Update

[JeWeL41]

Hi all, following the 'no pathological enhancement after intravenous contrast' I have failed to get another neurologist to look at my mri but the radiographer has and says the large white enhanced area in my left ear is a 'dominant sigmoid sinus and jugular bulb'. She says that this is a variant of normal and will not be causing my issues. She could not explain why it enhanced so strongly on my deaf side and cannot be seen on my other side. She also said that as a radiographer she can't make a diagnosis. I'm still waiting for a consultant appointment but for now I will have to assume that the paediatric neuroradiologist and the radiographer are right. Take care

[lori67]

Hi Jewel -

I guess that's good news?  I know how frustrating it can be to know something is not quite right but not know why.  I hope it turns out to be something simple and easily fixed so that you'll be back to feeling well again.

Let us know what the other neurologist says.  I don't know anything about dominant sigmoid sinuses or jugular bulbs.  I guess we'll all find out, huh?

Good luck to you!
Lori

[Esperanza]

Hi J,

Well that is very interesting, sounds even more rare than an AN 

Seriously though, hope you don't have to wait too long for a consultant appointment.

How are your symptoms now - have they eased off a bit?  I have worked 3 shifts so far this week - an early and two lates AND a full study day -  and despite being absolutely knacked! I am still waking up at 3am and 6am - what's that about?!!!!

Take care

x

[JeWeL41]

still not great - left side headache ALL the time now. Tinnitus really loud. Feel really tired and off balance but not real dizziness. Also, weirdly I now have twitching and tingling on the right side of my tongue! I've had the disc copied and am going to post it to best specialist in US to have a look.

Anyone know who that is?

Esperenza, glad you are working and not suprisedyou are knackered, I'm just looking forward to the Easter hols! x

[ppearl214]

Jewel,

A lot of AN treatment specialists in the States will take a peek.... Dr. Clinton Medbery in OK (you can find him on the CK Patient Support board) will look for free... so will the docs at House Ear Insititute in LA.    Just 2 suggestions......I know you are having a tough time and until things are confirmed for you, please try to stay calm as we are here to help until someone figures out what is going on... we're here to help.

BTW, tix booked for the UK in December... confirmed. Will be based in Shaftesbury for the most part but should be in Central London during the timeframe. Will keep the UK gang informed of plans.

Phyl

[JeWeL41]

Shaftesbury is about 10 miles from me! We should definately meet up. Thanks for your support and suggestions, I'll get the discs in the post and see what happens.

[ppearl214]

Bournemouth!!?!  Wonderful! I would LOVE to see it (is there rail service between Salisbury and Bournemouth?)... or if you are 10 miles away... we will not be driving but... I'll buy you a wonderful pastry at Gold's Hill, home of the famous Hovis Bread statue from the tv adverts!   No worries, we have time to plan it.... would love to meet some of the UK gang!
Phyl

[JeWeL41]

Gods Hill! No worries, I have a car and it's only 20 minutes. I used to be in an Appalachian clog dance team and we often danced at the Gold Hill fayre.

I've sent my scan and medical note to my Aunt's sister-in law (they are both French), she is a Neuroradiologist in france so she is going to look at it for me. Posted today and should take 4 days to get there so by the end of the week I might have more info.

[ppearl214]

wow! Yeppers, that's the place. My in-laws are in walking distance to Gold's Hill.... maybe this pic/cafe will look familiar... at the top of the hill, facing down the hill.  My bloke (Iain) and I exchanged promise rings that day at the Abbey Walk.   Looking forward to meeting you!

Please keep us updated on what your Aunt's sister-in-law says... I'd be most curious..... glad she is there (well, in France) to help you! Please give her a big "merci" from me!
Phyl

[JeWeL41]

I've sat in the same place and drunk tea. It will be lovely to meet you 

[JeWeL41]

There is possible light at the end of the tunnel! I have posted on MedHelp and Dr Eric P Wilkinson from the House Ear Clinic in Los Angeles has replied to say he thinks that I may have a 'loop of the AICA (anterior inferior cerebellar artery) into the internal auditory canal', I've read that this can cause all of my symptoms and he has said this is worth a closer look and has recommended a specialist in the UK called Richard Ramsden in Manchester.

the pics are on www.frappr.com/jewel41

I feel quite optimistic about this and would be leaping about if it were'nt fro the vertigo.

[Nancy T]

Jewel, another term for that is "vascular loop."

I have a small vascular loop in my right ear, but it apparently is causing no symptoms. The neurologist who evaluated my dizziness and hearing loss was "hoping" to find a vascular loop on my LEFT side (my deaf side after a sudden hearing loss when I sneezed hard), as that could explain my symptoms, but it turned out to be on the wrong side!

Apparently many people have these vascular loops without their causing any problems at all.

I hope you soon get some definitive answers to your symptoms and MRI findings.

Nancy T.