had actually improved for a while before I went for treatment. Perhaps due to the natural anti-inflammatory stuff. I'm still on it all, but I think it has a bigger job to handle now.

I'd like to say that I'm not as fatigued, but I'd be lying. I saw the endocrinologist today and he wasn't surprised given my Addison's on top of the radiation. Just have to respect "it" and take it easy and "take one day at a time." If one more person tells me that I'm gonna scream!
(And that's not an invitation to see it I will!).

So, I guess we have a pass to "take it easy" and not push. While I'm not sure I agree, people have tried to remind me that my body has been through a major ordeal and it needs to heal. I guess, since it wasn't surgery and seemed easy enough to get through, we may forget that we have been assaulted by radiation on a delicate part of our body and that it has an impact.

Title: Re: My turn to nuke the alien . . .
Post by: CHD63 on October 22, 2010, 07:42:00 am
Mark .....

I did not jump in on this thread because I really had nothing to add.  However, I just finished reading all of the posts and on behalf of future newbies, want to say thank you for the tremendous description of your experience, complete with pictures.  This thread will be reassuring to many who have decided upon, or are contemplating having radiation treatment for their ANs.

Best wishes for continued good recovery.

Title: Re: My turn to nuke the alien . . .
Post by: 6pick on October 22, 2010, 12:11:14 pm
Clarice, thank you for the good wishes and thank you, too, for validating my goal to describe my experiences so others will know what to expect. I'm glad to help.

Connie, you know, my wife continues to tell me that very same thing about my body having been through a major ordeal and it's needing to heal. I don't want to believe it either because it certainly didn't feel like any real ordeal, but I guess you have to pay attention to your increased head pain/ache and equilibrium issues. As for me, I have to pay attention to the changes in tinnitus volume and equilibrium - both of which have gotten worse. The tinnitus seems, I don't know, maybe 10% louder; the equilibrium is maybe 5% worse (I wonder how it's going to affect my handball game next Monday). In other words, some advice for both of us: "Listen to our bodies!"

Well, I won't tell you to take one day at a time . . .  :D  but I think every day is going to be different for a while.

I'm not sure I understand what you said about the trigeminal nerve. Dr Soltys told you that the tumor was/is close to the trigeminal nerve, but I thought the facial nerve that runs from the auditory canal is the trigeminal nerve. Maybe this is a good time for some clarification. Aren't there four nerves running through the auditory canal? Aren't they (2) hearing, (1) balance, and the trigeminal? What's wrong with my picture? Maybe someone can help out here?
Title: Re: My turn to nuke the alien . . .
Post by: free2be on October 22, 2010, 03:11:12 pm

"As I understand it" (and I'm NOT a doctor), you are correct, there are three nerves in the auditory canal. The trigeminal nerve is at another level and not in the auditory canal. I'm assuming that the part of MY tumor that is outside the canal is what is getting close to the trigeminal nerve, though I can't say that for sure now that I write this. The trigeminal nerve, "as I understand it," is a different nerve than the facial nerve (the one that runs through the auditory canal). The trigeminal is much larger and has 3 branches of its own. I found a good graphic the other day. I'll see if I can locate it again.

Yes, I think you are correct, every day may be a bit of a new adventure for a while. We can hope not too much of one!, maybe where padding just in case!

Title: Re: My turn to nuke the alien . . .
Post by: 6pick on October 22, 2010, 05:09:41 pm
Yeah, I should look into getting a football helmet maybe, or maybe one of those head guards that boxers use when they're practicing. Think Big 5 might have one?   :D
Title: Re: My turn to nuke the alien . . .
Post by: 6pick on November 07, 2010, 10:10:11 am
Just to catch up: I played handball three days last week and the Friday before that. I didn't have any noticeable balance issues - I didn't fall down, I didn't run into the wall . . .  I missed the ball a bunch of times, but that only speaks to no improvement in my game. I don't think it has anything to do with the AN or it's treatment - although I admit I was hoping the radiation might have a variation on the Spiderman Effect :D .
Title: Re: My turn to nuke the alien . . .
Post by: leapyrtwins on November 07, 2010, 10:30:56 am

"As I understand it" (and I'm NOT a doctor), you are correct, there are three nerves in the auditory canal.

