Thanks!   The site really looks great.  Good job Juds!   

 

Things have been going great for me.  I had surgery last year, have recovered with no more jumping vision.   It's amazing and my doctor is my hero.  I'm back at work and really enjoy my job.  I feel like a new person with a new life.  

 

For everyone out there still suffering........please inquire about surgery.   It works and will give you back your life.

 

Love to all of you,

Lisa

Hey, Lisa, glad to have you back!!!!  It's like old-home-week around here.

 

I am hoping that you will share your surgery experience with us.   You know, the type that you had, procedures, all the gory details.  Bring 'em on!!!!!!!!!!

Hello, Lisa,

 

It's getting close to a year for me too, and the new life is a great life.  I'm almost forgetting to worry that the de-wonked eye is going to rev up again!  Very interested in your surgery.  The more we know, the better informed everyone is--and that makes for a better knowledge base. Thanks for checking in.  Sometimes it's hard to know if the people who opt for surgery had good results--or just kind of disappeared.  Congratulations on the great result!         Annie

Hi all,

I'm especially interested in how you get to the point where you decide surgery is necessary, appropriate, and better than the alternative.  I had lasik surgery about 5 years ago and it was fantastic, but I was terrified that my SOM would spaz off during the procedure and wreck something.  Fortunately it didn't.  Now I am in the midst of one of the most persistent stretches of severe symptoms and it sounds like some of you have had ever increasing symptoms that finally lead you more intrusive measures.  So I'd be very happy to hear about surgery and how you arrived there.

 

Thanks, Tony

Hi Tony,

 

I suffered with the jumping for about 3 years before I had the surgery.  Tried a lot of different drugs which either didn't work or the side effects were so bad it just wasn't worth it.   I've been to many different doctors....some said there was no surgical options available and wouldn't even consider it.   But then I was directed to a doctor here in Columbus Ohio.....didn't wanna go.....had it with doctors....none of them could help so what was the point.   She could tell I was really desparate for help.  At this point I was off of work on medical disability for a couple of  years and going crazy sitting at home alone all the time.  Let alone with the dang eye doing it's thing! 

 

She had never seen a case of SOM but knew what it was.   She never really gave my surgery a "name".   What she ended up doing was inserting a "spacer" (a little piece of plastic) into the muscle.   She said it was like grounding it.....cutting the circuits so they didn't connect.   It was simple, no pain, short recovery time.   From the minute I could see out of that eye again.....no jumping.   Yes, double vision.  But wearing the glasses with the prism is no big deal to me when you consider the alternative!   Actually the double vision is getting better and better.  I can go probably an hour or so without the glasses and no double but as the eye gets tired it will go double. 

 

Now, the only time I have even the slightest of jumping is if I haven't had enough sleep and I'm really tired.   Even then, it's so little I don't think much about it.  Except for that I need to get to bed early that night! 

 

Anyway, my doc is my hero and I love her to death!   She even saw me during a time when I was without health insurance.   Just had me pay a normal co-pay.   She said she was writing me up as a case study because I was her first case.  And only as far as I know.   But I haven't seen it yet. 

 

I don't know where you live but if it's close to Ohio (go Bucks!) I would highly recommend her.

 

Lisa

Lisa,

Thanks for the quick answer.  Your thoughts are very helpful.  I need to try again with the medical community but all the docs I've seen so far just make light of SOM because they basically seem to have no clue how miserable it is to have it.  The medications I've tried in the past were also more trouble than help.

 

So thanks again.  And, oh by the way, I am from a Big Ten state but I'd say, "Go Bucky" instead of "Go Bucks."  But I always cheer for the Big Ten when they play outside the conference, like for the National Championship, which my team hasn't played for since I was a tike.

 

Take care, Tony

If you want more information from members who have had surgery, Tony, you can look for threads regarding surgery by Annie, myself and a few others.

 

One important thing that you might want to consider is to make sure that you are seeking help from the best kind of doctor.  One choice is a regular neuro-ophth who has lots of experience with SOM.  Your second choice, and one that most of us have made is to choose a pediatric neuro-ophth, because they are most familiar and have the most experience with disorders and conditions that are similar to SOM, such as strabismus and nystagmus.  For the second choice, don't think that you will be sitting in a waiting room full of children.  These doctors, because of their specialty, see patients of all ages.

Hi, Tony,

 

Details about my doctor are in "Annie's Surgery" thread.  If you are cheering for red and white Badgers, then you are in the same state, and the same resources are there for you to check out.  Believe me, no matter what you would eventually decide to do, the checking out part is valuable.  You get lots of information, you are NOT pressured to choose one type of treatment over another, and it gives you time to decide what to do.  Me?  It literally took me about 14 years.  I did try a lot of things--glad I did.

 

Each one of us has a point of being totally fed up.  Interesting that some of us (me included) have reached that point, waited for an appointment or gotten delayed by something else, and then either had symptoms retreat or motivation changed. I am still not totally able to pinpoint what made me decide to call again with the intent to have surgery.  Like really have surgery this time. All I do know is that IT WOULDN'T STOP.  And it was bad, bad, bad.

 

When doctors minimize the drastic impact this disorder has, or give unhelpful advice, or do not seem to take our pleas for assistance or direction seriously, I think we need to start shopping. We have every right.  After all, if I'm going to Best Buy to look at a new PC, I will ask every question in the book, haul along a copy of Consumer Reports, compare prices, browse, and annoy the staff with requests for information that are important to me but definitely disclose my lack of technical skill.  And I think nothing of that.  Then, I'll go someplace else and do the same act until I decide. After all, don't I have the obligation to make a good choice?  But somehow, we all get a little inhibited with the medical stuff, and we should not.  Surely an eye--and maybe your whole life-- is more important than a computer.  Or a refrigerator.  Or a vacuum cleaner.

 

While I did get to see an assorted bunch of kiddie videos over the years, and also could have availed myself of the Leggos found in every office, I agree with Juds.  There are plenty of adults in those offices since many adults have strabismus and other problems.  (Actually, I had those well before the SOM started.)  When I noticed that I wasn't gettting the complementary offer of coffee in the kid's section at my hometown pediatric ophthal's office, I just tracked down the coffee lady, and she doled out my share quite nicely.  At the University hospital/clinic, there were probably about a third of the patients at each visit who were adults--some of them not at all young, either.

 

I'm really happy to see the responses that some members here are getting directly from doctors, or the willingness of doctors to consult with eachother on our behalf.  This was also my experience.  When you get to the right person, these things will happen.  It is excellent medicine, and good humane practice.  A lot of the pediatric ophthalmological specialists are most willing to answer questions and to help us to make decisions without pushing us or being upset if we just are not ready to decide.  If a doctor can't provide the assistance, then he or she--if that kind of good medicine is being practiced--will help us onward in or search and will assist with a referral or information-sharing.

 

This site is our guidebook.   It's really the only one out there.  So haul out your self-assertion instruments, and go looking, I'd say.  There's a wealth of information in these posts and lots of folks who will encourage someone who is out stomping the bushes in search of a doctor who believes that your life is being messed up by a rogue eye. 

 

Annie