No to ptosis surgery

[tallyho]

Hi all I went to ocularplasty today. Even though I have quite bad ptosis they can’t do the surgery due to CCG criteria. I also failed the eyelid test and since I new worsening of double vision and new prism onto of my one in my lenses I have just had a blood test for myasthenia

[Hidden]

Hi tallyho

So sorry to hear of all your health problems. I am sure your medical team will know what works for you and what does not, but I know that is hardly a consolation for you. Sending you my best wishes.

[SYLKE]

So sorry to hear your bad news, I do hope you do get better news soon. Take care tallyho.

[Hidden]

Hello tallyho,

My daughter suffers from Myasthenia Gravis and one of the first symptoms that manifested itself was a drooping of the eyelids. She was put on quite a few medications which helped a little. however, Myasthenia Gravis is an on going condition, much the same as macular degeneration, and also, alas, without any signs of a cure. I was given a manual on this condition when my daughter was first diagnosed, and it seems like no one is willing to give any of us straight answers today. However, my daughter is now aged 46, and has held down a job for the last 18 years. My thoughts are with you in this scary world of diagnoses. I know that you will arrive at a place where you will be able to cope. My thoughts, and best wishes are with you.

[tallyho in reply to Hidden]

Did the medication help with the double vision and ptosis?

[Hidden]

Hello tallyho,

My daughter did not have double vision, not as far as I know though, and neither did she have ptosis. However, she did have a problem with keeping her eyelids open because of her myasthenia gravis. The medication that she was given was called pyridostigmine, but that was to help her muscles in general. You have not had your test for myasthenia yet though, so there is a chance that you may not have this condition. Please let me know the results of your tests. The upside is, that her eyelids do not droop like they used to, they only droop slightly when she is overtired. I am thinking of you and hope that you have positive results.

[rosyG]

Sorry to hear this. If your doctors think surgery is needed I would say you want to appeal the decision of the CCG. Find out if it's done in other areas as this will strengthen your case

[tallyho in reply to rosyG]

Thanks for your reply the guidance is nationwide but if I do have MG maybe the medication will help