ANA Discussion Forum
General Category => AN Issues => Topic started by: JeWeL41 on February 16, 2008, 01:34:13 pm
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Hi all,
I am still waiting to see the consultant in London in spite of being an 'urgent' referral. I am really worried as I've had my symptoms for a long time and they are getting worse, particularly the imbalance and tinnitus. I actually had my first mri in 2004 for mild unilateral hearing loss and then went on to have sudden deafness in the same ear in November 2006. I wear a hearing aid now. I had this non-contrast mri done the month after my sudden deafness in december 2006 and as far as I am aware it has only been looked at by one non-specialised radiologist. My diagnosis is SSHL but I have every symptom of AN - initial mild unilateral hearing loss, labrinthitis x 2, sudden hearing loss with very loud tinnitus, ear fullness, strange facial sensations and now twitching, left sided headaches and tightness of scalp on that side etc
I do appreciate that members are layman and not medics but you are all very knowledgable. I have posted some of my mri pictures on my Frappr at the link below. I would be really grateful to anyone who would have a look and give me any thoughts?
Thank J :-\
http://www.frappr.com/?a=myphotos&type=photos
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Here is a better link, the one you posted doesn't show anything. I found this by searching for jeWel41:
http://www.frappr.com/?a=myphotos&id=4872740
It's really hard to say, given that you don't have all the pics, and they are without contrast. It is tempting to latch onto to the first bright blob you spot on the right side of a picture (the left side of your head). But without contrast, the AN is not expected to light up, so that can be misleading.
Also the MRI's are not shot at perfect right angles, so the two sides often look different. When the pics are on a CD, you can scroll forwards and backwards through the head, and see that a blob on one side shows up on the other side two frames later. There are a couple of shots with quite normal looking IACs (the canal where the AN typically starts), but again, two frames higher or lower might show something different.
So I will give you a definite maybe, maybe not. :-\
A doctor telling you that you have SSHL doesn't say much - if you wake up deaf one day, you pretty much already know that you have had sudden hearing loss. I hope you get your London appointment, and get to the bottom of this soon.
Steve
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Thanks Steve, I do have the CD I just picked these out because they show the right area I think. I didn't know that you wouldn't expect bright blobs without contrast so thank you for that. I know I'm clutching at straws because I am worried and impatient for this new appointment.
As to the SSHL diagnosis - yes, not really a revelation!! :)
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Wish I could help... I can see mine clearly on my MRI but only on the contrasted ones....
Really nice to see what you look like too!!
Have pm'd you.
x
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I have to agree... granted, I'm not an MRI tech or radiologist....... best to have read by those trained in the field.....
But, continued wishes for wellness and hope it all works out.
Phyl
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I do appreciate what you are all saying and I know that I really need a contrast scan.
Incidentally, I have just read that on T1 and T2 weighted scans shwannomas may appear bright!
Also, just curious, how many pictures are taken in a normal scan? I had 132 altogether, from one view there were 64, another 3 views had 19 pictures and the last view only 11 so they must have been really quite thick slices as they clearly go right through my head so this can't be very precise either can it?
:o
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Hello Jewel,
I agree with Esperanza. Always neat to see a face with a name. :D
My wife had SSHL in May of 2007. From May till November she had three hearing tests. Only the third examiner (who we are eternally grateful) suggested she see an ENT. I guess because AN is so rare even the ENT thought her symptoms presented something other than AN. My wife recently (February 6) had an MRI with contrast and the scan returned 218 pictures. As the doctor reviewed the scan he showed the MRI photos without contrast and pointed out the nerves going from the brain through the ICC towards the ear. On one side you can clearly see two bright lines about an inch long. On the side with the tumor there is only one line. The doctor outlined the tumor which he saw right away. We barely could make out the tumors darker grey. The doctor then went to the scan with the contrast agent (cadlinium?). The tumor showed up brightly. I was amazed at the difference.
I sincerely hope you have your consultation soon. If you don't agree with their evaualuation please get another opinion. It's apparent by your comments you have researched the symtoms of AN.
Safety & blue skies,
DJ
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Thanks diverjeff for your response.
I should say that I've had no trouble seeing ENTs - I've seen 3 locally and was even admitted to hospital by one of them when it happened but only because I took myself down to A&E after being fobbed off by my GP as I read that SSHL was a medical emergency. Three months later I saw Prof Wright in London who is supposed to be the leading expert on SSHL in the UK but he didn't re-examine me or look at my scan, he just re-read the notes from the local ENT to me.
Thank you for your description of your wife's scan, it doesn't sound like mine which is good. I wish you both well