Author Topic: I need help - TODAY!  (Read 10095 times)

petgroomer

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I need help - TODAY!
« on: March 12, 2010, 06:34:23 am »
Hi all...
My condition has gone from bad to worse over the last 3 days.  I am asking what you all have used for pain management.
The pain in my head and neck has gone from VERY painful to.. just PAIN.  Feels like a terrible bout of strep throat with every swallow, every turn of my neck, every clearing of my throat, and there is constant throbbing on the one side from my jaw to my ear.
I am not sure how things have gone so quickly from bad to unbelievably worse.  But I need help.  Knowing I am in a rural area up in Canada that has NO IDEA even what a schwannoma is,, I'm in for a treat when I go to emergency to try and get a med to relieve this. 
Should I be looking at anti inflammatorys?  Should I be looking at pain medications? 
Which ones should I be asking them about....
I am on my way now,,, takes 50 mins to drive to the hospital... if you can message this back, i'll keep my black berry open and read ANY help or advice...

My symptoms are,
-can't quite get my throat cleared,
-constant and severe neck and ear throbbing on the one side,
-if I swallow there is terrible pain from my throat up through my jaw and to my ear on the one side.
-a nagging sort cough that won't go away.

Please, let this be a cold or actually be strep thorat, but a year ago i was in emerg with the same things and they didnt find anything then.  i didnt know i had a tumour than.
Thanks in advance  xo
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

sues1953

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Re: I need help - TODAY!
« Reply #1 on: March 12, 2010, 07:13:19 am »
OMG!

I am so sorry this is happening to you.  I will send prayers your way this AM.  I hope this is the onset of a bad cold. Good Luck.  Please let us know what you learn at the hospital.

Sue in Michigan
3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

sunfish

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Re: I need help - TODAY!
« Reply #2 on: March 12, 2010, 07:14:09 am »
What you need will depend on what they find - I'm so glad you're heading to get help, such as it may be.  I'll think of you this morning, and will pray that the doctors can give you some sort of definitive answer.  Let us know how it goes.
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

CHD63

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Re: I need help - TODAY!
« Reply #3 on: March 12, 2010, 07:17:47 am »
Rhonda .....

Wish I could wave a magic wand and make your pain go away ..... bummer!  You are on the right track to get to a doctor and have it checked out.  Until you can rule out strep or a viral cause, you won't know what is the best avenue to take.

I did not have severe pain ever like you are describing.  Shortly after I was diagnosed, but before surgery, I developed pain in my ear.  I was terrified they would have to postpone the surgery.  My ENT prescribed cortisone drops for my ear and it cleared it up ..... whatever it was (nothing was visible on exam).

If this is beyond Tylenol control (and if it is not strep or a virus), you need to check with the physician most recently in charge of your schwannoma.  An ear infection is always a possibility, as well.  With pain this severe, you need to get to the cause, not just manage the pain ..... but you already know that.

Best thoughts and 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

mk

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Re: I need help - TODAY!
« Reply #4 on: March 12, 2010, 08:27:04 am »
Rhonda,

have you tried ibuprofen? I have found that taking 400 mgs of ibuprofen helps enormously whenever I have discomfort - it is an antiinflammatory too. Even a minor cold/sore throat can cause severe symptoms, because it results in additional swelling/irritation. I have found that I am much more sensitive to head colds, sinuses and allergies and I am pretty sure it is because of the additional irritation, on top of the AN. Also my tonsils on the AN side seem to be more sensitive. Fortunately these kinds of symptoms subside when I get  better.
If your symptoms do not subside, of course you have to discount the possibility of extra growth too that might be causing these problems. Steroids can help too in case of swelling related symptoms. You are in good hands now with Dr. Sinclair, so I think you should contact him and ask his opinion.

I hope you will feel better soon.

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.

Lizard

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Re: I need help - TODAY!
« Reply #5 on: March 12, 2010, 08:38:26 am »
That almost sounds like it might be trimengeal pain.  Look into it!  If you can convince someone what you think you might have then you have a better shot at being treated.  Have you had a recent MRI?  I would request one if not.
Good luck with getting better, hopefully its all just a cold.

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

sgerrard

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Re: I need help - TODAY!
« Reply #6 on: March 12, 2010, 09:57:08 am »
I would try any kind of anti-inflammatory, especially a prescription steroid. It sounds like the bugger is flaring up. For the pain itself, it may take something pretty strong to knock it down, especially if it is the trigeminal nerve. Like in the controlled substance category.

Surely hope you can get something to bring it down a notch or two.

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.

Denise S

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Re: I need help - TODAY!
« Reply #7 on: March 12, 2010, 11:09:38 am »
More than likely you are already at the hospital, but I would have said the same as Donnalynn, steroid???    Sounds like lots of swelling.  The issue would be what might be causing it though, SO VERY GLAD to read you were going to ER.  Sure they will check blood, etc. for infection and possibly CT or something.

So you are W & W status?   (sorry I will check out one of the posts in your signature)

Best wishes and hope you got some answers and relief!
Denise

Rhonda, I am now modifying this after reading much of your posts.   I have to say how much it must really stink how excited you were just 3 days ago to FINALLY find someone a bit closer, and now while waiting a month for more tests, etc.  this had to come on.    I am so sorry it has been such a LONG and crazy journey for you!!       

I have to say I honestly know nothing about Canada and how things are available, etc. up there, but this forum has for sure been interesting in regards to some of that.

