-
Did anyone have ptosis surgery and if so, which kind?
Hi,
I may have ocular myasthenia gravis because of daily ptosis in my left eyelid – seronegative but failed a single fiber EMG. However, it was inconclusive because I have had botox within the past year. As unilateral ptosis is my only symptom, I’m interested in pursuing corrective ptosis surgery. I know there are two different ways to perform this surgery. One is the Müller’s muscle resection (posterior approach) and the other is the levator advancement (anterior approach). As my ptosis is mild, I want to pursue the levator approach because they can be more precise and correct it within 1 mm. The muller approach is less precise and I’m afraid it could over correct it. So I’m wondering which approach is used for myasthenia gravis in case that is the cause of my ptosis?
-
8 Replies
-
If the botox could possibly still be an issue, I would wait longer to have the surgery. Botox is an absolute NO for myasthenia graves patients according to my neurologist. You may have had an over reaction and it may last longer than expected. Ptosis was one of my first symptoms and I also considered surgery but I’m glad I didn’t have it because the ptosis cleared up with treatment. I occasionally have some ptosis in my left eyelid but only if I am very tired or stressed. I wonder if surgery might not have caused more troubles than it would have solved because of the way myasthenia graves reacts to anesthesias, antibiotics, and many pain meds.
-
FYI: Botox is contraindicated for any neuromuscular disorder patient – including MG. It’s been known to actually make symptoms worse. So, definitely discontinue using Botox unless your doctor feels it’s medically necessary!
-
Plus, ptosis surgery can’t be reversed and fluctuating symptoms make getting it right extremely difficult. My neuro-opthamologist said it’s more successful for patients with permanent nerve damage (birth defect, trauma, etc.).
You may want to ask about trying ptosis crutches/ptosis glasses (thin wire bar added to glasses) to help ease eyes open. If you try this, it may take time to fine tune the crutches to apply only the pressure needed to open you eyes and let you blink (at least a little).
-
LOL… I’m far too vain for glasses and glass crutches! If it wasn’t for vanity, I could just live with my left eye looking different from the right one.
-
-
I had the surgery over 5 years ago. ( sorry. Not sure which type. Did both eyes). For a few years prior we had difficulty diagnosing myasthenia and I tried all the physical remedies. None worked. Once confirmed as myasthenia I had The surgery and it proved to be an excellent solution. Wish I had it done a couple years earlier.
-
I was unfortunate that the doctors did not recognise that I had ocular myasthenia gravis, and operated. Operations for ptosis are really corrective cosmetic surgery. But, ptosis caused by myasthenia gravis can be helped with medication. An operation will appear successful, but as experienced in my case within a short time the eye will droop again. It’s better to wait for a diagnosis.
-
I’ve been wondering this as well. I have ocular myasthenia with ptosis in my left eye. Im currently using uqneeq drops to help with the droop but they only last a couple of hours and they are costing me $150 every month out of my own pocket. I want a more long term solution even if it only last a couple of years.
-
My issue is my ptosis is persistent and does not go away. My monthly treatments just keeps it leveled and makes it to where it doesnt get worse but doesnt fix it
-
This sounds similar to my ptosis. Do you know for sure you have myasthenia gravis? I’m skeptical that I actually have it, because I’m sero-negative and was told the single fiber EMG was not valid because of my previous botox. And mestinon does not take away my ptosis. Neither does the low dose of prednisone I’ve been taking for a couple of months now. Mine is also persistent but is definitely at its best when I wake up and worse in the evening. However, I have read that all forms of ptosis (congenital, involutional, etc.) are worse in the evening. I have had ptosis in my left eye for almost 3 years now. For the first 6 months, I used upneeq in that eye every day. Then upneeq started making that eye red and watery with a swollen eyelid. Went to an eye doctor and found out upneeq caused punctate keratitis in my left eye. Even 2 years later, if I use upneeq, my left eye will be very red and swollen looking the next day. Also, the ptosis will be worse the day after using it. I would love to just be able to get a one-time surgery and be done with all of this and not to have to mess with immuno-suppressants. I went to an occuloplastic surgeon who recommended a mullerectomy on both eyes, with more tightening of the muller muscle in the left eye. This is because I have ‘herings law’ compensation in my right eye, so when I use upneeq in the left eye only, the right eye becomes ptotic. Would love to get the surgery, but so scared it will make things worse. Wish there were more studies and research about people with myasthenia gravis and ptosis surgery.
-
-
Log in to reply.