Closing Eyes

[PUTLAND]

My husband has PSP and the about 3 years he has been receiving botox to keep his eyes open. Unfortunately now the botox is not as effective, and our eye consultant has suggested an operation on his eyelids to keep the eyes open the whole time even while sleeping. Please if anyone has had experience of this operation or if they are in the same situation as us I would be grateful for your opinion. Thank you, we have been dealing with PSP for over 9 years,

[Yvonneandgeorge]

Putland George eyes keep closing, and he wants to sit closer to the tv, he came home from the centre today. Laughing he said he had a good day, when I asked him what he had done he said I can't talk, it is so lonely this PSP. He saw the speach therapist today she said the needed to go o to thickened drinks, feel sad I really despise this horrible disease. We are off to London in the afternoon to see doctor at queens square, about catheter, he has another urine infection. So sorry Putland I could carried away, no one has every offered George that operation. This site is wonderful. Yvonne xxxxx.

[abirke in reply to Yvonneandgeorge]

Good luck on your next dr's trip. I hope the catheter is the answer for George....

[PUTLAND in reply to Yvonneandgeorge]

Thank you Yvonne. Hope your visit to the doctor about catheter was helpful. Please take care of yourself xxxxx

[Yvonneandgeorge in reply to PUTLAND]

Thank you Putland all ok just needs to go back in March for some test, you also take care xxxxx

[NannaB]

I've never heard of this operation and can't say I like the sound of it. I presume eyes that are open all the time would need a lot of care and attention. I tried keeping mine open and very soon they felt sore. If it were me, I think I'd rather have mine closed rather than open. My husbands are closed most of the time but at some time during the day, he usually manages to open them. His eye sight isn't that good anymore but he can see some things still. If your husband can consent to the operation then it will be easier to decide but if not, I think it is a difficult decision for you to make on someone else's behalf. Whatever the decision, I hope it is the best one for your husband.

X

[carehope]

Dear Putland ,

Something about that proposed eye surgery sounds very questionable . Yes, as the muscles become weaker , people may keep their eyes closed more often . However , as we all know , our eyelids have very necessary functions. They protect our eyes from injury, dust, dirt, and debris and they keep the eyeball moist . In addition, can you imagine not being able to close your eyes in order to sleep ? PSP is difficult enough . My own feeling is that this surgery would be adding quite possibly any number of complications to a situation that's more than challenging enough for both of you as it is !! I hope that you're not feeling pressured to do this. If you are considering it , I would thoroughly research the surgery and focus on how it will impact your husbands daily living activities, well being, comfort , and safety. Best of luck ! Elise

[PUTLAND in reply to carehope]

Hi Elise, I do feel we maybe adding to our complications with this operation. We are not being pressured into this, my poor husband is so anxious to keep as much independence as possible he would try anything. There would be no turning back if this operation was done, and the more I hear peoples opinion the more I feel it is not for us. Thank you Elise

[Hidden]

I agree totally with everything that has already been said. And I would add that in my extensive research into PSP I several times read that anaesthetic can have detrimental effects on PSP patients, as it can for all older people. Given the average onset age and the fact you state your husband has had PSP for nine years, I am assuming he is well over 60. This really is a decision that needs much thought and research. Good luck.

[jillannf6 in reply to Hidden]

I AGREE IWTH WHTA TYOU ALL HAV E SAID

[PUTLAND in reply to Hidden]

My husband is now 70 and he has this horrible disease for 9 years. It was suggested sometime ago from our speech therapist that he should have the peg fitted, but he refused this and still continues to eat everything. I worry about the effects of this eye operation, and we wont be making a decision without more research and a lot more though. Thank you.

[jillannf6 in reply to PUTLAND]

I AGREE WITH WHAT Y0U HAVE REPLIED TO

L.OL JILL

[Kevin_1 in reply to Hidden]

Yes, full anaesthetic can lead to a big step down in the condition.

[cabbagecottage]

I agree about the open eyes . John are close dor most of the time and I will prompt him to try and open then them when feeding , they won't stay open though .

Last week he was having dreadful hallucinations whereby he suddenly opened them very wide and they stayed wide open for eighteen hours talking to his uninvited quests .,!! He's back to normal now with eyes closed tightly , I do make sure I gently cleanse them through the day though . Using either a gentle baby oil or a smear of Vaseline to loosen they dry crusty bits . Somethimes that will even help him to keep them open for a while

[erin]

My husband's eyes are closed virtually all the time now. Botox eventually failed, but bought extra time.

The doctor there suggested an operation to cut a muscle, under local anaesthetic. He has never done it for PSP before.

Our GP thought that there is too much risk of the lid never closing properly and consequent problems with ulcers and dryness.

Understandably John has decided to try it, grasping at any offer of not being functionally blind. I am dreading it. It's been months and I'm hoping they've forgotten.....

