Neuro Opthalmologist

[Nackapan]

Has anyone had help from these consultants?

[bridgeit]

Hi Nackapan, I'm sorry to report that in my case the answer has to be a resounding "no". Without going into detail, my NHS consultation with a neuro ophthalmologist was by telephone, short and disappointing. It resulted in another misdiagnosis for me without any eye examination. When the call was over, I immediately dismissed the entire experience as a waste of time.

A private consultation would undoubtedly have been carefully conducted and thorough, also very expensive. I'd have gone down the private route if my visual symptoms hadn't slowly improved spontaneously.

Of course, experience can vary greatly between hospitals and, I suspect, dependent upon the age and case history of the patient. If you have a referral, fingers crossed that you have more luck!

[Nackapan in reply to bridgeit]

Waited 16 months Was seen in person.

A total waste of time

I'm still trying to digest the non event.

Im relieved nothing new found.

Did have eye tests.

Nothing that I've not had before..No eye drops ? Was told I'd have.

I was at least hoping for an explanation of symptoms.

Text disappearing being one if many.

I even checked he was a consultant neuro opthmologist.

I thought they understood the messaging processes .

Started on anxiety 😕i cut him short stating the Gp had explored this to ridiculous lengths.

Still don't understand their expertise,??

Thanks for your reply

[Hidden in reply to Nackapan]

Hi Nackapan, you've had a lot of bad luck getting your vision checked, I feel almost guilty finding someone who knew what they were doing first time around. See if you can get your GP to refer you to South Maudsley hospital in London. It's a psychiactric hospital but they also deal with brain injuries. They have a vision expert there.

I've also heard from a friend, not on this site, that Shaylers Vision in Wareham have expertise and use computer programs to map visual defects.

May be worth phoning both to have a chat. I phoned the hospital before and they said if my GP referred me they would test me even though I'm under the health system in Wales.

Another option is Cardiff university eye centre, they teach optometry in the medical science department, and offer tests at the eye centre that is open to the public. Testing was £120 a couple of years ago.

It must be so frustrating.

[Nackapan in reply to Hidden]

Yes very frustrating. A long appointment listening .

Many tests but no different to what I had from Proffessor Evsnd with the colour metre.

He referred me via G.p

I went to Queens Hospital Romford.

I just left confused with even more questions??

Surreal. The furthest I'd travelled I over a yesr too .

I think that the most valuable test along with managing managing a escalator!!!

I will investigate South Maudsley as the nearest to me .

Thank you for your reply.

Hope your work going well.

[Hidden in reply to Nackapan]

The person I mentioned that found the Wareham specialist had gone through the same experience with NHS is going to the US to get treatment. Wareham found a problem but could not offer a solution hence going to the US.

I'm with Janet below on this matter, private seems to offer more but the problem is finding the right person to go to. I also did balancing and spatial awareness exercises which made a big difference.

Have you had any vestibular therapy?

[Hidden in reply to Hidden]

Sorry from the posts below I see you've been down the vestibular route. I have to say that doing vestibular exercises made me worse to begin with but then I dramatically changed after 4 weeks. I still do some of them as part of a yoga/stretching regime and it just keeps on giving.

[Nackapan in reply to Hidden]

Yes that pysio I saw was very good. I do basic ones daily.

Yes can make me feel unwell but fo pay off like you say.

Ivd seen one NHs neurologist.

I had tried thd private route.

Saw Proffessof Evsns . Who only saw me ax I'd contacted retired Proffesor Arnold Wilkins .

(Thanks to you)

2 neurologists.. privately after NHS one discharged me on amitriptyline.

He thought a from a head injury

One very helpful as had an interest in b12 defiency as had it himself.

Condoned frequent b12 injections as thus woujx be life long.

Also b12 is used to aid

post concussion recovery.

He unfortunately died in February . Awful shock.

The late doctor Bradbury.

I went to him for the various head pains and different migraines at the time.

Like you say its finding the right specialist to help . NHS or private

I did have confidence with Queens so waited. !

Will contact Thr Maudsley .

I'm managing v on b12 injections only .

Hsvd turned down so many drugs but once bitten trying amitriptyline then Gp convinced me hrt woukd cure all 3 weeks then hafcs y day migraine.

Latest consultant trying yk convince me I've anxiety abd depression. . I cut him short and ssid thd Gp hax explored this and domrstic violence .

I also added I dhojjd br applauded gif a positive attitude and strong will tk geg better rather than repeatedly testing my mental health.

