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  • Have You Had Eye Surgery to Help Your Vision?

    Posted by Jodi Enders on January 10, 2023 at 4:23 pm

    Many people living with Myasthenia gravis say they received eye surgery before and after MG to help improve their double vision.

     

    Unfortunately, most of those who receive vision improvement surgery before a diagnosis had to go through something of that extent before knowing that Mestinon or other MG treatments could help their eyes.

     

     But MG treatment doesn’t work for everyone, so people still try surgery to see some progress hopefully. 

     

    Have you had eye surgery either before or after your MG diagnosis? Did it help with your double vision? What type of surgery did you receive? Were any unwanted side effects or symptoms experienced due to the surgery?

     

    – Jodi, Team Member

    David S replied 1 year, 3 months ago 10 Members · 11 Replies
  • 11 Replies
  • John Siberski

    Member
    January 18, 2023 at 1:58 am

    Perhaps a bit off topic.  I am expecting cataract surgery in the summer.  Last year diplopia was becoming more and more of a problem, particularly when driving.  The doc put prisms in my prescription with a remarkable improvement.  Minimal diplopia now unless extremely fatigued.  Not happy about the need for cataract surgery but the halos around the cars are larger than the cars.  It is time.

    If prisms haven’t been tried it would be a good option before surgery.  Perhaps not 100% improvement but reversible.

  • Mike

    Member
    January 18, 2023 at 5:33 pm

    I had eye surgery many years ago when my eyelids drooped and I had double vision as well. This all started when I apparently had a ‘tia drop’ stroke I think they called it. I was prescribed prism glasses as well to help   correct the vision. Unfortunately this was before I was diagnosed with MG. I was started on mestinon and prednisolone, reasonably high levels I guess, reducing as the effect kicked in. I still take both, but only 5mg of prednisolone and 3 or 4 tablets of 60mg of  mestinon now. I’ve no doubt the surgery helped, but I think the mestinon did more for my drooping eyelids than the surgery and the glasses personally, good luck to everyone with MG, it’s a trying time working out the best way to tackle it

  • Phyllis Scullion

    Member
    January 18, 2023 at 6:00 pm

    Diplopia was my presenting symptom. It steadily got worse even though I  was taking Mycophenolate ( Mestinon doesn’t help me at all )  Prior to surgery I got to a 35 frenal prism  and now 2yrs post surgery I occasionally need to use glasses with a integrated size 3 prism when I am tired. Surgery was definitely a success for me although it did take time to get to the end of the process it was worth it!

  • Stephen

    Member
    January 18, 2023 at 8:34 pm

    I started with double vision over two years ago. It was attributed to 4th Nerve Palsy.  I got the corrective prisms that worked great. A couple months later a developed cataracts in both eyes and had surgery. Still using prisms but on reading glasses. Then came Covid. Mestinon and Cell Cept have helped , but not with my vision. After  thru IVIG, Plasmapheresis and facing chemotherapy with no improvement, we changed neurologists. My new doc said I had a mild case of MG and wondered why I had all these treatments. He said my double vision is not due to MG. Because I do not see the same image with either eye and it is due to something else. This new doc did more tests on me than the old one did in almost two years. Most of my symptoms are probably due to extremely low vitamin B12 and my diabetes.

  • Carlos A Galindo

    Member
    January 18, 2023 at 9:20 pm

    I had surgery on my eyes, a procedure named vitrectomy back in 2016 due to eye floaters. The results were great in one eye and extremely bad in the other which happened to be my good eye. My vision went from 20/20 to 20/25 (I think), either way, I needed the surgeries. Now I am dealing with really bad droopy left eye lid that really has not gone away with IVIG treatment for over 1 year. I recently started Vyvgart and the first month it seemed to have helped at least for the first week or so after the infusion month. Now I am starting my second dose (1week in) and have been struggling with my eye lid really bad. BTW, my daily medicine dosage are 4-5 mestinon, 1 time release mestinon (at night), 5 mg/day of prednisone, and 2 x 1500 mg/per day of cellcept. I hope someone mentions if they’ve gone to a specialist to have surgery due to MG with ptosis issues.  i am new to prism glasses for double vision, I’ll have to look into it and bring it up to my neurologist.