You mention geographical tongue and of course that was a bit odd for me.   BOTH my boys had that when they were toddlers (no known reasons).   They are now 11 1/2 and other 10 in a couple weeks.   They haven't had that in years.   Just weird how our bodies are.

Will be thinking of you & prayer all day!
« Last Edit: March 12, 2010, 12:01:08 pm by Denise S »
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

tenai98

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Re: I need help - TODAY!
« Reply #8 on: March 12, 2010, 11:48:02 am »
Oh Rhonda
I'm sorry to hear this. And I know how the wait is in the ER in Ontario...4-5hrs??  My last wait time was 7 hrs...ouch..
lPlease keep us informed.
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 #9 on: March 12, 2010, 02:00:17 pm »
I am so at my wits end!!!  Sat there and had a doctor tell me that my tumour is in no way responsible for the pain I am experiencing.  He also told me to drink a sip of water.  Upon doing so, he said that my swallowing is doing fine so what's my problem?  He also did not beleive that I had a tumour and called upon the records from Toronto Princess Maragaret and once he read them, he asked why they cannot operate.  I told him it is too big.  He asked why then am I seeking another doctor.  I told him that he can do C.K. and that is what would help my situation.  He said that there will be complications with that and cannot understand why I would think about doing that.
He asked why in the world am I there at the hospital.  I told him I cannot go an entire weekend in such pain.  He said he was NOT going to subscribe narcotics for pain, NOR any antiinflammatorys.  Rather, go home and suck it up.
He actually treated me as if I was a drug seeker looking for my next fix.  When in fact, I had not had any trylonols prescribed to me since 2005.  So whatever! 
I am so angry and disheartened and frusterated.  My boyfriend actually called the hospital to complain about the treatment they gave me.  They are going to do follow up on that.  In the mean time, I have double dosed my clonazepam for anxiety and double dosed aleve naproxene for inflammation.  On my way to bed obviously.  Pretty bad that one has to over drug themselves to gain relief from an otherwise miserable painful existance. 
I am only hoping this is all temporary.    10-4  good buddy  xo
Oh , did i mention the ceasar drink to wash it all down?  I admeit it, all's I can think about is over drugging and drinking to kill the pain.  Never thought I would ever turn to this.  I am not looking for sympathy,, I am only looking for others who have been so closed into a corner, that this has been your only hope too.
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

tenai98

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Re: I need help - TODAY!
« Reply #10 on: March 12, 2010, 02:16:57 pm »
did you try calling Dr. Sinclair in Ottawa? Surely he can help????  He also could send a script to your drugstore??
Hope you feel better upoin waking.
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

Jim Scott

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Re: I need help - TODAY!
« Reply #11 on: March 12, 2010, 02:17:34 pm »
Rhonda ~

Considering your situation, I'm not sure when you'll be up to reading this but your horrible experience at the hospital was not only downright inhumane but should be illegal.  That arrogant doctor is an incompetent idiot and could be the poster boy for physician insensitivity.  One look at your medical records should show him that you're not 'a druggie looking for a fix'  but that would require some intelligence on his part, which the man obviously does not have.  Although I'm very skeptical about 'socialized medicine' I'm not at all sure your country's health care system is the culprit here.  More likely just a bored, incompetent doctor with a very cynical attitude, too lazy to perform due diligence.  We have those too (in the U.S.) and I fear they will tend to increase should our health care system end up being essentially government-run, but that's another subject for another thread.   

I can only hope that your headache has subsided by the time you get around to reading this and that you'll never have such an experience with a doctor, again.

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.

CHD63

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Re: I need help - TODAY!
« Reply #12 on: March 12, 2010, 02:45:49 pm »
Rhonda .....

All I can say is WOW, what made that doctor go into medicine as his chosen career???  You know that we know you are not a drug seeker.  JO had a good suggestion to call Dr. Sinclair in Ottawa ..... you have nothing to lose.

I hope and pray that you will soon have relief, through treatment of some kind, albeit it radiation, surgery, or medication.  This has gone on long enough!!

Many thoughts and 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

Mickey

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Re: I need help - TODAY!
« Reply #13 on: March 12, 2010, 03:49:11 pm »
Hi Petgroomer! I`m so sorry to hear of all the problems your facing. There has to be some doctor who will take a better stance on helping you. Keep doing the best you can and hopefully you will hit the right combonation which will help you. Many prayers for you along the way, Mickey

petgroomer

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Re: I need help - TODAY!
« Reply #14 on: March 12, 2010, 06:13:46 pm »
Hey all,
Up from my nap.  I had a chance to re-read all the posts and my own posts.
I did infact call Dr. Sinclairs office yesterday and talked to his secretary who told me to try an emergency near my home (thier office is closed today and all of next week) and the emergency can rule out strep and ear infection.  Then the emergency will probrably prescribe something that will alleviate the pain and reduce swelling.
Well.. they did rule out the infections, but then he looked at me and insinuated I was there for drugs alone with no symptoms.  I cannot actually show him pain.  He didn't believe me about the tumour and called Princess Margaret to get my records then came in and said, that my tumour on my 10th nerve is in NO WAY causing the pressure and pain that I am saying I am having.  He just thinks it's in my head OR that I am seeking prescriptions.
Thank you all for your support.  Without you all, I would feel very alone and actually a little insane.
I just want to be back to that fun, not a care in the world girl I used to be, even with a tumour I was still ok with everything..... but with this new found pain and pressure, I'm afraid of who and what I am becoming.   ???
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