I've just had a letter saying that my appointment with Linda Luxon is on 5th October. I know I should be going but I'm actually going 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?
Last edited by dogologist; 09-16-2004 at 05:44 AM.
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.
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.
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..
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
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*
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!
Last edited by dogologist; 09-17-2004 at 06:52 AM.
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!!
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 - 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).