I met with the surgeon and he said I was a good candidate and the procedure should go well. He looked at the CT and said it would be 'easy' , I suppose my thymus is a good 'size'( guessing smallish )and said that since I was not on prednisone that would make healing and recovery better.
So I suppose it is just up to me to look around and find my big boy pants and schedule it .

I have a VATS , transcervical thymectomy , scheduled for Feb 28. Was surprised at the consult with surgeon that the fact I was asymptomatic seemed to not matter. When I started questioning my confidence in the diagnosis, he stated that given my doctor , he was in no position to question the diagnosis, made me feel two ways : these guys are in kahoots and crap they are probably right.
Running out of reasons to dodge .
Just found out this morning that our daughter will be able to attend a respite camp the same week, so will not have to worry about carrying /lifting for at least the first few days.

My experience seems similar to yours. I started out with ocular symptoms only for a period of time. It took a little while for a diagnosis and then I started to get some muscle spasms. The only thing that really seemed to keep the double vision in check was prednisone. After 10 years and many meds including IVIGs, legs were getting tired more and more and I developed choking spells. Three weeks ago I had the robotic thymectomy. The operation took almost 5 hours and I was in the hospital for 2.5 days. The residual pain was minimal and doing most normal things already. Too early to tell if the surgery will help but I am cautiously optimistic. When I had the chest X-ray they said my thymus was still prominent which should not be the case for a 55 year old male. When the thoracic surgeon removed it he stated it was the largest one he has ever seen. So my only non doctors advice would be, try the prednisone and get the chest X-ray and inquire about the size of the thymus. If it is too large you may lean towards the thymectomy. Be well.

Mack hope all is well , glad to hear about quick bounce back from the surgery.
Sounds like a transcervical vats could be even less invasive , I've seen recovery described in terms of 4/5 days, fingers crossed , lol.
The camp for our daughter unfortunately went south, but I still plan for the surgery at the end of this month. Just a little juggling with schedules and getting help in for the day of and hopefully some help with a couple days after .
Another bout of dv started and is just about fully 'ramped' up, always starts intermittently and the proceeds to daily practically all day.
Just started painting the spare room when it started , hard to get the trim and not the wall when using just one eye , lol, no depth perception.
Figured I will just ride out this bout , being so close to surgery and visit with doctor about starting prednisone after.

TMJ - good morning. just wondering how it went with your doctor? I've have double vision for over 8 months now and nothing has helped: mestolin and prednisone (at one point I was up to 80mg every other day - I'm back down to 60). The only help I've had from prednisone is it did get rid of the slurred speech and muscle fatigue, but that's it. I had my 3rd MRI in as many months this weekend to see if they can find something new but I'm not hopeful, so I too will be evaluating surgery in the near future. Hope you are well.

cwfk
I'm scheduled for surgery(transcervical vats thymectomy) on the 28th. I have an appointment this week for pre-surgery tests/form signage.
My double vision( the only noticeable symptom aside from drooping eyelids) started last Feb and has been coming and going, lasts for a few weeks and then seemingly resolves. Was on pyridostigmine but didn't seem to do much for the dv.
After getting a referral from my neuro-opthamologist for surgery and reading the latest study( I think up thread is a link to it), I decided on the surgery.
I know the surgery will not necessarily correct the dv, may make it worse for a time, but hopeful that the thymectomy could mean less bouts of dv, and perhaps help generalized symptoms stay at bay or minimized, coupled with ,again hopefully, less need for medication going forward.
After reading around here, I feel lucky that so far at least it's only dv, not that dv doesn't flat out suck lol.
Let me know if you ever run across any 'cool' eye patches ;)

Just returned from overnight stay after Thymectomy. I had the transcervical vats, has anyone experienced a twitching or quiver around the wound site?
So far so good, feel pretty beat up and tired but pain medication is rounding out all the edges.
Go in two weeks to the surgeon for a follow up . And will hopefully be able to schedule a visit with the neuro-opthamologist to discuss immunosuppressant therapy, this double vision has to go, lol.

Glad to hear you are "minus a thymus" -- the first days after surgery are the worst -- no strength and major constipation! Take it easy, ~Joe

Lol "minus a thymus", sounds like a tshirt.
Feeling better already, the first couple days were a little rough, the miralax really helped get things going.
The hospital and staff were great, HUP. Woke up with a foley catch wasn't expecting that. They said it would need to be replaced if urine output wasn't such and such by the eight hour mark after removal, so I drank as much water as I could get my hands lol.
It was my first surgical experience, all went well , got up and about as soon as I could , being a little doped up the nurse and my wife had to chase me down the hall to tie the gown,apparently modesty and your butt go out the window when you're kinda focused on not getting a cath reinserted without the benefit of anesthesia .

Can’t believe the surgery was two years ago, feels longer.
Since surgery I’ve had fewer episodes of double vision, maybe every other month and they seemed to be shorter in duration and less intense/bothersome.

Now though , I’m experiencing some pretty noticeable lid droop on left eye and it seems to trigger some do , especially later in the day/night watching tv ect.

I haven’t been on any meds since surgery. But because the droop has been hanging around I tried some prido, 1-2 tabs (60 mg) . They never did anything for my double vision but was wondering if lid muscles would react /be stimulated . Didn’t have much effect on droop , but boy was I reminded why I didn’t like taking them before . About and an hour so after a 120 mg dose I experienced the weirdest side effect, the same I had presurgery , the pixelated vision , patches of my vision field appear blurred, but not fuzzy it actually looks like an electronic/ video thing, like being extremely close to an older tv screen and seeing the red/green/yellow ‘dots’.

I haven’t been to neuro since post surgery appt , the dv bouts seemed to be petering out , but this lid thing is bothersome and lasting longer than I am comfortable with.

Anxiety/ frustration amplifies the symptoms , I’m guessing that is common? Been a little riled lately which is not helping.

Nice to hear from you again!

I re-read the posts in the thread and in summary note you came here with diagnosis and symptoms of some double vision and some drooping eyelids, were found to have a somewhat enlarged thymus, had it removed two years ago when you stopped medication. Now 2 years later you are still having some DV and some drooping eyelid (ptosis) is returning -- and you have only ocular symptoms,

I was quite bothered by double vision and ptosis and tried eye patches, taping one glass lens, finally letting one eye droop shut. The world as seen through one eye, seemed to me about 1/3 of what we see through 2 eyes. I think I would have taken immune system treatment just to get my eyes to be normal. My DV was constant as was my eyelid droop-- but along with it I had the rest of MG too-- body head plus eyes so the decision to take prednisone was easy to start. I was so pleased with normal vision I know I would never live without it in the future even if it meant prednisone long term.

Some folks use a special tape to help keep their eyelids open. That would be worth trying. If your eyes normally are partially closed there are surgeries that can open them more and possibly make the drooping less. It is worth talking to an eye specialist about the strategies that are available.

I read this research about ocular mg

Myasthenia gravis (MG) is an autoimmune disorder that affects the postsynaptic neuromuscular junction membrane. Acetylcholine receptor (AChR) antibodies are frequently present, and the number of functioning postsynaptic receptors is reduced. Muscle-specific kinase antibodies may be identified in individuals with and without AChR antibodies. Ptosis or diplopia due to ocular muscle involvement are frequently the first symptoms of the disease.2 Approximately half of the patients are first seen with purely ocular MG (OMG); of these, 53% develop generalized MG (GMG) within 2 years (> 80% in the first year). Furthermore, a spontaneous remission rate of 30% has been reported in patients with OMG during a 15-year period.3 Both AChR and muscle-specific kinase antibodies may be present in OMG. https://jamanetwork.com/journals/jamaneurology/article-abstract/794822

If I read it right, you have a 53% chance of ocular developing into general so 47% chance of not advancing. And a 30% chance of remission. Those are decent odds to delay treatment and first try other methods to deal with the eyelids. I did try taping mine open with a medical thin tape that sort of worked.

Search the internet on ptosis prop and ptosis tape and see what you find. There are some items that may help

Good luck
Russ

There is no solid research saying ocular is improved by thymectomy. My personal opinion is that thymectomy is unpredictable they have no clue who will respond and who won’t. That’s because there is a lot more to the disease than just the bad ACH antibody.

I wasn’t aggressive and I went down hill fast and ended up on respirator. This was all years ago but they recommended prednisone and I didn’t want to go that route. I wished I would have..

Saw my local ophthalmologist , he suggested I see the neuro/opth , vision is fine on exam just the ptosis and nothing he can help with.
I wanted him to refer me back to the neuro as i would get an appt quicker :)

I had an appointment with neuro-opth and he gave me 8 wks to decide on starting prednisone.
Still have the ptosis, and realized that for awhile now I have noticed a 'cloopy-footed' gait. Staring by blaming it on thick/stiff soled footwear , until I realized I had it barefooted after shower in the house.
Mentioned it to the doc and had me walk on my heels, turns out I can't do that at least poorly with right foot and not at all on left.
I did warn the doc that I was in 'special' gym as a kid apparently it took me awhile to learn to skip lol.
I've always had an unusual gait , so the cloopy foot fells didn't register at first, but the non heel walkability was an eye opener, lol.( I wish it opened my eye !)
I have to say , the prospect of starting prednisone is less appealing to me right now than the symptoms that will(?) be alleviated.