This is correct - the hearing nerve, the facial nerve, and the balance nerve.

Hearing nerves are very thin and fragile - once damaged they do not regenerate.

Facial nerves are a little more sturdy (but not much) and they stretch.  They have the ability to regenerate over time but sometimes it takes a while.

If one of your balance nerves is damaged, the other one takes over and the body learns to compensate for the loss.

I'm not a doctor either, but I learned this from my doctor when I was first diagnosed with my AN.

Title: Re: My turn to nuke the alien . . .
Post by: 6pick on November 07, 2010, 02:27:37 pm
Thanks Jan, your brief description helps a lot.

Title: Re: My turn to nuke the alien . . .
Post by: mk on November 08, 2010, 06:35:59 pm
And actually the hearing and balance nerves are actually one nerve, the vestibulocochlear, with two branches, the vestibular (balance) and the cochlear (hearing). ANs (or vestibular schwannomas) grow in the majority of cases on the vestibular portion, which of course gets damaged first.

Title: Re: My turn to nuke the alien . . .
Post by: BobbeDee on December 18, 2010, 01:01:20 am
Mark, I have just read all of your posts and it is just what I've been looking for.  I was diagnosed in October, 2005 with a very small AN in my left ear, 3mmx4mmx6mm and after seeing a prominent surgeon in the Seattle area decided to W&W.  Had annual MRI's and for years, actually stabilized in size.  During that time did research on GK and microscopic surgery at the Skull Base Institute.  In 2009. I had two imbalence episodes where I fell to the right and a subsequent MRI showed the AN had doubled in size and now was 6mmx9mmx12mm.  More research revealed that CK seemed to give an edge to preserving hearing (which I'm very interested in) as I'm currently wearing a hearing aid to compensate for 40% hearing loss at the high end of the spectrum.  I'm scheduled for the mask fitting, MRI, CTI and consult on December 27, 2010, so your timing couldn't have better.  Your description of the day has taken much of the anxiety out of my vision of what was going to happen.  Your goal for writing your experiences has been achieved -- at least for me.  Congratulations and THANK YOU VERY MUCH!!!
Even though we each will have our own AN experience, I hope you continue to write about what you are experiencing post CK.  The loss of hearing and the two loss of balance episodes are the only symtoms I've had, so when I read about others post ck experiences, I get very concerned.  My doctor tells me the location of the AN seems to be very important as to the post CK effects, i.e. if the location is deep in the inner ear canal with little or no  space to expand if and when any swelling occurs, then there is more potential for side effects.  If the AN has grown outside of the ear canal, chances are better for fewer side effects.
Glad you are Postie Toastie and hope you continue to play hadball and any other activities you wish.
Best regards
Title: Re: My turn to nuke the alien . . .
Post by: Jim Scott on December 18, 2010, 03:45:48 pm
Hi, Bill ~

I just wanted to welcome you to the ANA website and, specifically the Discussion Forums.  I'm delighted to learn that Mark's account of his CK experience has been both informative and encouraging for you.  This is the essence of the forums; to inform and support other AN patients, no matter what form of treatment they choose.  We appreciate your input and of course hope that your upcoming CK treatment goes well.  Now that you've joined the forums, I hope you'll continue to update us on your CK experience. Thanks.