Also made if clear k woujx trust another drug if mh symptoms were explained and it woukd help me

As he could only offer more trials of drugs. His first amitriptyline. I declined.

K also had a big set back aftef my first AZ vaccine.

So onwards.

Om determined to get functioning better tgsn j am now.

Take care

.

[Nackapan in reply to Hidden]

Just had a reply ftom South Maudsley Hospital they informed me they don't have an eye specialist? .They said they have neuro psychiatrist s pysios

Has tge specialist got a formal title?

Thanks again

[Hidden in reply to Nackapan]

Think this is where people go wrong it's not your eyes, it's your brain that has the problem with processing visual information. Here's the web page- slam.nhs.uk/national-servic...

[Nackapan in reply to Hidden]

Yes i realise that. I thought you meant to see the eye specialist that is there from your post.

They dudnt know anything about the link you sent.

I rang and also emailed. They just signed posted me to see a neuro psychiatrist?

Thank you

for that link .

I will try again.

Now I csn be more specific.

Bad really they didn't work out I meant that department ftom my emai stating briefly the problems.

Minefield

I think I've had deja Vue

Csnt remember what happened kadt time.

I do remember you mentioning this hospital.

Did you get referred by your G.p?

I remember alot of your struggles .

So glad you are still using the forum and helping so many.

I try snd help over on the PA forum. So many have had nasty falls ftom undiagnosed low b12 as well.

T C

[Hidden in reply to Nackapan]

I managed to get sorted privately but did ring the number and was given instructions on how to get an appointment. Basically you need your GP to refer you for NHS or you can just pay and go private. South Maudsley is a vast network of hospitals, units, research and out reach centres. I would think if you rung one department they probably would not know the full extent of all their services. Again it will be a pot luck journey for you, I have no idea of what they do or how good they are. As the visual perception is part of research I would think they would like to get to the bottom of any issues they see. Then again it depends on their funding. So pot luck! I do know they deal with brain injury issues though.

[Nackapan in reply to Hidden]

Okay thanks. I will find out as much as i can.Just need to find a way forward after ladt disappointing appointment.

Sti can't believe they had no explanations st all ?? Especially for the disappearing text as i type??

I've seem NHS and paid to see 2 neurologists. So will soldier on.

Just so weary of trying to be put down the mental health route .

Also so nang in my view inappropriate drugs being offered .

Don't lkjd trust and error.

Havd serc. Sitting in he cupboard now untouched .

I rhino a explanation first needed ggrn if a drug might help I would try it

Meanwhile i will stick with b12 .

Have managed to reduce over the counter pain killers dramatically so tgats a move in the right direction.

Goodness the inner strength it takes not to sink.

Thats never applauded is it?

Thanks

[Hidden in reply to Nackapan]

Keep fighting, it's rehab in itself, keeps the neurons alive and firing.

[Nackapan in reply to Hidden]

Yes .Thank you.

Got to keep trying

Im Positive ill get better than this.

No rhyme or reason at times to variants of symptoms .

Mind is bright .

Body very unwilling.

AZ a big set back for me??

[Kirk5w7]

Hi,I went privately and found it a great experience. They confirmed peripheral vision loss on my right side that the nhs said was within normal parameters and then discharged me, the NHS I mean.

The ophthalmologist said there was nothing to be done but then I had 6 months of rehab type work with his wife who is also trained to work with children to help with autism, adhd and dyspraxia.

I had lots of exercises to do that helped with my spatial awareness and balance.

Worth every penny.

Sorry your experience wasn’t good.

Janet x

[Nackapan in reply to Kirk5w7]

I'm so glad you found someone to help you.I paid to see a pysio at the start who was worth every penny snd hot me walking.

I stopped as the stepped up exercises were triggering migraines.

J still do tge basic Cawthorne exercises for balance.

For those who may still be bedbound tge eye ones are good.

The neuro opthmologist also knew nothing about b12 deficiency which was disappointing.

I still have lots of theories from 3 neurologists but no explanation of symptoms to help with a way forward.

Im improving but very very slowly.

Have regular b12 injections as thats tge only thing at the start found on blood tests.

It was that causing a series of falls.

Thank you for your reply.

Hooe you are keeping as best as you csn be .

[Nackapan in reply to Kirk5w7]

Do yoh mind telling me who you saw? Or o a pm Thanks

[Kirk5w7 in reply to Nackapan]

I saw John Glover optometrist in Romiley near Stockport, Cheshire.I live in Manchester and it was the only one in the area.

