Cataracts and PSP

[Chrissmitch]

Has anyone any advice on cataract surgery for PSP patients my partner has them in both eyes but the hospital has said there is nothing they can do, he has lost sight in the right eye and has very little sight in the left eye, they say it's too difficult to operate but surely if something could be done it would improve his quality of life enormously, any one had experience on this subject, thanks

[Yvonneandgeorge]

The doctor said the same to George, I said he had PSP surely he could have them done to have some quality of life, waiting for a letter, not sure if they will do it, it's so unfair Yvonne x.

[enjoysalud]

I live in Los Angeles, Calif, USA. My 54 year old son lived close by to me. He died of PSP May 4, 2017.

His first symptoms (double vision and slurred speech) appeared March, 2014. After many tests Kaiser Permanente DX him Jan of 2015 with Parkinsons (PD). He sought a 2nd opinion at UCLA. July 2015, the UCLA Neuro said he could not definitively DX PD....needed more time to go by.

April, 2016, he was given surgery for a cataract in his right eye. His vision improved considerably but double vision still persisted. His vision at the end, last two months or so, declined considerably and he was almost totally blind.

Over here, if the ophthalmologist is willing to operate then the cataract is removed.

[Sarah1972]

Hi my mum was fortunate enough to be referred for cataracts before her diagnosis. When I phoned and booked in for her second one I mentioned her PSP and was told me that it wouldn't be worth doing. I hung up before I gave any further details. She went ahead with the 2nd eye and she was really pleased with the outcome and had no problems at all. I would strongly challenge the decision as I have an awful feeling they just don't think it's worth spending the money on. I think my mum would agree that it really was worthwhile even though her sight has deteriorated since. Good luck xxx

[EricaE]

Hello Chrissmitch,

Have they explained why it would be too difficult?

My 75 year old brother - born with a lazy eye and having had lifelong poor sight in both eyes - was diagnosed with cataracts before he was diagnosed with PSP. His ophthalmologist recommended him for surgery as, although she said the sight in his left eye would not significantly improve, the sight in his right eye would be "better than it has ever been."

When he was diagnosed in June with PSP we feared they would not proceed. But last Monday he had the cataract in his right eye removed.

I'm so sorry your partner has not been offered this opportunity. Is it possible the cataracts have gone too far to be removed? I have read that if a cataract is very advanced, although removal is possible, it is far more difficult to remove and the risk of complications increases.

I do hope this is not the case and something can be done.

Erica

[carehope]

Hi there ! My sister had cataract surgery when she already had PSP. The ophthalmologist who performed the surgery said that there was no reason not to remove her cataracts. Anyones ' sight would be totally lost if cataracts were left in place. Granted, PSP creates marked difficulties with vision, but to condone neglecting cataracts makes no sense. It sounds as if the doctors are lacking the necessary expertise . We're in the U S., so medical care is very differently managed as you know, but this sounds pretty deplorable !!! Maybe you could find a doctor who is more qualified ? Hoping that you succeed in getting the care that is needed for your partner !

Take care, Elise

[PSomani]

Hi. I live in India. My mother who has PsP had both eyes operated for the cataract about 4 years post diagnosis. She was however checked by eye specialists prior to the surgery specialising on the neuro-optho side. Luckily it was done before her vertical eyeball movement got impacted.

All the best for your partner. God bless.

[Kevin_1]

Hi Chrissmitch

As someone who has had both eyes done. It is done under local anaesthetic and it makes a huge difference.

I suspect the legalities of this are something like:

T refuse an operation which a patient needs there has to be good clinical reason. E.G. The operation is not possible with PSP, or it would worsen the condition. Someone else would benefit more is not a legally acceptable argument under the NHS Charter. Such an approach would also be discriminatory against disabled folk.

You are entitled to have a second opinion from another Doctor independent from the first. E.G. Different Hospital and that is important. A colleague of the first Dr is not a proper second opinion.

The other thing to do is to ask for a letter detailing his/her decision and the reasons for it. This generally causes careful reflection on the Doctors part as it could be passed to a solicitor.

I do hope this helps.

Best

Kevin

[johns65]

My husband (73) had both cataracts done and it didn't give him any better sight, in fact it made it worse. We feel that this was something that "opened the door" to PSP . He was diagnosed when he was 71. I hate this PSP!!!

[Kevin_1 in reply to johns65]

Hi Johns65

I am so sorry you have to deal with PSP too.

It is miserable and it hurts, deeply, all those involved.

My heart goes out to you.

Warmly

Kevin

[am2015]

My mum had cataracts in both her eyes, one eye was operated on on early stages of PSP. The Consultant did want to operate on the second eye because she was her mobility was limited, only to the toilet. He didn't want to put mum through this as it would not have a significant impact on her quality of life. However in your mum's case, you should ask why they have refused because she has already lost sight in one eye, so it would definitely improve her quality of life. All the best.

[Kevin_1]

Sorry - I missed the part about loss of sight in one eye.

Forgive me.

It is quite common not to operate on a single visioned eye.

Because of the risk of total blindness.

I gave bad advice.

Pleas forgive me.

Warmly

Kevin