Title: Re: My turn to nuke the alien . . .
Post by: JLR on December 18, 2010, 07:40:24 pm
Hi All, Those step by step ck adventures have been amazing and very very helpful to me.  I was a bit nervous but after reading Mark, Phyl, TW, Sunfish, Barb, and others it made the whole process seem way easier. I am about 3 weeks post CK and have an appt next week with my Radiologist Oncologist for a follow-up.  Wants to be sure Im OK and not in need of any medication to relieve any unbearable symptoms.  I have been AOK.. I do have increased tinnitus, infact at times, it is sooooo loud. I'm sorry to say..I'm getting used to it.  I had some pain behind my right ear which kind of came and went, went through a real wonky stage the first week,My ear does feel a bit numb inside but I dont think its something awful. No more spinning room and general balance is good, Have some numbness on right check and around my mouth but had that prior to CK and its not any worse. So here are my thoughts.. CK is sort of surreal as we can't see, hear, or feel radiation..I watched (at times) the robotic arm swing around and many times it just came so very close to my head, (your right Phyl the "eye" does come mighty close) but, did I actually see the 18 total gys go into my of course was just weird. I know I have radiation going on because of the minor symptoms I have but other than do we really know.  Ok Im just venting and trying to put together a list of questions and comments for my doctor. Thanks all for listening.  Have a wonderful, peaceful holiday and a happy and healthy New Year!  Joan 8)
Title: Re: My turn to nuke the alien . . .
Post by: 6pick on December 19, 2010, 03:11:21 pm
Bill, welcome to the site, nice to meet you. Of course, it is unfortunate that we meet under these circumstances.

I am truly grateful that my post has helped you, and you, Joan, in any way. As Jim points out, "the essence of the forum is to inform and support other AN patients" and I am always grateful when I learn that something I've posted has been a help to someone.

I want to thank you, in turn, Bill, for your contribution. I did not know that the location of the AN is relative to the post CK effects. Mine, as far as I can tell from the MRI, completely fills my auditory canal. But I get lucky again, in fact, I've always considered myself very fortunate, I have seem to have very few post CK effects. My Tinnitus can get louder than before, like Joan, but it is a steady "white noise". I was just reading that "some [early physicians] were convinced [tinnitus] was caused by wind that got trapped inside the ear and swirled around endlessly, so they tried to liberate the wind by drilling a hole into the bones around the ear or using a silver tube to suck air out of the ear canal". That's the kind of sound I get and again, how lucky that I didn't have to get my head drilled to let try to let the wind out  :D.

I've had a few "wonky" days and my balance suffers a little more, too, and I'm beginning to notice that a small, dull pain from time to time just behind my ear right where the skull seems to end occurs from time to time. I don't know what that is but it could be related - or not. Is that what you're referring to, Joan? I don't notice any numbness, though.

One other issue I've noticed since the drive home from Stanford. As a passenger in the car, I started noticing a "stiffening" of my neck. It was probably stress and a warm compress seemed to end it by morning. But I've noticed since then a strange "popping" in my neck much like when we "crack our knuckles". It happens at odd times. Noticeably when I'm, maybe, sweeping the garage floor. My head is bent down and I'm looking sideways. I wonder if anyone else has had a similar experience.

So Bill, one small point that really is more "bragging rights" if you want. Your tumor went from 3mm X 4mm X 6mm enlarging to 6mm X 9mm X 12mm. That's not actually doubling. Measuring by volume, it increased in size from 72 cubic mm to 648 cubic mm. It increased nine times! It didn't just double, it nontupled!

Happy holidays, everyone.

Title: Re: My turn to nuke the alien . . .
Post by: TJ on December 19, 2010, 07:36:07 pm

Isn't a good feeling to finally to do something about these things in our head.  I was not nervous, but I really wanted to get it done to be on the other side of treatment.  I had CK one month ago, my headaches are gone hopefully your's will be also.  I do have increased tinnitus and have been on steroids hopefully it will either go away or at least go back the level before CK.

Enjoy the moment knowing that you have done something to get rid of it.  As always we can only take one day at a time.

Take Care

Title: Re: My turn to nuke the alien . . .
Post by: 6pick on December 20, 2010, 06:28:56 pm
Too true.