Jx

[Nackapan in reply to Kirk5w7]

Thank you x

[Leaf100]

I am on Canada and from what I was told there is not yet any standard of practise or enough research done into methods to have a good idea of what is effective in what circumstances.

Here vision therapy is only available through some optometrists and usually involves getting eye glasses with prisms in them to help sync the eye data with the brain. There are series of exercises which must be done over time at home. I have spoken to people and some ganed quite a bit and some did not - all said the eye exercises make you feel really ill, to the point you can not do anything else, because you are recovering. Everyone said the glasses helped. I have had the exam and will try the glasses, but not the therapy. It is very pricey.

I am not sure if this is the same kind of thing you mean, though.

Hope you have good luck. Finding good therapy is hard.

[Nackapan in reply to Leaf100]

The exercises I tried were from a physiotherapist specialising in balance virtigo and vestibujar disturbances.The exercises do make you feel I.

I had alot of nausea and more head pain initially.

They did pay off though and I continue to go them if getting too focused on objects again.

I actually csnt tolerate prisms before my b1w deficiency and very bad fall.

The text is disappearing from the right . Thard the side I fell on??

Akso pulled to the right on last fslm .

Strong electric surge before vertigo.

Coujdnt get uo from that.

Camr after reaching up cutting vined.

A I think significant movements.

Have given detailed descriptions.

One neurologist dismissed b12 and said all head injury . Well I've plenty of b12 deficiency stymkgons and a blood test result of severe deficiency

Second said a mix but agdin no help with trestnent

White lesions high t2 signals on brain scans dismissed.

Thd neuro opthmologist requested origjnak film of brain mris.

I got this arranged and cds were sent.

He couldnt look at them not a compatible machine ??

Third neurologist said.

Cerebellar? Damage

Vrstibular disorder. No quick fix.

B12 deficiency damage

Said previoys concussion and bad fall he didn't think involved.

Thars why so confused 😕

Interesting in Canada a lottery who you see too.

Thanks for reply

[Leaf100 in reply to Nackapan]

Sorry you are going through all this.I went to a vestibular physio and had to stop because I did not make any progress.

I am glad you are making some progress with it.

It really sucks to have all that going on.

It used to be for me if I watched people running on TV or tried to play a video game with moving things I'd get dizzy and barf. AT the vestibular place I would get such bad tremors and then I could not move my limbs at all.

I do not know if it would help you... maybe something to consider when you graduate from the vestibular therapy .... what I found was playing kids video games helped. I went to a site where you can play free and would try, look for one not too hard but a little provoking, and then play til it stopped bothering me - over time, of course. I started with the time management type games like serving customers something, then went to the ones where you drag things that match in a line (Cradle of Persia for example). Then I went to plants Vs Zombies ... that really baked the old noodle.

Some times I find we kind of have to therapy ourselves.

And really, we have to find our own way through, with as much help as we can stumble across.

Just another thought. Do you do better or worse on amitriptyline? I only ask as that stuff made me really dizzy and caused hallucinations.

In Canada it is very much a lottery even for minimal help.

There is only one neuropysch in my area and he is retiring soon. The health authority here can not keep people because of how they treat them. If I am really lucky I may get referred to one a 3 hour trip away - each way. Am glad video appointments are now a thing... I will take what I can get.

[Nackapan in reply to Leaf100]

I hope you get some help.I stopped going fof vestibular physio ad it brought on headaches and migraines.

J fo tgd basic stuff ag home j learnt daily. Walking looking around .

Eye exercises side yk side really quickly which is horrid but better thsn it was.

Amitriptyline 10mg really knocked me out. J had it o desperation with a really nasty? Migraines affecting my spine. I got respite as drugged .

J took 1p.v every night.

Told to persevere. J lasted about 1p days. O had slot of pressure on top of my head. Ot if tinnitus.

If seemed tk aggravate mh head.

The headaches came back anyhow .

Took longer to taper off thsn I was on it.

Mh daughter found it helpful gif months mainly fof sleep ax alot of joint pain.

Head okay .

My only diagnosis is b12 deficiency

One neurologist thought post Concussion as well

Like you just trying to get functioning and some life back.

Amitriptyline seems thd first line oc trestmeng fof so many things.

Such an old drug.

I can't actually use z bigger screen than this phone.

Or watch the TV. When j try j listen mostly and uses a coloured lens.

That is progress.

I was told thd brain is so complex by last consultant .

I wish you well

[Leaf100 in reply to Nackapan]

I wish you well, too Nackapan