Author Topic: My turn to nuke the alien . . .  (Read 15140 times)

CHD63

  • Administrator
  • Hero Member
  • *****
  • Posts: 3231
  • Life is good again!!
Re: My turn to nuke the alien . . .
« Reply #30 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.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

6pick

  • Full Member
  • ***
  • Posts: 124
  • Light a candle rather than curse the darkness.
Re: My turn to nuke the alien . . .
« Reply #31 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?
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

free2be

  • Full Member
  • ***
  • Posts: 149
Re: My turn to nuke the alien . . .
« Reply #32 on: October 22, 2010, 03:11:12 pm »
Mark,

"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!

Handball...um, maybe where padding just in case!

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

6pick

  • Full Member
  • ***
  • Posts: 124
  • Light a candle rather than curse the darkness.
Re: My turn to nuke the alien . . .
« Reply #33 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
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

6pick

  • Full Member
  • ***
  • Posts: 124
  • Light a candle rather than curse the darkness.
Re: My turn to nuke the alien . . .
« Reply #34 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 .
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: My turn to nuke the alien . . .
« Reply #35 on: November 07, 2010, 10:30:56 am »
Mark,

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

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.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

6pick

  • Full Member
  • ***
  • Posts: 124
  • Light a candle rather than curse the darkness.
Re: My turn to nuke the alien . . .
« Reply #36 on: November 07, 2010, 02:27:37 pm »
Thanks Jan, your brief description helps a lot.

Mark
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

mk

  • Hero Member
  • *****
  • Posts: 968
Re: My turn to nuke the alien . . .
« Reply #37 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.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

BobbeDee

  • Newbie
  • *
  • Posts: 1
Re: My turn to nuke the alien . . .
« Reply #38 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
Bill

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: My turn to nuke the alien . . .
« Reply #39 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.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

JLR

  • Sr. Member
  • ****
  • Posts: 321
Re: My turn to nuke the alien . . .
« Reply #40 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 head...no of course not..it was just weird. I know I have radiation going on because of the minor symptoms I have but other than that..how 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)
« Last Edit: December 18, 2010, 07:56:19 pm by JLR »

6pick

  • Full Member
  • ***
  • Posts: 124
  • Light a candle rather than curse the darkness.
Re: My turn to nuke the alien . . .
« Reply #41 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.

http://carlzimmer.com/articles/index.php?subaction=showfull&id=1292521910&archive=&start_from=&ucat=13&

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.

Mark
« Last Edit: December 20, 2010, 06:26:43 pm by 6pick »
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

TJ

  • Sr. Member
  • ****
  • Posts: 282
  • 1.2 cm AN right side, CK November 2010
Re: My turn to nuke the alien . . .
« Reply #42 on: December 19, 2010, 07:36:07 pm »
Mark

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

TJ

6pick

  • Full Member
  • ***
  • Posts: 124
  • Light a candle rather than curse the darkness.
Re: My turn to nuke the alien . . .
« Reply #43 on: December 20, 2010, 06:28:56 pm »
Too true.
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

 


anything