Author Topic: Having a little issue  (Read 10084 times)

Jim Scott

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Re: Having a little issue
« Reply #15 on: November 06, 2009, 02:26:39 pm »
Nikki ~

Thanks for the comprehensive update and the good news, within.  I'm glad you're satisfied with the answers you received even if everything you've experienced wasn't immediately resolved.  Apparently you can safely watch-and-wait for another 5 or 6 months, which gives you ample time to decide on your treatment, be it radiation or surgery.  I wish you all the best as you move forward.

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.

Keeping Up

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Re: Having a little issue
« Reply #16 on: November 08, 2009, 12:25:41 pm »
Hey Nikki

You are joining a long crowd of southern ontario types in with the University Health Network medical crowd (Rutka/Baillie - surgical ENT types and Guha/Tymianski neurosurgeon types).  I would say between Anne Marie, Calimama and myself - we all really like the practice.  It is a very busy practice.  Rutka writes all  the conservative mgmt stuff so is well engrained in the treatment and progression (and surgical removal) of these tumors.  I got an appointment with Dr. Baillie (younger side-kick of Rutka ... better looking too  ;D )within a few weeks but that was likely due to the unknown nature of my condition at the time.  I would suggest none of the ENTs or neurosurgeon types would encourage gamma knife but will get a referral and leave the decision to the patient.  Expect a bit of a wait - but as I hear in the words you type, the condition lacks urgency.

I am back to see the ENT group in mid-December. It is a well run clinic.  Interested to see how my hearing ranks this time around.  My next MRI is sometime in late January (but will probablychange the date so will push it back into February - I don't expect an growth.)

Ann
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

opp2

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Re: Having a little issue
« Reply #17 on: November 23, 2009, 03:37:22 pm »
I got to see my doc finally and I spoke to Dr. Guha today. Yesterday I had an episode in the parking lot and went to the knee before I fell down. I was directly behind a car that was backing up and didn't see her. Good thing my Honey was there. Poor thing, no wonder he's always stressed. So I managed to half stumble to the curb where I sat for another 5 minutes. My 4 year old kept asking me if I hit my head, and if my head hurt. What a cutie. Trying to kiss it all away.

Dr. thinks it's a blood pressure thing, but said I should call Dr. G back right away so I did. I spoke to him this afternoon. He believes it is related to the pressure on the brain stem rather than the vestibular nerve. Either way, he's going to set me up with Dr. R and that radio oncologist. As for the 'falling down' I'm supposed to be careful, get up slower, and make sure I call him back if the symptoms escalate. This is 3 in 9 weeks. About one really bad episode every three weeks...(coinciding with hormones ??).

If things to progressively worsen, he will send me for another scan.

Hurry up and wait was much easier in the Army  :P
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

Dr. Dean

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Re: Having a little issue
« Reply #18 on: November 23, 2009, 04:36:58 pm »
OOP:

Your comment "it's like someone is sitting on the back of my head and my head actually leans forward with the 'pressure'" struck home with me.  It is the pain I felt in the back of my head for the first few months after GK surgery on a 15mm VS.
I also was also battling “dry eye” due to moderate dehydration, and it was very difficult to determine the main pain culprit.  Half the time I wasn’t sure whether the mostly dull pain was in the cerebellum or its close neighbor the occipital lobe, or both.  I finally figured it out by eliminating the cerebellum using exercises that I developed to “reset” (re-teach) the cerebellum.  The dry eye had little effect after that.  Bottom line, the majority of the pain and dysfunction was cerebellar, which may have caused swelling that affected the occipital cortex (possibly a reason for the light show).

Balance is controlled by the cerebellum using and interconnected system of semi-circular canals, eyesight, and the somatosensory (body awareness) system.  Once the eighth cranial nerve is damaged, the AN-ear semicircular canals are out of the picture (actually, in my case I wish they were, since they just send noise, not information, to my cerebellum).  You might ask, why doesn’t the other non-AN semicircular canals work, and the answer is, they are, but the cerebellum has all of it’s balance memories based on information from both L & R systems; frankly, it doesn’t know what’s going on, overworking trying, and causing arterial muscle pain.
And yes, an extremely important aspect of balance is lost with the semicircular canals, whether we are falling.  If in a dark room, or if we turn our head rapidly, we lose the sight aspect of balance, with only the somatosensory system left.  If we are not consciously aware of our footing, we have no idea of where we are.  And if we are falling (the most likely scenario), we don’t know it until we stop.  My first awareness of it was when I reached out to grab a towel in a slippery bathtub when the shower curtain hit me in the face as I turned my head.  The result was a split eye bone and a red tub.  The scary part was that I didn’t know I was falling until I was prone in the tub.  After this, I made sure that I had either a good sighting or good footing before making any quick turns.

For your concern, it is important to rule out cerebellar pain by getting your balance back.
See Balance: Dizziness, Headaches, and Cognition...an answer!  For more information.

I hope that this helps,

Dean