Author Topic: Holy crap at the full range of mind games a AN brings.  (Read 14023 times)

sunfish

  • Sr. Member
  • ****
  • Posts: 343
Re: Holy crap at the full range of mind games a AN brings.
« Reply #15 on: August 26, 2010, 06:12:16 am »
I went to the opthalmologist with stuff that looked like floaters and seeing things out of the corner of my eye, and the doc said it's all neurological.  I now think it's probably eye movement problems similar to nystagmus, related to the vestibular system.  After all, the tumor is choking the "heck" out of that nerve.

The cranial nerve that affects swallowing can be affected by the AN and/or treatment.  Don't know how common this is, but I sure know I've had more swallowing problems since CK.

It seems many docs know less about these kind of symptoms.  Which is why (in retrospect) you should have your treatment done by someone with lots and lots of experience treating AN patients.  I had CK done by docs who had lots of experience with brain tumors of all sorts and CK, but little experience with ANs.  I think they did a fine job zapping the sucker, but have really muddled around trying to help me with the after-effects.

Funnydream, I've had just about every thought you mentioned in your post, and just about every symptom.  Was wondering last night if the low level stress of this whole experience will just gradually wear me down.

My goal over the next few days is to pray lots, and try to get a new game plan for my life.  In the short run, if the symptoms continue (especially balance/wonky head), just things I can tweak to make it easier on myself.  In the long run, if the symptoms continue, how I'm going to deal with this.  I think staying positive, keeping life simple, remembering the spiritual, and taking good care of one's health is a good plan.
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

GM

  • Hero Member
  • *****
  • Posts: 501
  • I hate annual MRI's !!!
    • My Blog Page
Re: Holy crap at the full range of mind games a AN brings.
« Reply #16 on: August 27, 2010, 03:44:25 pm »
FunnyDream....

Sounds like your in need of a shot of tequila and a cold beer!   We all stress out over these AN's...but you can't let it get to you.  It is absolutely easy to relate everything and anything to the AN....every eye twitch, headache, blurred vision (probably from the tequila  ;)  etc....

Try to not concentrate on it....if its the AN, you'll know it. 

Take care

GM
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Holy crap at the full range of mind games a AN brings.
« Reply #17 on: August 27, 2010, 08:42:49 pm »
A shot of tequila and a cold beer!

Now why didn't I think of that.

VERY good advice, GM  ;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

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: Holy crap at the full range of mind games a AN brings.
« Reply #18 on: August 28, 2010, 11:10:59 am »
LOVE your advice, GM!

You absolutely can't let this AN control your life - if you do, you will end up in a ball in the corner!!  :D  Do you have crazy fears about flying or driving because a LOT worse things can happen from that... ???

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

michelle d.

  • New Member
  • *
  • Posts: 34
Re: Holy crap at the full range of mind games a AN brings.
« Reply #19 on: September 06, 2010, 07:10:51 pm »
Love the title--"Holy crap...."  Pretty much paints an accurate picture of thoughts that have run through my mind, at one time or another, with AN! In all honesty, I have had my freak out moments but really, after awhile, it settles down and I now can see that life goes on, with a few differences and I'm fine.  What helps me a lot is motion (sounds weird) but if I stay active physically, I don't focus on the AN and it helps me to sleep more soundly at night, so I don't lie in bed and think about things too much. And praying helps too. :)  ~michelle d.~
Acoustic Neuroma on right side--removed Nov. 13th, 2009 @ Strong Hospital, Rochester, NY....Translab.   50 years old

Tod

  • Hero Member
  • *****
  • Posts: 661
    • My blog (work and life)
Re: Holy crap at the full range of mind games a AN brings.
« Reply #20 on: September 07, 2010, 11:49:55 am »
You'll know when you have a real problem with swallowing caused by the AN or post-surgical nerve trauma. It won't be just once in awhile. I think fewer than 20% of patients suffer from this problem...I'm one of the lucky ones. ;-)

It's not fun, but like all this other stuff it is survivable and hopefully temporary.

Hang in there. My sister and I went through this after Mom died from ALS. Every time something went wrong, especially with swallowing, is this ALS?

