I've just had a letter saying that my appointment with Linda Luxon is on 5th October. I know I should be going :bouncing: but I'm actually going :eek: because I'm absolutely *petrified* - of the train and tube journey there, of the tests she might have to do (I'm taking last year's caloric test results - she won't want me to have that done again, surely? Please say she won't?!) and most of all, I'm so, so scared of her saying there's nothing she can do and I'll feel like this for ever. It's come at a really bad time - my mum's been seriously ill in hospital for about 6 weeks so I'm stressed and exhausted by that and feeling ten times more spaced and dizzy as a result. I know some of you guys have already seen her - any words of wisdom? Is she nice? What tests did she do?

Ann

Ann: Yes, she is very nice .... but you may not see her, as when they run a clinic several different docs are taking histories, and making diagnosis', I had a few comunication problems (and so did a friend) with one of the doctors there, which made things tricky.

Unfortunately, they will want to repeat the tests, this is partly because the a lot of the ENG type tests are done on their rotation chair machine, which is more acurate and because they don't trust results from other labs (ENGs are very easily misinterpreted). The rotation chair tells them a lot more than most ENG machines would, so is far more informative. The caloric test (the air/water) is done by hand in separate room (well, it was i went). Sorry.. but I had to be honest..


They work the appointment out as follows. You discuss history and symptoms with a doctor, based on that they decide which tests to carry out, you then go and have various test, the results of each is passed back to the doctor who decides which test to do next. This took the whole morning in my case, then they review the test results with you and make a diagnosis (may be provisional) and decide what treatment you need, when I was there they booked my into a VRT session later that day so I didn't have to travel again, and book you for a followup appointment.

The various test they may do (I doubt they'd do all) are the rotation chair, which is yucky while it happens but ok after, various hearing tests (which aren't very symptom provoking), calorics, postography (stand you on a free moving platform, while moving the wall infront of you - it's a bit wobbly while it happens, but your fine after).

I know exactly what you mean about getting there, its a bit of a mission. I found the easiest way was to go on the train, then get straight into a taxi as they can drop you straight at the door, and you don't have to use the tube, and in all honesty they only charge a few pounds more (£9 I think). The first time I went I had to travel up from devon, for 9am appointment, and the first train didn't get in until 11, so I had to stay in a hotel the first night which I found pretty rough. The getting there and getting back is actually a bit easier going than thought, it's just a case of sitting there until you arrive.

I hope this helps

Thanks, Benny! It's good to be reassured that she's nice (definitely seeing her because it's a private appointment; my local health authority won't let me go on the NHS because 'there are ENT consultants in the area'...). She's told me to take my old ENG and caloric results and she'll use those if possible so I don't have to pay a fortune, but it sounds as if I'll need other stuff done as well because I've never had the rotary chair or posturography tests done.

The wobbly platform sounds, um, fun....!

Ann

Ann: Didn't realise you meant private, in which case I think you get to see her in person. Also, if the ENG shows any abnormality, then they probably won't bother with the other tests, because they will have probably found the cause, the rotary chair is very good at picking up minor deficits, and bilateral problems that the normal ENG will miss. They may still want to do hearing tests though..

I hope it all works out for you... and I'm sure you'll find the travelling easier than you thought..

Ann - I am also wanting to go and see this lady in london...let me know how it goes. It will be fine and the travel is worth it for a diagnosis!!!

CL.

Ann

I've just come back from seeing LL. Bit p'd off saw her privately and still waiting 3 weeks on for my results! Don't worry about the travel, I had to get on a plane, and train to get there! I avoided the underground this trip and took taxi's, its the best way, not expensive and less stressful all round. I had to stay a couple of nights, first night was pretty horrible actually, all symptoms back likely it was the plane and the tests were painless but its taken me about 10 days since coming back to feel more like my old self. The rotary test for me was the hardest but thats just because I'm afriad of hte dark! it makes you feel a bit yucky but I think its a good test. SHe didn't repeat the postography test for me, which was interesting, jsut did some hearing tests, some brain stem activity tests, eng, and the rotary chair. It's weird some people really like her, she barely said more than 30 words to me, so go figure! BTW depending on if you have insurance for this or if just paying yourself you have to pay up front for the tests or any VRT you might get referred to.. if you want more info give me a shout.. Sx

Thanks, littleone! Taxis sound like a good plan to me. Did she repeat your caloric tests? (I'm never suire whether calorics are part of ENG or not!). What did the brainstem activity test involve?

