Eyes closed - Botox?

[techtone]

Hi,

Could anyone tell me a little more about Botox treatment?

Mom has her eyes closed now for most of the time even when trying to find a cup of tea on the table in front of her.... It is difficult to get her to open them and look around....

Thanks

Tony

[anniemay]

My husband Tom had botox treatment for about 2 years. For the first year it was wonderful, a new lease of life. It is a number of tiny injections along the lashes line of upper and lower lids, every 6-12 weeks. It is quite uncomfortable for the patient - the consultant said to us she knew it was of use when the patient was willing to come back for another treatment! Unfortunately, as time went on the pain and bruising following treatment became worse and the treatment was getting less effective all the time so Tom decided not to continue. His eyes are closed most of the time now, which is a real challenge to mobility.

However, given the quality of life as the disease progresses, in our case that year was definitely worth having!

best wishes, Ann

[techtone in reply to anniemay]

How did you go about finding a consultant to perform this?

Also are you in the UK?

Thanks

Tony

[anniemay in reply to techtone]

Yes we are in the UK. GP should refer you to the hospital eye consultant - at Bath hospital where we went medical eye emergencies can be same day referral, but our GP did not at the time understand the problem sufficiently to be of much use, fortunately we had been recommended by PSP Association nurse to apply for hospice care and the doctor there who examined Tom wrote directly to the eye consultant and we got the first Botox within a couple of weeks. You need to stress to everyone the urgency due to the nature of the disease - that immediate treatment is required as quality of life in 6 or 12 months time could be considerably different to the situation now.

Best wishes, Ann

[kryste]

We have tried the Botox and there was no change its crazy when she is awake she has to sometimes hold one eye open with her hand but when she sleeps her eyes are wide open the whole time we are also doing a sleep study when we go to UCSF