Author Topic: Please, please help?  (Read 12342 times)

JeWeL41

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Re: Please, please help?
« Reply #15 on: February 28, 2008, 03:53:48 pm »
It has been read and reported by a Neuroradiologist but i have not spoken to him or anyone this is the WHOLE report...

'No focal intraparenchymal mass lesion identified. The brain appears structurally normal. An Acoustic Shwannoma has been excluded. No other cerebello-potine angle lesion demonstrated. The mastoid air cells and middle ear clefts appear normally aerated bilaterally. No skull base abnormality identified. There is no pathological enhancement following intravenous contrast.'
Sudden hearing loss Nov 2006 (left), tinnitus, fullness,imbalance, left side headaches and strange sensation on that side of face - but not AN!
Diagnosis - SSHL. Bouts of spinning vertigo now!
Saw Prof Ramsden (April 08) and it may be Atypical Menieres with Migraine Syndrome!

ppearl214

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Re: Please, please help?
« Reply #16 on: February 28, 2008, 03:56:57 pm »
My initial response... YAY!!! NO AN!!!!!!!!!!!!!!!!!!!

I am also a firm believer in 2nd opinions... but this report sounds pretty definative and a neuroradiolist read...... I'm betting no AN...

we want you healthy. I know you need to conquer the issues that are affecting you... but when I saw your MRI.. and based on this report... FWIW.... my op.... no AN... that is fab news! :)

Waves of healthy wishes to you,
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

JeWeL41

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Re: Please, please help?
« Reply #17 on: February 28, 2008, 04:10:33 pm »
Thanks Phyl I am feeling more reassured by the minute but why didn't he say what the bright area is? I want an answer and I would love it to be something along the lines of ...scar tissue due to viral infection then I could marry this with the hearing loss etc but for him not to even mention it is soooo frustrating. If the scan had enhanced the same on both sides I wouldn't still be worrying but it didn't.

Hopefully I will get to speak to him soon so he can tell me what that area actually is. If not I will pay a neuroradiologist to sit down with me and go through the scan...that just doesn't happen in the UK .A patient is not a person just a statistic on a conveyor belt.
Sudden hearing loss Nov 2006 (left), tinnitus, fullness,imbalance, left side headaches and strange sensation on that side of face - but not AN!
Diagnosis - SSHL. Bouts of spinning vertigo now!
Saw Prof Ramsden (April 08) and it may be Atypical Menieres with Migraine Syndrome!

ppearl214

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Re: Please, please help?
« Reply #18 on: February 28, 2008, 05:07:58 pm »
booking our tix now for the UK.. .heck, I'll come read your films! :)

Hang tough!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

JeWeL41

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Re: Please, please help?
« Reply #19 on: February 28, 2008, 05:13:57 pm »
Phyl - you are a wonderful person x
Sudden hearing loss Nov 2006 (left), tinnitus, fullness,imbalance, left side headaches and strange sensation on that side of face - but not AN!
Diagnosis - SSHL. Bouts of spinning vertigo now!
Saw Prof Ramsden (April 08) and it may be Atypical Menieres with Migraine Syndrome!

ppearl214

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Re: Please, please help?
« Reply #20 on: February 28, 2008, 05:19:11 pm »
nah, I'm just me!

Cheers hun! :) Save me some Jaffa Cakes, Cadbury Fruit/Nut and save me a slice of Mince pie! :) 

Phyl and her cheeky bloke! :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

JeWeL41

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Re: Please, please help?
« Reply #21 on: February 28, 2008, 05:22:30 pm »
yummy!!! Well it's late here (11.22.p.m.) so goodnight and God bless, I think I'll sleep better tonight  :D
Sudden hearing loss Nov 2006 (left), tinnitus, fullness,imbalance, left side headaches and strange sensation on that side of face - but not AN!
Diagnosis - SSHL. Bouts of spinning vertigo now!
Saw Prof Ramsden (April 08) and it may be Atypical Menieres with Migraine Syndrome!

ppearl214

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Re: Please, please help?
« Reply #22 on: February 28, 2008, 05:23:51 pm »
night JeWeL... and be well.... sleep peacefully now....

(bugger, forgot to give her address so I can get my Cadbury!) ;)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

sgerrard

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Re: Please, please help?
« Reply #23 on: February 28, 2008, 11:56:44 pm »
Jewel,

Congrats on not having an AN. You might like to hear a few phrases from the radiologist report on my MRI (from a well respected radiologist), regarding things other than the AN:

"There are one or two focal areas of white matter hyperintensity involving the subcortical and deep white matter of the cerebral hemispheres bilaterally.  There
is an area of high signal within the white matter of the external capsule on the right."

