Author Topic: Kinda important  (Read 2769 times)

gabberdoo

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Kinda important
« on: September 18, 2011, 10:15:49 pm »
I just called the doc on call for my GP. My symptoms are worsening...and now my eye is twitiching. I told him I have unrelenting headaches, nausea, horrible balance and now the eye twitching. He said the headache is unrelated and just wait to call my regular doc. Is there such a thing as a medical emergency with an NA. The issue too is that I've not yet seen a Neurosurgeon, so the diagnosis is simply based on the MRI. I'm so lost.

alabamajane

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Re: Kinda important
« Reply #1 on: September 19, 2011, 08:21:55 am »
Morning,, and I hope you have been able to get a call into your Dr by now.. I am not a Dr, but have been dealing with my AN for  three years now.. I have been just waiting and scanning mine all this time but my symptoms have worsened in the last year also so I am transitioning into surgery.. I have not read or heard of an emergency situation with these tumors as they are usually slow growing however, symptoms do seem to 'come and go" sometimes. . it is pretty obvious to me that whoever the on call Dr was that you talked to does not have any experience with these tumors/and symptoms.. as headaches are quite often reported by people on the forum. I have very sever headaches most of the time,, not always really bad,, but usually present.. balance issues and focusing issues will also influence headaches.. nausea usually comes hand in hand with the balance issues..
there are free booklets from ANA that you can get that will give you very good info about ANs and the symptoms/ issues involved. Once you see a neurotologist ,, you will get much more info about your situation I believe.. not even sure most GPs know about these things.. you may need to start with an ENT Dr... good luck and just do as much research as you can and read these posts as all of us here are going through the same things/emotions you are,, I still feel very lost and scared most of the time,, it is a VERY daunting and overwhelming "place" you have found yourself,, but you are not alone,, we are all here to help you get through this and you will,, with a little time and discussions with Dr that "know" something about these tumors,, you will feel more at ease... you can even send your MRI to several different Dr across the country who will look at it and discuss your situation with you over the phone,, One that I used is House Clinic,, or House EAr Institute in Los Angeles (HEI.com, I believe) .. they are very good Dr out there as many people on this forum will attest,, and they will discuss your situation with you "with no obligation" to go out there,, I found Dr Slattery to be very informative and a great source of knowledge and reassurance for me in my decision making,, check it out,, I think you will be comforted by their advice..
I wish you  the best in your decisions and just know that you are not alone in this,, but your symptoms are not "all in your head"",,,,,,,,,,,,,,,,,, and most will be related to this new "path you find yourself on"....................
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

gabberdoo

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Re: Kinda important
« Reply #2 on: September 19, 2011, 01:41:51 pm »
Thank you Alabamajane. You're right, GPs have no clue... and in this somewhat small town, resouces are even fewer! Thanks for the info.

Jim Scott

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Re: Kinda important
« Reply #3 on: September 19, 2011, 03:20:56 pm »
Hi, Debbi ~

I hope you're feeling better by now.  Obviously, your GP's fill-in doctor was mistaken.  As Jane stated, headaches are a very common symptom with acoustic neuroma. Don't rush but once you've settled on a neurosurgeon, try to get a surgery date asap.  Your symptoms won't likely improve in the meantime and the bigger the AN gets, the more problematical removing it can be, so do not hesitate to move toward a surgery date once you're feeling confident about the doctor who will perform the surgery.  You know that we wish you a great outcome.

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.

 


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