Ann

Meant to say ann - I am also having to go privately as my nhs trust also wont refer (i dont think- am still waiting). What a pain. Good luck xxx

Meant to say ann - I am also having to go privately as my nhs trust also wont refer (i dont think- am still waiting). What a pain.

I waited and waited to hear about mine, and gave up in the end! It's a nightmare, though - don't see how they can say an ENT is the same as a neuro-otologist. Ah well. I'll let you know how it goes! *gulp*

Ann :)

Ann

they basically attach electrodes to your head and put headphones on, in one ear you hear a rushing noise, the other like a drill, you have to lie in a darkened room. It's actually really ok, but you need to be relaxed as they are measuring your brain activity. It's not unpleasant, its the thought more than anything. The tests normally get done on a Friday afternoon, are you staying in London for the results? I've been waiting almost 3 weeks as I had to come back home. Seriously don't worry. A lot of us senior ones have had this **** for well over a year now, guess we are the special ones he he. One thing I can promise you, nothing bad will every happen to you, you'll feel crap yes, and dizzy dizzy dizzy but you won't pass out. I walked up and down oxford street to the hospital and boy was I dizzy but I did it. Also don't pin all your hopes on a magic pill to help... , it takes a lot of work with VRT to get this thing to go if it is a balance disorder you have. Dont' think hte worst, be positive, and know it can only get better!!

A lot of us senior ones have had this **** for well over a year now, guess we are the special ones he he.

I must be mega-special, then!! I've had it five years this time round, and six years the last time, with about a nine-month break in between. Seems to be a recurrent virus with me, as it affects my sinuses and throat as well as my inner ear. Joy. I'd love a magic pill, but I know it's unlikely to be that easy.

I'm not staying in London for the results - going on a Tuesday and I have to come home the same day, but they've been very sweet and arranged all the times to fit in with trains. It's going to be a hell of a day though!

Ann

oh god poor you, I must quit complaining :) Well keeping fingers crossed for you. Have they arranged to do the tests that day too or are you just having a consultation? Keep in touch and let us know what you're result is, I hope she can help you!!

Yep, they're doing it all in one day so I only have to do the journey once. I hopr she can help me too! (And you, and everyone else who has to go through this nightmare!).
Ann xx

Ann,

glad your going to see Prof LL, my GP has sent a referral in & am waiting for an appt. If the wait is to long am thinking about seeing her privately.
How did you go about getting a private appt? Did you need a referral from your GP or did you just ring her secretary?

Phil :wave:

Phil - I was cheeky and e-mailed Prof. Luxon myself begging her to see me, but then I had to get a referral letter from my GP. It took a couple of months to get the appointment, but her secretary told me today that that was just because they'd had trouble finding a day when I could have all the tests immediately after the consultation and still travel there and back (bless).
Ann

Ann,
That was a bloody quick reply, cheers. I spoke to her secretary today, she was meant to find out from patient booking when i'll get an appt (forgot to ask how long the wait will be)but she didn't ring back, i'll have to ring on monday. Hope your find the "magic pill". If i find it first i'll let you have it.

Phil :wave:

Ps what is her e-mail address? just in case. tks

Hi,

Can you tell me what the rotary chair test entails, please? Thanks.

Mick...

I rang the sec last week as I am to go private and the waiting list for private is a few weeks. Not v long. You dont need to email her at all - what you do is get ur GP to write to her at her private address (cant post it - sorry), fax it through and they will contact you. Emailing her wont quicken anything as they cant prioritise.

Good luck.

CL.

Mick - don't think I'm allowed to post her e-mail address (would it count as off-board contact information? I suspect so), but it's easy enough to find on Google, and all she'll say is to get your GP to write a referral letter anyway. Her secretary seems lovely (I spoke to her today as well!) so ring her back on Monday and see what she says. Good luck! :)

Ann

Little One said: they basically attach electrodes to your head and put headphones on thats the auditory evoke potentials test not the ENG, it is usefull for detecting certain rare conditions (AN).