Leading to the following conclusion:

"2. Minimal nonspecific white matter changes."

There is bound to be some of this sort of thing on any MRI. It takes training and practice to recognize the meaningful stuff. There is quite an effort, for instance, to find ways to reduce high signals in MRIs from fat deposits. You may just have some marbling. :)

I don't think you have exhausted the medical books just yet. Meniere's Disease, maybe? I just met someone with that, it has some similar symptoms, and shows nothing on an MRI. Or something else that might explain the balance issue, if not all the symptoms. There is bound to be some medication or treatment that will at least provide some relief, it will just take some patience and perseverance to find it.

Best wishes,

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.

JeWeL41

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Re: Please, please help?
« Reply #24 on: February 29, 2008, 01:26:31 am »
Menieres has been ruled out apparently but I don't know why.

I do hear what you are saying about the high signal areas but on my scan there is only one large high signal area through several slices in the inner audiditory canal on the left (correct) side just below the auditory nerves. There are no other areas of high signal and it has not been commented on. While it's not an AN it must surely be what was responsible for my Sudden Hearing Loss and the other symptoms - I just want to know what it is and the radiologist should have known that. However, he was only looking for AN and there wasn't one so no need for any more detail!!!!
Sudden hearing loss Nov 2006 (left), tinnitus, fullness,imbalance, left side headaches and strange sensation on that side of face - but not AN!
Diagnosis - SSHL. Bouts of spinning vertigo now!
Saw Prof Ramsden (April 08) and it may be Atypical Menieres with Migraine Syndrome!

HeadCase2

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Re: Please, please help?
« Reply #25 on: February 29, 2008, 08:00:49 am »
Jewel41,
  Congrates on not having an AN.  We can all attest that you really don't want one  :).  Keep trying to find out what may be causing your symptoms.  We can also attest that it can sometimes take some time to have a rare condition properly diagnosed.  AN is often misdiagnosed for years or decades.  Here's hoping that your symptoms go away soon.  Or you at least find out the cause.
  And thanks for being a science teacher  :-*  I get a kick out of sparking children's imaginations with science, whenever I get the chance.
Regards,
  Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

Esperanza

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Re: Please, please help?
« Reply #26 on: February 29, 2008, 12:01:02 pm »
Phyl, as nice as Cadbury chocolate is we really are spoilt for choice on lovely choccie over here now!

J, again hope you don't have to wait too long for the specialist appt. or to speak to the Radio. person.  Also, how did you get your MRI images off the disc - can't figure it out!
Thanks,

x
« Last Edit: February 29, 2008, 12:05:40 pm by Esperanza »
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

ppearl214

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Re: Please, please help?
« Reply #27 on: February 29, 2008, 12:49:44 pm »
Phyl, as nice as Cadbury chocolate is we really are spoilt for choice on lovely choccie over here now!
Oh, trust me... I'll take the Thorntons as well! :)  Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

JeWeL41

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Re: Please, please help?
« Reply #28 on: February 29, 2008, 03:14:44 pm »
Phyl, pm me your address and choccies may follow x

Esperenza, I opened the image and then was able to click file and save as. On the last set of scans the programme was dfferent and I could just right click on the image and then copy and paste - trial and error is the key. Older teenage kids are useful too!

The imaging centre called this morning and have said that the neuroradiologist does not speak to patients as he is too busy with court cases! (he is a paediatric neuroradiologist and does a lot of baby-shaking cases!)but a more specialised neuoradiologist will review my scan again next thursday and will try to explain the bright area. I've also found an old school friend is a radiologist (but not neuro) and she's going to have a look too.

Tinnitus, ache and 'golf ball' in my ear driving me bonkers today, but at least it's friday.
Sudden hearing loss Nov 2006 (left), tinnitus, fullness,imbalance, left side headaches and strange sensation on that side of face - but not AN!
Diagnosis - SSHL. Bouts of spinning vertigo now!
Saw Prof Ramsden (April 08) and it may be Atypical Menieres with Migraine Syndrome!

Jim Scott

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Re: Please, please help?
« Reply #29 on: February 29, 2008, 03:41:14 pm »
Jewel:

Slightly belated congratulations regarding the absence of an acoustic neuroma being evident on your MRI scan.  I'm almost as curious as you are to learn what the 'bright area'(on the MRI scan) represents. 

I'm truly sorry you're still suffering from AN-like symptoms.  I trust that you'll soon find a physician who will be able to locate the real source and find a way to address it, so that you can be relieved of the tinnitus, aches and pains that bedevil you, which may actually be ear-related, and thus, quite treatable. 

We appreciate your updates...keep them coming.   :)

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.