Eye operation

[erin]

This is my second attempt at posting this, so let's hope this one succeeds.

My husband has been having Botox for eye closing for the past couple of years. It was brilliant at first, but became gradually less and less effective. Now it doesn't work at all.

After the last, final attempt the ophthalmologist suggested an operation.

He proposes to cut along the crease of the eyelid and through the muscle. It would be as a day case, 45 minutes per eye.

I have searched and searched and can find nothing about this being used for PSP.

I will contact the neurologist, but I wondered if anyone has had this suggestion put to them?

[NannaB]

Ahhhhh! Sounds awful but I will be very interested in reading replies you receive from anyone who has knowledge of it.

[easterncedar]

Sounds like something that needs a good second opinion. But has your doctor done this for a psp patient before? I'm interested, because my dear has recently begun to be very troubled by his eyes closing The surgery sounds radical.

[onthemead]

Sounds horrid. After discussion with our eye man, and with one of our local group who had been unsuccessful with Botox, we decided against. However, this week we picked up a pair of specs with Lundie loops, organised by the lovely girls in the opticians at Plymouth Royal Eye Infirmary. J finds them quite comfortable and gave them a good try out when we went and watched "the second exotic marigold hotel" on Thursday. she's now looking forward to be able to keep her eyes open on our tour of Ireland, which starts today in our camper. Oh, price £130, as we weren't referred, but I don't see why the NHS shouldn't stump up really.

[Heady in reply to onthemead]

Hi, what are Lundie loops? Never heard of them before!

Lots of love

Heady

[erin in reply to Heady]

They are glasses with a loop of wire attached to the rim on the inside. You place your eyelids around the loop once the glasses are on. The eye would obviously dry if you wore them for too long, as you can't blink, but they were useful for going to the pictures, for example.

Another type are called ptosis props and have a stick on top and bottom that does the same job.

They look pretty awful, but serve a purpose for some.

My husband never really got on with them, but any option is better than none.

[PUTLAND]

My husband has been getting botox for at least two years, but has become less effective, we have not been offered any alternative. I would be interested to know has this been used on PSP patients and whats the success rate.

[erin]

My husband had the Linda loops quite early on, but eventually they didn't help, hopefully your experience will be better.

That is a good question to ask, has he done this on a PSP patient before? I suspect not.

Obviously my husband is willing to try anything.

We have blackout blinds on the window as he is so sensitive to light. Once we are outside, even with sun specs, his eyes will just not open, so he is functionally blind. Awful.

Thanks for the relies x

[cabbagecottage]

I can't helping thinking my husband is sleeping because his eyes are not opening . I prompt him but they immediately close again . then he will start jumping and jerking .

struggling to open his mouth but still is asking to eat . Gravity seems to keep pulling him back .

his head is pulled down and twisted to one side which he does say isn't painful , it certainly looks as if it is .

I am interested in Botox , having said that he has had adverse effects from some MEDS . .

[erin in reply to cabbagecottage]

Thank you for replying. The eye closing is very sad as it is so isolating.

When it first started we would say "1,2,3, click!!!!" and click our fingers, then they would open. That doesn't work any more, but may for others.

You are further down this road than us, my thoughts are with you x

[jillannf6]

hi i have no idea of what it might involve but my neuro says |"wait wait for the botox injections" i now know why as they will only work for a while

and then i will be back to square 1!

lol Jill

ps ur post has got thro!

hugs and xx x to you and your husband

[erin in reply to jillannf6]

Thank you, Jill. The Botox was well worth having, I'm sure your doctor is right, as it does seem to give out eventually. X

[onthemead]

As other posts say, they physical prop the eyes open. Now.... J rarely blinks. A symptom noticed by a friend of mine years ago. (?parkinsons or PSP). The optician said be careful about J's eyes drying. I said I dont think it will be a problem, her eyes water copiously instead. But listen, with the specs/loops J appears to blink almost normally! ..... So, as usual nothing straightforward with PSP. And the loops are really helping. For how long? We'll see. Good luck. Incidently, I always assume, and tell friends that J is awake when her eyes are closed.

Pass me another Guiness pls. (We arrived Wexford a few hours ago)

[GenaBenedict]

erin. BOTOX IS ONE THING I WOULD NEVER TRY I'M HAVING TROUBLE KEEPING MY EYES OPEN I HAVE TROUBLE IN THE SUNLIGHT I HAVE TO WEAR GLASSES TO SHIELD THEM. IM HAVING TROUBLE W/ MY SLIME IT DRIES UP AT NITE. GENA