Author Topic: My turn to nuke the alien . . .  (Read 15136 times)

6pick

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Re: My turn to nuke the alien . . .
« Reply #15 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

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

free2be

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Re: My turn to nuke the alien . . .
« Reply #16 on: October 14, 2010, 07:48:25 pm »
Mark,

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

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

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Re: My turn to nuke the alien . . .
« Reply #17 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.

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

6pick

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Re: My turn to nuke the alien . . .
« Reply #18 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!

Mark

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.




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

ppearl214

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Re: My turn to nuke the alien . . .
« Reply #19 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" :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

free2be

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Re: My turn to nuke the alien . . .
« Reply #20 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.

Connie

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

moe

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Re: My turn to nuke the alien . . .
« Reply #21 on: October 17, 2010, 07:21:32 pm »
Mark,
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 :)
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

6pick

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Re: My turn to nuke the alien . . .
« Reply #22 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,

Mark
« Last Edit: October 19, 2010, 12:57:21 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

Lizard

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Re: My turn to nuke the alien . . .
« Reply #23 on: October 18, 2010, 11:17:34 am »
Thank you for sharing your experience with us, Mr officially toastie postie!
Love the mask pictures!

Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

questions?586

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Re: My turn to nuke the alien . . .
« Reply #24 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 .

Starr
AN 1.4 cm x 1.7 cm x 1.0 cm
fair amount of hearing loss right ear
diagnosed 7/29/10

I'm a fun and reasonable RN, now living far from appropriate medical care. Feeling overwhelmed!

leapyrtwins

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Re: My turn to nuke the alien . . .
« Reply #25 on: October 18, 2010, 10:15:57 pm »
Nice mask!  ;D
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

sgerrard

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Re: My turn to nuke the alien . . .
« Reply #26 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.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

free2be

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Re: My turn to nuke the alien . . .
« Reply #27 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.

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

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Re: My turn to nuke the alien . . .
« Reply #28 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?






« Last Edit: October 20, 2010, 12:01:29 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

free2be

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Re: My turn to nuke the alien . . .
« Reply #29 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.

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

 


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