Hi Everyone,

 

Just a quickie to introduce myself.  I am 34 yrs old, and was diagnosed with SOM 1 and 1/2 years ago.  I had received Botox injections in my forehead, side of my head, and neck to see if that would help my migraines.  About one month later, I was working out at the gym and took a break.  I sat down, and someone approached me.  When I looked up, my right eye was spasming.  I hoped it was the Botox, but a year later, all the specialists have ruled it out.  I tried tegretol with no results other than feeling awful.  I have also upped my magnesium, vitamin B12, and fish oils, but no real response.  I haven't had a remission, and I cannot look straight ahead at a computer screen w/out fluttering.  My husband knows my eye is bad b/c I tilt my head to the left to stop the fluttering.

 

Question:

I have read the posts about the surgery, and it seems that glasses become a necessity.  Is this true?

 

Also, does anyone know of specific specialists in So. California?

 

Thx.

Nicola

Hi, Nicola.  Welcome to the flapping, twitching, winking crew which populates this site.  They are VERY nice people.

 

As my doctor explains it (the one who did my surgery) unless you can achieve a near-perfect line-up once the superior and inferior obliques are disabled, yes, there is likely to be some diplopia.  Some requires the use of prisms, and some might be accomodated by the person getting adjusted to it and learning to fuse. This might not be the case with the type of surgery that goes in and treats the "neuro-vascular" problem that seems to show up for some people.  I didn't want that anyway so know little about it.   I thought it was too risky and my doctors don't do it. Keep in mind that there are several different surgical techniques, so I wouldn't want to suggest that mine is the only solution.

 

Honestly, if I were not so nearsighted and didn't have all the other eye stuff going on as well, I COULD see post-surgery without glasses until my eyes get fatigued--usually later in the day.  Then, it's too much strain to try to fuse into one image.  I do have a little diplopia when I wake up, but it goes away pretty fast.  And it goes away immediately when I put my glasses on. The prisms contribute greatly to reducing eye fatigue and strain, so I just got myself some cool purple glasses with  new prism configurations in the lenses.  They look nice--not thick or strange or googly.   They take care of the diplopia and a bunch of other things.  It's amazing how much they can put into one lens these days!  I'll invest in sunglasses once I am sure this prescription is right.  (It takes a little tweaking.) 

 

Since I wear glasses 24-7 (well, minus sleepy time)  anyway, it was a no-brainer.  As far as I am concerned, any trade-off short of having a new eye grafted into the middle of my forehead was a great exchange for SOM. 

 

 I was just reading about prisms the other day and there seems to be some type of contact now that might address a need like that.  I didn't look farther because I can't wear contacts--never could.   It might be a good thing to investigate for folks who can wear contacts and who don't want to depend on glasses.

 

Juds is dandy with ideas about where to find doctors.  Mine is in Wisconsin at the University Hospital--a little far for you to hike!  (Especially in 78 inches of snow.)  Glad to have you on board!              Annie

HI Annie,

 

Thanks for the e-mail.  I can't wear contacts either.  I had Lasik surgery years ago to fix my vision, and it changes the surface of your eye so contacts don't work.    I will have to enquire further with Juds about what she means on the SOM info page about,

 

 "There are many doctors who believe that simply touching or moving around in the location of that juncture can affect a resolution of SOM symptoms, and that the actual surgery is an unnecessary addition to possible treatment. "

 

Do you know if this would be treating the "neuro-vascular" problem? 

 

It is frustrating b/c the specialists that I have seen here pretty much just stay take drugs or live with it.  I have had so many MRI's.  (I guess it is nice to know that I don't have a brain tumor, or MS), but still I read that with SOM, it may be something resting on the trochlear nerve.  I keep asking doctors if they see anything in my MRI, but "No" is the answer.  I don't even know if MRI's are specific enough to see this.  I also constantly hit walls trying to research SOM b/c the articles are all in medical journals and have to be purchased.

 

How bad was your SOM that surgery was the best option?  I read on this forum of people who have 12-15 episodes a day.  I see that as good, my eye spasms pretty much all day depending on if I am looking straight ahead or to the left.  I constantly have to tilt my head to stop the movement.

 

Have a great day and I will as Juds about specialists in So. Cal.

Nicola

Hi, again, Nicola,

 

There are some past posts about that type of surgery--look in the 2005-6 sections.  Juds  could give you a couple of names to look for--though there was some well-directed controversy about the posts being awfully medical for a past member of this site to be sharing.  (I thought so too--though I was only reading and not posting at the time.  I still wonder what took me so long to join.)  However, there is some info back there on the neuro vascular thing.  I think we might have some links in the side-bar of the website too, though I haven't checked for awhile because I ruled that operation out.  It is a procedure that has been done so infrequently that it wouldn't show up much of anyplace accessible to us lay-folk, and involves some pretty dramatic and fancy surgery.

 

There are some good general articles available to us--again collected by our primo-researcher, Juds, and you can find them in the side bar.  They do help with the education aspect of what the heck this thing is anyway and how the heck it operates.

 

I had been diagnosed about 15 years ago with SOM.  Maybe more.  I'll check with my doctor because I can't remember. It followed the course that so many have had--episodic at first, and building over the years to more severe, then pretty much constant, including pain, pressure, diplopia, and all of that.  Yours seems to have hit and never left.  Bummer.  Anyway, I reached a point where something told me that I was not getting any younger and that if I wanted my retirement to be pleasant and fun as it is supposed to be, SOM was pretty much ruining the chance for that.  I couldn't really count episodes by the time I had really had it--it just was not going away this time.  I was very worried about being a hazard on the road, not being able to read, going on trips and seeing nothing but moving scenery.  Like you, I had my head practically glued to my left shoulder--achy-breaky neck.  I was doing most things with one eye closed. The day came when it was time to call the specialist that I had seen twice before over the years--a colleague and teacher of my own pediatric ophthalmologist--and get serious.  I had the surgery at the very end of October.  You have probably seen my site and also deduced that being shy verbally is not one of my handicaps.  But what the hey--I love to write and always have.

 

Since so often it seems that people who have had surgery kind of disappear from the site and we never know whether they lived happily ever after or just threw in the towel and went and hid under rocks because they were disappointed, I think it's important to stay active.  Plus, I wouldn't want to give up the contacts.  So that's it in a nutshell.  (Literally a nutshell.)  And awhile I am HOPING with all my heart that this fix is permanent, I'm still just a bit hesitant to open my right eye in the morning to see if there is any movement. 

 

My doctor told me a last week in a phone call that two of his more recent SOM patients and I had convinced him that he needed to take his research and experience off the back burner, move it to the front, and publish again.  He does have a good deal of experience with this and more interest in it that a lot of other doctors, and his viewpoint--added to others-- will be helpful as people make choices about whether they want to try for a surgical correction, what is involved, and what's out there to choose from.  Everyone can use information from a variety of physicians and perspectives.  IF they want to go for it.  It's a very big decision.

 

There is so much help here, and there just isn't anything else remotely like it.               Annie