At last a consultant with sense a MRI with contrast!!

[uk2]

Hi All

Went to my ENT appointmemnt the one that has been canceled once by me and once by him lol and finaly 2 years later i get back to see him with all the eventful pass of my vertigo spells and the ringing in my ears getting louder in bouts the sickness and movement and unbalance i have felt for nearly 2 yrs now, he was shocked to see me in a wheelchair as had not seen me since i had benn dx in 2008 jan with fibro and questioned how i had got so bad he then looked at my old CT scan and my old MRI the neuro had done both back in 2007 and realised that the MRI had never been done with contrst he asked why? was it because of an allergy? i said no so he insisited on a MRI with contrast of the brain and too include the inner just in case we are missing something with the inner ear, he had thought it might have been menirers disease but as i was put on serc for this a medicine best for menieres and it had not worked he said he thinks its not the inner ear, he laughed when i told him what the A&E dr gave me and how tied i was he said you should never mix that drug with the narcotics i am on and no wonder i slept lol

I have to see him again in 8 weeks by then i would have had MRI (5-6 week wait unless cancelation comes up) then balance test on the 31 st march and if he still not happy with results then he will send me to a special testing centre in cambridge to investigate further why this is happening.

He urged me to go back to my neuro i said i was going to see one up at st georges, he agreed that fibro is not a degenarative disorder and cant understand why i have gottne so worse, he was disgusted that i had had no follow up or never had contrast in the begining he was the nicest consulatant i had ever seen i remember him being so nice last time.

I was shocked that the xray had showed inpacted sinuses but the CT scan said they were all clear nothing there, i explained about the running i get at the back of my sinus and that i use a steroid spray but he still felt it was not menire's disease but something central but wants the balance test and MRI to come back first.

More waiting but its a real answer to pray for one an MRI with contrast hardly ever done on the NHS and also no menirers at this point so i can drive as it says if you are dx with menires disease you have to tell the people who give you your licenece and cant drive for a year and i've just orderd a mobilty car so i pick that up friday so i can drive again been a year its been specially adapted so i can. Was worried about this when earlier in the year the dr had thought i had menires disease but i went ahead in faith and ordered it anyway as i needed my independance back.

sam

[uk2]

Thanks

I cant understand how they tell the difference if the test all come back clear or inconclusive is is going to send me to a special balance disorder centre where they will conduct more test to find what is going on.

sam

[Quixotic1]

Hi, guys,

The caloric test (the warm and cold water in the ears) is more complex than that.  The results are interpreted by looking at factors such as which direction the nystagmus bests in, how long the delay is between the introduction of the water and the onset of nystagmus, and how long it takes to recover.  Normal people WILL have nystagmus.  Abnormal people will show some variation in timing or direction.  That is how they can tell peripheral and which side or central and which side.

I was never able to completely understand it, so we have to depend on the interpretation of the experts.  That's why I recommend going to an neuro-otologist.

Definition - nystagmus is the rapid beating of the eyes in response to a vestibular stimulation.  There is a slow component to one direction and a rapid "beat" or return in the opposite direction.  Nystagmus can be horizontal, vertical, rotatory, or pendular (a swinging back and forth), or searching (irregular and all over).

Quix

[uk2]

I was told that the inner ear can cause the nystigma but then so can central so am not sure but the A&E dr told me i did not have fluid in my inner ear and my CT scan was clear so he feels its central but wants the MRI to confirm but also was not pleased that my last MRI was without contrast, but as its an ENT i doubt a MS critia will be run on it, he wants the inner ear included just in case they are missing something.

Sorry i cant answer your question but if you goole the balance test eng or just google inner ear and balance test and it tells you on there.

I know when i went to the A&E about my vertigo he did the halpike test when you sit up and then he lowers you and turns your head to the side quickly 45 degrees and if your eyes jerk or you can follow his finger or you feel dizzy its your inner ear and he said i passed the halpike test.

anyway PM you.

sam x

[Wobbly]

Hi.. Sam..when the Dr put water in your ears for that test...and if you get dizzy.. but NO nystigma...does that mean it's your inner ears or not... is it the getting dizzy or the nystigma that tells them if it the ears?  Do you know that?

thanks
wobbly
undx

[uk2]

Thank you, hope your well.

sam x

[LLWB]

I am so glad you had a good appt. And glad he recognises that fibro is not degenerative. That's the one bad thing about fibro, when they diagnosis it, they quit looking for other things. Glad to hear about your car! That will be wonderful for you! Take care.

Hugs & Prayers
Maggie

[uk2]

Hi

Thanks if i had money i would go private but we do pay for the NHS through the years we work and even through our state benefit so its not like its free and this money is used to treat us when we need it, but the waiting list are awful and we just dont get access to any of our records and unless we kick up we can get them but not the cd version ony ever the writian report never there notes or my brain scans and like i say the wait is so agonising!!

thanks will keep you informed.

[Lulu54]

Sam,
this sounds like such an uphill struggle with the NHS - I am so glad you have a doctor working to push and pull you up that hill.  Here's to someone cancelling an appointment and you getting in earlier.  Keep us posted!

my best,
Lulu

[uk2]

Had my MRI done in 2007 without contrast on 1 or 1.5 telsa this time same machine so a 1 or 1.5 but with contrast this time hoping something will show, of course like he siad he is only a ENT so cant give a dx but can send it onto the new neuro though i am hoping that the new neuro with its neuro hospital will follow with an MRI and contrast of the brain of there own as i think they have a 3 t and do the spine again with contrast.

But its all a start. thanks for your prayers hun means alot.

sam

[doni54]

Yea!  Sounds like this dr was a nice guy and wants to find out what's really wrong!!

I hadn't remembered if you had the MRI with contrast or not.  Can't believe they ruled out MS without this.  I wish they would do the c spine and t spine MRI with and without contrast too, since you have to wait so long to have an MRI.  

I'm so happy for you Sam,  I pray everyday that you will get your answers and treatment so that you can feel better.

Love & Hugs,
doni

[uk2]

At my local hospital its an hour they put air or water in your ears then they tilt you differnet ways to see if this makes you dizzy or brings on vertigo and if it makes nystasam (cant spell) and if that all proves positive its the inner ear not central.

The other place is more intensive tests with the inner ear and eyes in cambridge.

remember i live in the uk the test is called ecg something like that.

hope that helps.

sam

[Fluffysmom]

Wow, a nice consultant, how excellent.  Not to mention an MRI with contrast!  

Where is that balance test done?  My dizziness is nothing like your vertigo, but it still interferes, and so far I've had a balance test by a physical therapist and quick ones done by neuros.  Just curious.

Mostly, I'm happy for you, and hope that a time opens up on the waiting list so you get in to have your MRI soon.  

Kathy

[uk2]

bump