[Chris_F]

Hello Putland

Just like the others here, I don't like the sound of this. My wife's eyes fall shut every day with some days more than others. I can usually coax them open by gently placing my thumbs just below her eyebrows and applying gentle upwards pressure. I have lasting power of attorney for Elizabeth and, to be honest, the treatment you mention sounds horrendous and it's never been mentioned to us...... I wouldn't go for it.

Strictly speaking I should insist Elizabeth has a feeding peg fitted as she's been losing weight at an alarming rate since just before Christmas. However, I know she really doesn't want this and I just couldn't force her to have it done.

Anyway, hugs 'n' all

Chris F

[PUTLAND in reply to Chris_F]

Hello Chris. Yes you can understand we are all trying to do the best for our partner. It had been suggested that my husband get the peg fitted, but he told me he dosnt ever want that. I just think at the moment he is clutching at straws to keep himself on his feet and a little independent. I am sure we will just continue with the botox. Yes my husband coaxes his eyes open gently by pressing the thumbs below the eyebrows. Thank you so much for your opinion. Take care god bless

[Amilazy]

Putland I agree about eyes being closed is probably better than always open. I would also be careful about any operations as pattz says but as you have had to cope for 9 years you are probably more aware than a lot of us. Good luck best wishes Tim

[jzygirl]

Brian has trouble keeping his eyes open and i have just asked him his thoughts on having an operation to keep his eyes open all the time.

A very loud "no way" he said it sounds like his eyes would be very sore like that. Hope that his thoughts help. Janexx

[Katiebow]

I have to agree with most of the replies on this post. I am trying to imagine my eyes wide open all the time and the discomfort it would cause. Also the risk of complications that would but most likely by the eye, being susceptible to dust, sunlight and bacteria. It seems to me that it would cause a lot of pain and discomfort on top of what your husband is already suffering. A difficult decision when a specialist advises but it somehow seems wrong. Xx

[formercarer]

An operation to keep his eyes open sounds awful. I am glad no-one suggested that to us.

In our case I encouraged mum to relax. Her blink (like her swallow) became involuntary.The more she "tried" the less able she was.

I imagine any operation would be performed without general anesthetic. I hope every other possibility will be considered first, including making friends with the darkness. very best wishes to you both.

[PUTLAND in reply to formercarer]

Thank you for your reply, I do have concerns for this operation. I will try all other options. Because my husband is still walking about he has to stop to lift the eyelids up, therefore he finds it hard to move again. Six of one half dozen of another. Your reply is greatly appreciated.

[Escada29]

This sounds horrendous and I feel quite cross they suggested this to you how absolutely horrible as if PSP patients dont go through enough already!!!!

[PUTLAND in reply to Escada29]

Our Consultant mentioned it to us when we said that he is not getting much relief from the botox. There is no problem continuing with the botox I think thats what we will do. I feel so sorry for my husband, as he is still able to walk on his own (with a lot of falls) and the eyes closing is not helping. I appreciate all the replies thank you so much xxx

[easterncedar]

Before I had an MRI last year I had to fill out a medical history form that asked among other things whether I had springs implanted in my eyelids! I talked to the technician about that and then read about it on the Internet. It is something that is done, although not commonly, for people who have trouble keeping their eyes open. I have never seen anything about it on this site, but I would look into it further before I had anything more radical done.

My guy was scheduled for the Botox, but had a fall that forced cancellation. We weren't able to get another appointment for long enough that he stopped complaining about his eyes closing. Perhaps he is getting used to it, but I really think his ability to process visual information is getting so poor he doesn't care as much. Which is another reason not to do anything radical.

Now you've had all our opinions, perhaps you might ask another doctor about it?

Love and peace, ec

[PUTLAND in reply to easterncedar]

Thank you for your reply. Yes I do think it is a radical procedure to have done. I understand that there is no turning back if you have this done. I think we will continue with the botox every 6-8 weeks and out of that he may get one good week. Thank you so much for all the advice, this site is so good to voice your concerns and see other peoples opinions. God bless.

[DenB]

How horrible! That sounds really drastic......I would get more advice about that If Iwere you.

D x

[jillannf6]

IAGREEE IT SOUJDS HORRENDOUS

LOL J`ILL

PSP PERSON IN TEHJ UK

XXX

[abirke]

I have heard of some surgery. I don't believe it was as invasive as this is will be. I really have to go with what the others say. This surgery, if it actually keeps the eyes from ever closing, could be painful and cause more problems than they solve. I would definitely have another talk with that dr and see what the positive and negative effects will be. Good luck with your decision....What does your husband have to say about it?

AVB

[PUTLAND in reply to abirke]

Thank you for your reply. My husband is so determined to keep his independents as long as possible his is looking at everything that can help. I feel there are more negative effects for this procedure, and at the moment he is getting some relief with the botox, so I hope to prolong this decision.

[dllera]

Hmmm - I have not heard of this before - My dad had his bottom lids fixed so they wouldn't roll into his eyes but never had suggested surgery to keep eyes open all the time. Wouldn't they dry out if they are always open?

[easterncedar]

Some time ago someone here wrote about Botox causing his wife's eyes to be open all the time, and how awful it was. That has made me wary about that, too.