  • Carol Mitchell

    Member
    January 19, 2023 at 12:42 am

    In 1993, after 7 years of double vision and wearing very thick glasses with prisms, I did have muscle eye surgery to correct my double vision. The doctor is was a pediatric eye surgeon, and the surgery improved my vision. However he did not succeed in correcting my left eye totally. He told me he was not sure he could correct that eye completely. The brain compensates and is able to pull both eyes together. I have prescription glasses with a small amount of prisms in them. I don’t wear them all of the time. I do wear them when I drive. I am really glad I had the surgery because living with extreme double vision for the rest of my life is something I did not want to do.

  • David

    Member
    January 19, 2023 at 2:56 pm

    Hi all, this is my first post so please be gentle…

    My MG was picked up by an optician, I wasn’t getting double vision but had ptosis without realising it. Eventually after the general tests MG was confirmed by facial electromyography.

    Eventually I had an operation on my eyelids to stop them dropping over the pupils, it was quite simply the most successful operation I’ve had. Carried out by the NHS in Bournemouth UK.  I hadn’t realised how much my night vision whilst driving had been affected by ptosis.

    Thankfully I’ve never suffered double vision, however one thought for you to consider…do you test your blood sugar levels….I am theoretically type 2 but if you are taking prednisolone it raises your blood sugar levels and this can cause eye issues, glaucoma etc…

    Just a thought for consideration..I’ve started using low Gi foods, slower carb release and the change in controlling the spikes has been remarkable whilst still maintaining a healthy balanced diet.

    David M

  • Mark Ritchie

    Member
    February 15, 2023 at 5:14 pm

    I would be interested to hear from David M please. I live just next door to Bournemouth, UK.
    I am considering surgery for ptosis and would appreciate the benefit of his experience.
    Thanks, Mark.

  • Mark Cox

    Member
    February 15, 2023 at 8:42 pm

    I’m 62 and Like most my MG started out with double vision a year ago and I used the pixel glasses for a short period until the Vyvgart kicked in to clear my double vision.

    My concern now is that my vision has changed 4 times in the last 9 months mostly In the right eye mostly which includes new prescription eye glasses each time and getting expensive.

    Crazy enough, I’m typing this without readers during this current change which is a first in a long time without readers but concerned what comes next…I’ve been seeing two optometrist and both are baffled thinking it has to be related to the MG in some way as there are little or no signs of other causes.
    Don’t know if there are any medical procedures for this other than new eye glass prescriptions each time but if it turns into more of a surgical matter I will share it later…

  • John Lapper

    Member
    February 15, 2023 at 10:37 pm

    Very interesting discussion. Double Vision May 2021. Went to optometrist, to eye cataract surgeon (no cataracts) to eye surgeon who scheduled surgery. At one week pre op Surgeon realized my double vision was off the charts and unbeknownst to me ordered me to see a neurologist and order a mg blood panel. Came back positive with Ocular MG. 21 months in 4th boot with double vision for 5 weeks. 40 mg prednisone not working this time so added 1000 mg cellcept daily. Patching my eyes daily. Not sure if built of resistance to Prednisone or disease is progressing. Stress is not my friend.

  • David S

    Member
    April 1, 2023 at 3:43 pm

    Had cataract surgery in my right eye last Thursday.   What a difference.  After just a few days my right eye vision is much clearer and brighter than the left.  Most of the bluriness and what I called double vision, is clearly from cataracts.

    Left eye in two weeks.

    Scott

  • David S

    Member
    April 17, 2023 at 3:13 pm

    Had my left eye done last Thursday.  The change is remarkable.

    Blurriness is gone.

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