Wooowwwee: The Rotary chair test is different from the calorics, it measures nystagmus (like traditional ENGs), and in some labs (like the one in london) they also do the optokinetic tests (bouncing lights) from inside the rotation chair booth. Your eye movements are measured by electrodes attached to your head, you sit in the chair, once the optokinetic tests are finished, then they rotate the chair (fairly slow) in each direction, firstly with a light following you around, then with the light still, then they close a curtain around you (covered in stripes) and rotate you again, then the rotate you and the curtain in the opposite directions (yuck!!). This test is pretty much the gold standard, but can't differentiate between which ears is give the duff signals (because by rotating you both ears are stimulated at once, in the caloric each eat is stimilated separatly by water), this can give lots of information about directional propondance, gaze fixation on movement and picks up bilaterial weakness, or interpretational (ie central problems) weakness. It also gives some indication of how the compensation process is going (because if someones fully compensated then certain readings come out normal as your brains compensating for your weakness). Apparently it's very good at picking up subtle abnormalites (such as those in migraine and mild menieres)...

Wheeeee! That sounds fun (not!), but the 'fairly slow' but has cheered me up no end. I had visions of being whizzed around really fast....

Thanks, Benny!
Ann

Ann and you guys.

I have an appt. to see the Prof or one the team on the 28th
this month. Quite surprised I got an appt so soon. I will tell you guys what happens.

Take care Phil :wave:

Excellent - thanks Phil! You can tell me how easy and fun it is so I'm not scared on the 5th, and tell her she has to be extra nice to me because I'm sh*tting myself!

Ann

Ann, seriousy its no big deal, the thought is always worse than the actual tests and you know what you get a result at the end so thats pretty good. Don't panic and remember everyone is different so you may not have to get some of these done.

Hope it goes ok ann...it'll be fine...glad u signed the book btw.

CL.

can anyone reveal a general break down of cost to investigate a balance problem with dr luxon.including tests etc
also i believe my balance problem eminates from discomfort in my neck.is this prof. luxon's feild?
ive been reffered to a local ENT.should i do the standard tests through him/her first before seeing dr luxon?

Patrick: You can see Prof Luxon (or one of her team) on the NHS, but you'll need a referal. She runs the neurOTOlogy dept at the national hospital for neuroscience and neurosurgery. Neurotology is the specialism where they look at the inner ear, (vestibular and auditory) and it's connections to the brain, and the brains responses to those senses. However, while a neck problem can provoke an underlying vestibular problem and cause vertigo, it isn't commonly the root cause of vertigo (but it can cause lightheadedness and balance problems).

Wheeeee! That sounds fun (not!)

Ann


I guess I'm in one of those moods - that comment made me laugh out loud!

Patrick, I pais 155quid for a caloric test at a hosp in central london, they told me it would be £355? for the other tests, if you need an mri it could cost anything upto a 1000 pound depending which hosp does it.

I don't know where you live but you need a referral from your GP (private or nhs) but do anything you can to get to the national. Phil

cheers people.
how much is the initial consultation?

no idea, I've never received a cost. I got mine through private insurance referral, and she never took any info of me so not sure how it works! Not everyone gets the same tests, depends upon symptoms and what she wants to look for. I'd budget between £500 to £700, for the tests, not sure how much an MRI would cost. I had that done locally at home and took the xray down to London with me.

patrick - the initial cnsultattion costs between 200-250 with LL. Cost me 250.

CL.

cheers labrynth

cheers people.
how much is the initial consultation?

When I initially approached her she told me £200, but when I got my cheque book out on Tuesday she flapped her hands at me and said not to worry and that she'd send me a bill, so I hope I'm not in for a horrible shock! The tests were just over £600; they should have been more, but one of the machines was playing up so we got a £155 refund. Everyone has differnt combinations of tests, though - I had hearing and pressure tests, calorics, rotary chair (ugh) and ENG, posturography, brainstem evoked potential (nice lie down for 20 minutes!), and was down for one other hearing thing that they couldn't finish. Still jumping every time the phone rings in case it's my results!

Ann