Turns out, I had a tumor. Beats the hell out of ALS. (IMHO)

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Soundy

  • Hero Member
  • *****
  • Posts: 1329
  • prophetic picture done by my 5 year old, June'04
Re: Holy crap at the full range of mind games a AN brings.
« Reply #21 on: September 07, 2010, 01:13:12 pm »
I have began to go in other direction ...kinda refuse to acknowledge anything is AN related (even if it is ) because I am surrounded by people who have decided that everything wrong with me is AN related when that is not always the case ... no easy answers ... and sometimes no answers at all ... will keep prayer rock in hand on the 17th ...
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

foodsmarts

  • New Member
  • *
  • Posts: 35
Re: Holy crap at the full range of mind games a AN brings.
« Reply #22 on: September 11, 2010, 08:16:53 pm »
I get the movements out of the side of my eyes too! Also the floater stuff that I guess is normal with age. The combo of the floaters, the
wonkiness, the tinnitus and those "side of the eye" movements, all combined, make riding in a fast car almost unbelievable. If they could put that feeling
in a video game, it would probably sell like hotcakes. Riding in a car at high speed at night is impossible. I shut my eyes and try to stay calm even though my
brain is saying "Slam on the brakes", "jump out of the car", PANIC!!
5.4mm X 3.2mm X 3.88 mm at diagnosis 8/28/08; 1.1 cm X .5 cm 6/16/09; CK Stanford Drs. Chang and Soltys 8/19/09

cin605

  • Hero Member
  • *****
  • Posts: 810
Re: Holy crap at the full range of mind games a AN brings.
« Reply #23 on: September 12, 2010, 04:10:31 pm »
I just got the floater thing about a month ago...i have what looks like a mosquito in my right eye...that along w/ the tinnitus,no night vision wonky head and pain in the neck....oh but nne of this is AN related. ;D
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Funnydream

  • Full Member
  • ***
  • Posts: 146
  • Texas in my room crying. Guys can't cry. DARN IT.
Re: Holy crap at the full range of mind games a AN brings.
« Reply #24 on: September 12, 2010, 05:28:14 pm »
I just got the floater thing about a month ago...i have what looks like a mosquito in my right eye...that along w/ the tinnitus,no night vision wonky head and pain in the neck....oh but nne of this is AN related. ;D

Saw my ENT last week. Gave him a hard time about the pain in my neck and the Helicopter blade sounds that are getting worst.

My ENT said the neck pain is from the fact that my balance is out of whack and that my muscles normally compensate for gravity. Since they think Gravity is not were it suppost to be they are contracting the wrong way all the time. Even while sleeping. Kinda weird if you ask me.

The Helicopter blade sounds I get are from the veins in my neck going to my brain being squished. And that's why it kicks in more when I look up for too long.

He said he wasn't sure on the floaters. But he assumed (yes that word) that my visual nerve is being squished. Not sure what to think of that.

My ENT is :
Ricardo Cristobal, MD, PhD
Otology, Neurotology and Skull Base Surgery

I googled up incomes of these doctors. I was very shocked to find that a ENT makes allot more than a BRAIN Surgeon.
Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

Kathleen_Mc

  • Hero Member
  • *****
  • Posts: 782
Re: Holy crap at the full range of mind games a AN brings.
« Reply #25 on: October 29, 2010, 04:02:54 am »
Funnydream: It looks like you just recently had your surgery.....it's easy to say but it's true  ::)"this in time will get better". I can remember all these type of anxious thoughts, still get them from time to time, they get easier to put from the mind the longer you go from DX/TX.
I am someone who gradually got better with all of this and then found a regrowth, I could live with THAT going on though (guess we all have our limits) and after a few years of watching got it removed purely due to my "MIND" (physically it didn't need to come out). Other than the anxiety period I had knowing it had regrown I have been pretty good with limiting my worry. Try to limit you worry time. For example set aside a certain time each day when you will think about it, worry, research, go on on this site and then when the time is up force yourself to do something else that requires your concentration and or of a physical nature. If the worries come to mind when "it's not time" don't let yourself entertain them, find something else to occupy your mind until it's "worry time again" . With practice this likely will become second nature/habit and maybe with time the worry time will no longer need to be.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

phx

  • Jr. Member
  • **
  • Posts: 91
Re: Holy crap at the full range of mind games a AN brings.
« Reply #26 on: December 21, 2010, 09:59:19 pm »
Oh yes!! I know what you mean. Everytime something happens, I feel like it's the AN. I'm so afraid I'm going to die from it. I get noises in my left ear and there's supposed to be no hearing left. Lately I've been hearing a helicopter noise in my right hear (mostly in the mornings right when I wake up). I am so afraid that I'm going to lose hearing in my right ear because that's the only ear I have left. I had surgery in February and radiation in August. I can remember  how scared I was at this time last year. I can't beleive it's going to be a year already.

 


anything