Author Topic: I need help - TODAY!  (Read 9761 times)

kiwi

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Re: I need help - TODAY!
« Reply #15 on: March 12, 2010, 07:39:48 pm »
wow petgroomer, Im sorry to hear of your uncomfortable pain and the ignorant doctors that treated you (or didnt treat you).  I use to think I was born in the wrong country when it came to tumours but I'm not so sure now....anyway I don't know if this is any help seen as I live downunder but I take a mixture of paracetamol ( headache pills - tylenol I think over there) and codeine for my pain and it seems to work a treat and helps me sleep.  I'm not sure if it is readily available by prescription or OTC there. 

I hope you feel better soon
Jacqui
3.6cm AN Left side diagnosed Dec 09.
Translab surgery 16th March 2010
Left SSD, Facial Paralysis
CSF Leak surgery 11th May 2010

opp2

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Re: I need help - TODAY!
« Reply #16 on: March 13, 2010, 07:11:40 am »
Or take a trip to Toronto General or the Western. At least they have treated these tumours and could be of some help. It might be worth the 2 - 3 hour drive. Both have emergency services.

Virtual hugs and strength to deal with these seemingly incompetent, and obviously oblivious folks.
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.

lawmama

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Re: I need help - TODAY!
« Reply #17 on: March 13, 2010, 07:33:40 am »
WHAT???  That is outrageous to me.  How could a doctor behave that way?  I'm upset for you.  Obviously he isn't an expert in these types of tumors, so how does he know what kind of pain it might cause? 

I'm so sorry you were treated that way.  I hope you feel better soon.

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

tenai98

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Re: I need help - TODAY!
« Reply #18 on: March 13, 2010, 08:01:43 am »
Lyn
I think because these are rare tumors, the docs mostly go by text book theories...My neurosurgeon told me that acoustic neuromas do NOT affect memory...I beg to differ...I am known for having or should I say use to have a great memory, but now there are holes in it...I believe that doctors need to listen to patients at times in order to learn something...I had to explain to my ENT about cyberknife as he never heard of it...well now he did his reseach and is thrilled with it...
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

petgroomer

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Re: I need help - TODAY!
« Reply #19 on: March 13, 2010, 06:35:28 pm »
Hey guys... another day... :)
I think stress brings on more pain.  I am definately feeling better today.  I was stressed about a certain issue this week and I really feel this brought about the extra swelling and pain.  I have the regular pressure but not the excruciating pain and fullness I was feeling.
I am SO THANKFUL to all of you for all your help. There is no doubt that the doctor was an idiot!  There is no doubt that more education has to be made in the clinical field.  There is no doubt that I need to learn anti-stress techniques and that these will trigger exactly what I went through.  I learned that first hand.
I almost feel back to normal.  Just taking it easy on my voice,, not over using it.  Still taking some 5 yr old naproxene for inflammation.  Still taking alchohol to wash it all down.. :)
But it is amazing how my thinking suddenly changed from being a fun loving girl to one who didn't care what was up and who didn't care who I was becoming.
Thank you for supporting me... xoxoxoxo
Just today, my boyfriend stood infront of me and told me we are in this together... that means so much to me too.  I know I am not out of the woods,, but I have  a smile on my face :) :)
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

CHD63

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Re: I need help - TODAY!
« Reply #20 on: March 13, 2010, 06:44:21 pm »
Yeah, Rhonda!  So glad you are feeling better today.  Now that you know some of your trigger points, hopefully you will be better able to control the episodes.  ..... and thank goodness you have a supportive boyfriend.  Not sure how those without supportive significant others face these trials.

Be careful about washing down painkillers with alcohol, though .....   :-[

Best thoughts and continuing prayers.

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

yardtick

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Re: I need help - TODAY!
« Reply #21 on: March 13, 2010, 10:15:30 pm »
Rhonda,

Do you not have a CD of your MRI to carry around with you?  I have all the CD's of my MRI's and when ever I travel I bring them with me.  Even if I am going down the QEW to visit family in Toronto the CD's are in my purse.  I am suggesting this because it would have saved the battle you had with the ER doctor. 

Unfortunately there are a lot of very rude doctors out there.  I was referred to a brain surgeon who is brilliant, but on the 2nd visit he got me confused with another patient because his Internet was down.  Yeah, that's the guy I want operating on my brain.  My luck I'd wake up from surgery like Jack Nicholson did in One Flow Over the Cuckoo Nest.   ;)

Happy to hear you are feeling better.  I can also relate to the stress issue!!! 
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

petgroomer

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Re: I need help - TODAY!
« Reply #22 on: March 13, 2010, 10:51:58 pm »
Hey Anne-Marie
Took some pics of my MRI on my black berry to the doc at the hospital.. he STILL did not believe it was me... duhhhhh... he literally thought I was a drug seeker...
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

sgerrard

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Re: I need help - TODAY!
« Reply #23 on: March 14, 2010, 12:52:38 am »
Hi Rhonda,

I'm glad to hear you are feeling a little better, anyway. It occurs to me that you might talk to Dr. Sinclair, and see if you can get a prescription set up in advance, just it case it happens again. This is sometimes done for radiation patients, for instance, so that if they have sudden severe swelling, they can get steroids quickly. After the fiasco at the ER you went through, Dr. Sinclair might agree to something like that.

Hope it stays in line for a while.

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.

petgroomer

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Re: I need help - TODAY!
« Reply #24 on: March 14, 2010, 05:44:34 am »
Thanks Steve,, GREAT IDEA!!! 
He's away all next week (at least his secretary said she is away all next week) not sure if that means him too.
I will call asap Monday.  It is amazing how much better I feel today, than I did for the past week.  It is crazy where my thoughts took me during that time.
Well, you all brought me through it... and once again, I want to say,, you're all life savers!  Only you guys understand what each one of us goes through, the pain associated with it and the despair of not having a cure.  I know I'd never be able to do it alone.
xoxoxo  Biggest Hugs Ever!
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

Denise S

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Re: I need help - TODAY!
« Reply #25 on: March 14, 2010, 09:47:14 am »
Wow, sorry I haven't been back on in 2 days since you were still at ER, but I would have to say "DITTO" to most of what others wrote.  I have to say my jaw dropped and tears came to my eyes in a sorrow for what you had to deal with.     I have had many of my own health issues over years and been through some crap, but that just sounded terrible!!   I have also learned to be my #1 advocate and never be afraid to call a doctors call line on a weekend, holiday, anything! 

You mention a  5 yr. old dose of Naproxene.   Isn't that sold over the counter there?   It has been here as a generic OR just Aleve at 220mg  taken 1 every 8-12 hours BUT, have been told if needed take 2...........for temporary time only & recommended to try 1, then an hour or so later if it isn't kicking in.     It is like many meds that used to be by prescription only, but now have came out in lower dose over the counter.       Have to say too you mentioned some anxiety med called Clonazepam.   Not familiar with it, but if it is for anxiety, so glad you had that & sure that is one of the biggest things that has helped you get through it.   Although, you mentioned the alcohol part with it and as Donnalynn said, not good idea due to it dehydrating.   Plus, alcohol is never recommended when taking any kinds of medinces.  (just a thought, and my own opinion)

I also have tears in my eyes reading your comments on your boyfriend.   Give him an extra big hug from a fellow forum member and tell him THANKS for being there. 

I am still wishing you the BEST and hope all goes MUCH, MUCH better with your upcoming visits!

Denise
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI