It's taken me awhile to get somewhat caught up on reading the posts, and I know that, as usual, I'm a day late and a dollar short!  But Annie, I'm so tickled over your progress and success!  It just does my heart good to read things like "there is no movement" and  "vastly improved" and "it doesn't hurt at all and sees just fine!"  You deserve a big ol' ...

 

 

Good job, and way to go on finding a good doctor!  Does your doc have any South Ga cousins?? lol

 

Angie

I know what you mean about the feeling in your surgery eye.  It is very subtle, but definitely there.  I think that, for me, it must be, not so much from absence of the missing piece, but from the additional use/stress of the other muscles that are compensating.  Not exactly creepy, but a little weird.

It is snowing AGAIN!  For crying out loud.

 

I am headed to Madison soon for an appointment on Friday instead of waiting till the end of Feb.  Of course, we could have a blizzard, and then I'd have to wait......  The correction in my new glasses needs to be adjusted because there is some distortion in my left lens.  I never had a prism in that side before, and it will evidently take some experimenting to see just where to put it.  The idea is to pull the vision over since that is the eye that ambles around and always has.  It would  help to decrease eye fatigue if it works out and that would be kind of a nice extra that I didn't plan on.  If it ends up working better to remove that prism, then it wouldn't really cause that much difference.  I could get along without it fine since I have for eons. We shall see.  (Pun not intentional.  But there it is.)

 

I think we will check out the prism in the right eye also since it works perfectly for far vision, but things are not quite as clear for near.  However, when I am reading with both eyes (which is something I now can do all the time, yippee) I don't notice much trouble.  Again, fine tuning, I think.

 

The eye people didn't really want me to be wearing glasses that aren't quite right for an extended period, so the appointment was moved up.  Very happily diplopia is not an issue, and the SOM eye remains still as a rock.  Any diplopia is still evident only when I wake up, or when I take my glasses off, and only lasts--even without glasses--a few minutes until my brain makes things come together.

 

A really nice thing about the whole deal is that my sister can plan her work schedule so she and I can actually have lunch together ALONE.  We have not done that for a long time, and it would be so nice to just sit and chat and not be on a time line. 

 

I thought up another bunch of questions that I will ask Dr. K.  Among those is how much of the inferior oblique he removed.  I know that the superior oblique tendon is completely gone, but it's a little harder to imagine the absent inferior in actual amounts.

 

I will report in next week.  In the meantime, it's at that point in the north where you are seized with the urge to hurl all the hats and mittens and earmuffs and boots and scarves out into the driveway and run them over repeatedly with the car.

 

Annie        

There WAS a blizzard, but it happened before my appointment and then again after my appointment, so I got there and back OK.

 

There will be a change in the right lens of my glasses (operated eye) because the healing has shifted the eye, and the process took a little longer than expected.  The astigmatism correction isn't in the right place, but that will be easily fixed with a change in the rotation in the lens to match what the eye did.  Interesting that I thought it was more the left lens that wasn't right--but the brain does funny things sometimes.

 

There is a choice to be made with the left lens.  The new one that I am currently wearing is quite a bit better for near vision and that's really important to me.  It isn't quite as sharp for far vision, but it is still good--probably combined with a stable right eye, very good.  The left eye requires a stronger correction, so it's always a little hard to get everything perfect.    Also, it wanders.  I will give up a little, if I have to, to stick with the progressive lenses. 

 

  Dr. K suggested that I wear these (new) glasses for another three weeks.  He will then call me to see what changes, if any, I would like in the left lens.  Will it be to continue with this new prescription, or change back to the old one?  Right now, I think the new one is going to be the better choice.  He will also make the prescribed change for the right lens at that time.

 

Everything else is very good.  No motion at all, no spasms, no diplopia at near or far gaze with the glasses on, and when I take them off, it takes just a few moments to adjust, now.  The eyelid, which was a little weak at first, is now strengthened and feels normal.  This is all pretty amazing.  That amazing-ness would take far too many paragraphs to express, I fear.

 

We had a chance to talk a little.  Dr. K. was explaining to me about the superior and inferior obliques and how antagonist and protagonist muscles work.  This appears to be central to the surgical process that he uses.  It's interesting, and he explains it well since the intricacies would be far far over my head.  I forgot to ask how much of the inferior oblique he took along with the S.O. tendon,  but he did draw it out on the eyeball diagram I had taken along previously, so I can see that it was a nice little chunk.

 

As of now, it doesn't look as if there will need to be another surgery.  That is nice to know, though if I had needed another to get these results, I think I'd have done it without too much worry.  DR. K said that it would have been a need to adjust the lateral rectus in the right eye--but with the prisms being so successful, we likely won't need to go there.  I guess he tries to do the all of corrections in the same eye if possible.  But he avoids over-correction if at all feasible, and that's good.  I guess over-correction can be a real pain. He had told me earlier that it was about a 50-50 as to whether the procedure would take one or two surgeries.  Good to be, so far, in the one-surgery group.

 

Happy news, indeed.  De-wonking brings many excellent changes.  I am just hungry for reading and more reading, so at least for awhile, I don't plan to be very productive.   There's so much to catch up on!

 

Annie 

 

I'm checking in with a March report.  This is time to wish everyone: Happy Spring, and B) for us in frozen tundra-land, some sign of spring.  Like a REAL sign.  Maybe , or something.

 

Anyway, I did have the new lens put into the right side of my new glasses.  This was an adjustment to the astigmatism correction, necessary because my eye had continued to heal, and had rotated in the process.  Yes, the new lens does help quite a bit.  Now, I think I depend more on my left eye for near vision (fewer floater problems) and my right eye for far vision (crisper images.)  When I am out and about doing my normal things,  the eyes work well together.  I notice the convergence becomes better as time passes.  There aren't any problems with diplopia except for a few minutes when I take my glasses off, or before I put them on in the morning.

 

Whenever any changes are made, I do notice something interesting and somewhat creepy.  Since there is still a SO muscle floating around up there in my head, it seems to react to changes in odd ways.  When I first got the new glasses, I wore them for a few days and suddenly developed some strong fasciculations in the right (SOM side) brow and lid.  Of course, I panicked at first, but the eye did not move and the twanging stopped after maybe five days just as suddenly as it started.  It has not returned.

 

With this second change, after a few days, there was that feeling of pulsing and pressure (no pain this time) behind the eye--the sort of thing that used to announce that a particularly bad spell of SOM was brewing.  Of course, I had to check that eye about 200 times to make sure it wasn't moving.  It wasn't.  But having muscles heal, re-group, and create odd sensations can be unsettling.  Juds has mentioned some of that kind of thing, and I am so glad she did.  It kept me from getting anxious to the point of over-thinking the whole thing.  It seems logical is that the SO muscle--like any body part--is going to have to react to the insult of being surgically cut.  And no matter where the cut is, it will try to heal itself. It's almost like a phantom limb thing--you can feel the pressure, but it doesn't result in any movement.  At least for now, it hasn't. There haven't been any unusual sensations now for several days.  That's not only nice, but reassuring. Probably there will be more peculiar feelings from time to time, which I will report when/ if they happen.

 

Interestingly (I think) the peak of those odd sensations coincided precicely with the full moon and vernal equinox thing.  Tht's always been one of my worst times for SOM and for spinal nerve uproar.  I don't mean to sound like I go out and have seasonal ceremonies in the deepest woods, but I do believe those pulls and pushes that nature sends us periodically do things to our systems. 

 

I am not totally in love with the left lens in my glasses, but Dr. Kushner has called twice to check up on my progress and we have talked about it.  We decided to leave it as is since it takes a fair amount of time for eyes to be settled after fairly large differences in corrections are made.  True, what bothered me a lot with that lens a couple of weeks ago is much less noticable now.  My lenses can be replaced for free up to a full six months after they were originally prescribed.  So, I have plenty of time to wait and see if this is going to be the best corretion, or if we want to tweak it again.  No hurry.  As Dr. Kushner says, "You know where to find me".   Also, I have decided that I like these new glasses frames a lot now that I've had them for awhile.  Ah, vanity.  It does not grow less with age!

 

When we talked last time, Dr. Kushner said that having been urged by me and two other patients, he has definitely begun the process of collecting his data and will then publish his experiences and findings specifically with respect to surgical correction of SOM.  He will work with a colleague to get things put together and then this can all be referenced by other physicians.  I'm really glad about it because anything that adds to the body of knowledge is going to help all of us.  We are such an orphan group that it takes some real caring and interest to address our issues. 

 

I did ask Dr. Kushner if he thought that SOM was really as rare as we have been told or if it is just under-reported.  He does not think that under-reporting is really a problem, and that it is, indeed, rare--especially in the absence of a documented head injury.  However, he is convinced that it is a true and life-altering disability, and that it deserves study and attention.

 

And that's it for now.  I will add-on anything good, bad, odd, delightful or un-nerving if and when it happens.   

Annie,

 

I’m glad things are progressing well.  I too do the mono-vision thing.  I wear a contact in my left eye for distance and I do not wear one in my right so I can read.  It took me a few weeks to adjust but now it’s fine.  It’s amazing the way the brain takes over.

 

I had lasik surgery in 2001 to correct my astigmatism and my vision.  I was a -850 in both eyes.  Considered legally blind.  The lasik went well but could only correct my vision to -125.  (Which was still a blessing.)  But it did push me into reading glasses right away.  So they tried the mono-vision thing and it worked.  Hang in there it’ll get better.

 

Ps- the play area for Belle may be the way to go.  We’re going to give it a try.  I’ll keep you posted.

 

Just an update.  It has now been almost six months since my surgery.  That's hard to believe, but it's true.

 

We are still working on exactly the right prism corrections in the left lens of my glasses.  The right side is fine, now.  For convenience sake, the adjustments will now be finished by my local pediatric ophthalmologist.  That works nicely because he and Dr. Kushner have worked together, and have an excellent relationship.   And since my doctor here is about 50 feet away from the optical place that does the glasses, it's going to be a lot easier to finish the tweaking of the prescription.  Dr. K has explained all along that this can be a delicate process--not too much, not too little, and that the perfect balance WILL be forthcoming.

 

In the meantime, I can wear my old glasses with a stick-on prism for help, and see without any diplopia and with minimal eye fatigue.   So, while I'd love to have those lovely clear new lenses are shined and ready to go, patience is a virtue.  It is a lot easier to be patient when your eye no longer wonks.  Virtue?  Well, I will always be working on that.

 

There is no movement in the SOM eye.  There are some feelings, still, that is is ging to start up, but those are explained by the fact that the SO muscle is still active even if it can't move the eye any more.  (This has been an aftermath in three of Dr. K's SOM surgeries and just involves a particularly obstinate SO muscle.) Slowly, as it finishes retracting and the area around it is filled in with tissue, the healing process becomes completed.  The sensations are much less as time passes, and should simply go away at some point.  They don't cause me any difficulty.

 

That pile of books I have been "meaning to read" are finally getting read, sewing projects are in process, gardening is happening without me falling flat into the daffodils (at least not as often), and watching TV and movies and the world in general continue to be a treat.  I feel as if I am no longer a secret hazard on the highway. This whole journey has been worth every twist and turn.  (And twitch and wonk.)  Every day, there comes a momet when I am just shocked that there isn't any SOM to spoil or complicate things anymore. 

 

I will report in when those cute purple glasses are finally exactly as we want them to be.  In the meantime, no complaints.  I did try to put some "Thank you's" into words for Dr. K.  I just hope he knows how very much those mean.  I'm still a SOM person.   I'm just one who is lucky enough to  be de-wonked. 

 

Annie 

Annie,

 

First of all…we are all VIRTUOUS women, no matter what anyone says.  I am so happy for you that things are going so well.

 

I seem to have gone into remission for the moment.  They have weaned me off the Nortryptalyn (sp) and nothing has come back for the moment.  I too, like you feel like some are about to start but they don’t quite make it.  I fool myself into thinking that I’m willing them not to come back.  I’m sure that’s not true, but hey…I’m happy in my little world.

 

Enjoy your books, sewing and movies and go outside and enjoy the beautiful spring weather and flowers.  Of course they’ll be fewer flowers for you to see since you’re not seeing two of them anymore. (sorry bad joke)

 

Have a great weekend!!

And, Cindy,  you ENJOY your remission.  I know the "willing it away" feeling.  I kind of think it works sometimes!  Maybe it only works for truly virtuous women.    Thanks for your good comments.  I love 'em!    Especially the two-flowers-for-the-price-of -one theory.           Annie

It finally happened.  Four pairs of glasses later, and everything works.  Fantastic!  Hoo-ray!

 

It took some doing, but I now have progressive trifocals with a stronger far vision correction in the left lens (-3.50) than the right (-2.75) , similar corrrections for near vision in both lenses (+2.50), different corrections for astigmatism in each lens, and prisms.  The right lens has prism corrections of 5 base down and 2 base in, and the left lens has corrections of 5 base up and two base in.  It's close to the amount of prism that a lens can comfortably hold but it works.

 

My only real concession is that I can't have my nice super-light frames becuse they can't drill these lenses.  But that's not a lot to fuss about.  And, of course, when I take the glasses off, I have diplopia for maybe five minutes or so.  But I wear glasses constantly (really couldn't cross the street without them) anyway, so I hardly notice.  I thought all these prisms might make me look like I was wearing those odd fish-bowl glasses.  but these look totally normal.  The left lens is thicker at the top and the right one is thicker at the bottom.  But you have to take them off and examine them to even figure that out.

 

With the glasses, my vision measures a perfect 20-20--maybe even a little bit better.  There is no diplopia. I have been exceedingly fortunate to have had practically no pain--just the infrequent twinge of a still-healing nerve. Certainly, there is about 99% less pain than there was with the active SOM.

 

Glasses are not cheap--especially when you add nice super light lenses, no-glare stuff, and all the things these lenses need to hold.  But I was surprised to find that adding the prisms was only $40 more per lens--and otherwise, the cost would be the same for a good pair of glasses with cool frames.  So, today, I took the big step and ordered prescription sunglasses--which I really need--and knew that now we can get the right correction.  That is, if everything gets put in the right place.  It should, but if it doesn't then we just get it redone until the sunglasses work as well as the regular ones.

 

I now see as well as I ever have.

 

The SOM movement in the right eye is no longer there.  It's gone. Sensations of superior oblique muscle movement up there in my head behind my eye become less and less as time passes.  Every few days, there's a little of that old familiar tugging sensation--but there is no twitching or wobbling or tortion at all.  I am still not used to stillness--blessed stillness--or remembering to keep my right eye open because there's no reason to close it.

 

I wonder if this will be the last chapter except for a quick update now and again in the "Annie's Surgery" thread.  I'd only want to add the usual caution--every patient is different, every set of eyes is different, doctors have different techniques, and results are never guaranteed.  I waited until I just couldn't handle the severity and constant nature of the disease, and had begun to make major lifestyle changes because of it.  It was a long wait.  But things lined up and worked well in my case, and I hope this offers some hope to those who are seeking the best of help.  It isn't an endorsement to go out and have an operation.  That's a huge and very personal decision. But it is an endorsement to advocate for yourself, keep seeking excellent treatment, and do whatever is best for you in managing this oddball (excuse me  ) thing called SOM.

 

Decision day just happened when it was time.  It was late July of last year that my mind was made up--and ten months until I could put my classy eggplant colored glasses on and sound like a totally manic nut-case of joyful effusiveness right there in the glasses department.  (Which I did).  Support from members of this site has been beyond valuable.  My gratitude is profound.

 

I'll see you all in other threads.

 

Annie

 

 

There simply could not be better news, could there!!!!  It has been a long and tortured journey for you, but you have come through it so much stronger than when you began.  Anyone who would take the time to read through all of your posts, beginning from the time you joined here (although, do any of us really have that much time remaining in our fleeting but brilliant lives?!?!?!?Hah! Sorry, I couldn't help mysef!!!!) can see that so clearly.

 

I have never, ever encouraged anyone to follow any treatment path, and I never, ever will, but I am safe in recommending that your personal journey is absolutely one to be admired and emulated.  Certainly, that is what all of this is about.

 

Perhaps the best part of all of this is that you and your grandchildren can now drive into your next adventure in complete safety.  And, I fully expect to hear all about them. 

Beep-beep.

 

I have more to say, but will let other people chime in with their own congratulations and comments.

 

Brava!!!!!

Annie,

 

I am so excited for you!!!!   Gotta get to work.  Will write more later.

hi very pleased for you , i am still waiting seen a second docter which confirmed it , and start ed eye drops a month ago so far not a lot of change. however the first doc i saw will do nothing untill a MRI is done which could have been requested a year ago when some of these things started so a bit of a waiting game but very pleased for yuo must be great to get some relief

This is just an update since we are closing in on one full year since my surgery last year. It was a tenectomy of the right Superior Oblique muscle and a myectomy of the right Inferior obliue muscle.  That's all described above and in a post titled "Back Home" (10-31-2007).  It was performed November 29, 2007, by Dr. Burton Kushner MD, a pediatric ophthalmologist with special interest in strabismus and eye movement in children and adults.  He is chief of surgical techniques in the pediatric ophthalmology department of the University of Wisconsin, Madison, and also runs a clinic at University of Wisconsin Hospitals and Clinics, Madison , WI.  I specifically asked Dr. Kushner if I could use his name on this site and he readily said that I could.  He does see new patients.  He has a particular interest in SOM and is writing a paper about it.  I communicated with him by e-mail and  then by phone with his nurse at the clinic.  His information is featured on the University Hospital and Cinics website and is there for the public to peruse.  We are not in the position of sending eachother to specific doctors on this site, but we are able to describe our experiences--so that is what I have done.

 

There's plenty of information on the site about how I reached the decision to do this since I waited quite awhile to join up, and then there was evidently a huge build-up of things to say.  Talk about breaking the dam.   Guess I just never stopped after that.  This thread is pretty much limited to the surgery.

 

Unequivocally, this has been a huge success.  At this time, I have adjusted fully to my glasses and don't even remember (up in my brain) wearing anything else.  Past entries suggest that I was left with some double vision, and that remains true.  I can converge after about five minutes now without glasses, but there is little sense in needing to do that.  I am a glasses on first thing--glasses off last thing person anyway. I have been since I was a little kid. It took some doing, but this prescription is about as good as any I have ever worn.

 

I might have achieved vision without diplopia with another procedure, but neither the doctor or I thought it necessary.  Some patients emerge without any diplopia, but I did have pre-existing strabismus which made things a little tricky. 

 

There is no movement in the SOM eye, and it has been still since I woke up from surgery.  It has totally healed.  With my glasses on, I have no diplopia.  I only need the one pair of glasses since they handle all of the issues with one prescription. Initially, I had some minor weakness in the eyelid post-surgery, and that is now gone.  I also had to re-learn that I needed to keep that eye open since I had become so used to flipping it shut.  I experienced a sporadic sensation of tugging (happily, no movement) behind the eye about two months post surgery as the area around the muscles began to fill in, and the SO began retracting in ernest.  Dr. Kushner reassured me that it was merely a recalcitrant muscle and that the sensations would probably disappear.  (It has happened in a couple of other patients.  Just a determined SO.) That is exactly what happened.  Now, I may have a tiny reminder sensation a couple of times a month--but that's it.

 

Now, I just do follow-ups with my pediatric ophthalmologist here.  He actually did the final tweak with my glasses so I wouldn't have to travel to Madison again to do that.  He had been very helpful in communicating with Dr. Kushner before and after the surgery.  It is nice to be working with physicians who recommend eachother and who work in such a collegial manner.

 

Though I would be cautious about the guidelines established on this site and would not want to stray into specifics about what any member ought to do, or the intricacies of my particular eye surgery (happily left to the kind doctor), other questions are welcome. I borrowed heavily from the strength and experience of new-found friends here and would want to offer the same.  Juds' openness about her issues is my model.  The choice to have a surgical intervention is definitely a major thing to do, and guarantees do not exist.  My experiences are as different from yours as are our fingerprints.  But if there is good information to pass around, we should do that.  This is mine.

 

Annie

Correction:  (Post debate brain freeze.) Surgery done in OCTOBER  2007.  Day before Halloween.  Good thing.  I looked the part for a couple of weeks.   Annie