Nicola, if you are going to consult at Johns Hopkins, we are familiar with Dr. Neil Miller,who has treated several dozen patients with Som, although he is not the only excellent resource at that facility.  He is part of the Wilmer Eye Institute there.

 

As far as those of us who have elected to have surgery, there truly isn't any way to know ahead of time, or right after surgery, how severe the diplopia might be or how persistent it might continue to be.  Only your doctor can have any idea of what results you might have from your, very individual, surgery.

 

We now have seven or eight members who have had surgery, most of us within the past year or so.  I'm sure that Annie and some of the others will be by to chat with you.

Yup it is Dr. Miller.  I am going to see if there are any specialists in California.  He suggested that anyone that can do strabismus???? surgery could do it.  I think if my insurance covers it, I will go to Maryland.

 

Do you have any idea about having to wear glasses forever after the surgery?

 

Thx.

Way back in the day Dr. Miller was the guy.  This was because he wrote some of the earliest, most accessible reports/articles.  For a long time, he and a few neuros in Japan and the UK were the most prolific writers on SOM.  Germany, too, I think.  Jeanie pulled together most of that information in the early days, and if she finds a free moment she will pop in to expand on that.  My doctor was also an early author on the subject of our disorder.

 

Speaking of my doctor, he is a truly amazing doctor and I like, admire and respect him for reasons too numerous to mention.  I am also likewise enamored of my neuro-surgeon and am quite pleased with the results of my surgery.  I've always worn glassess, from age six or so, so it seems like forever now.  Because I opted (truly campaigned) for a more radical surgery, I knew, going into it, that it would result in permanent diplopia.

 

There was a tiny chance that this single surgery would give me good, usable vision, and I was, therefore, willing to take all of the larger risks, some of which were pretty darn scary.  I had my surgery last year, July, and we are giving it lots of time before we decide if any further surgery is in my future.

 

So, now I have all kinds of glasses.  I have tri-focal lenses for driving and general wearing when I am out and about.  There is a tiny, really, really, tiny portion of the lenses that are clear for reading, but because of the diplopia I still have to close or occlude my SOM, right eye.  When I want to do some serious reading or when I need to see the terminals at work I have reading glasses that have prisms in the right lens to pull/manage my eye into binocular vision.  They work fine, but there is still some head bobbing when reading.  Sometimes.  It depends on size of the material, the type font size and how tired I am.  I could spend money, which I really don't have, on glasses for my computer, but use an assortment of glasses from the dollar store in a variety of diopter strengths.  Sometimes I need to stack them (use two pair), but that isn't much of a problem.  All in all, I manage exponentially better than I did prior to the surgery. 

 

The only real problem from the surgery is facial nerve pain.  However, that is an entirely other story.

 

As for having Dr. Miller perform your surgery, you need to know that he cannot legally consult with you because you live in another state.  However, your doctors can without any difficulty.  As I've mentioned, I really like my doctors and am completely satisfied with everything with them. 

 

That said, I was going to try to get to Johns Hopkins for surgery, but my current insurance company was less than impressed with my entreaties to be under the care of a doctor who has done more than forty of this type of procedure.  So, I stayed with my local, in program doctors.  You should also know that they are both esceptionally experienced in treating nystagmus and strabismus, both child and adult, and were confident in their ability to help me, even though they had only done three or four surgeries for SOM between them in the past thirty years.  And, yes, in case you're interested, before I decided to go with them, they knew that I was interested in being treated by Dr. Miller and were completely supportive of that.

 

Depending on exactly what surgical procedures you have (and keep in mind that your surgery will not be exactly like that of anyone else!!) you may or may not need to wear glasses.  If you do need them, you may or may not need to wear them for a long time.  This type of surgery is easily as specific to the patient as any other kind of delicate surgery.  If you need your knee joint replaced, the specifics of that kind of surgery are pretty standard from patient to patient.  However, the mechanics, all the vessels, muscles, tendons and all the rest of that gooey stuff in your head are unique to each person, and your surgery will be just as unique for you.  If you have any doubt of how complex all that junk in your head is, get a copy of Gray's Anatomy and take a gander at all that stuff.  Actually, that book is online, but I don't have access to my saved favorites right now, but you can run a quick search on Google or someplace and find it easily.

 

You know, if you have to wear glasses forever, it's not the end of the world as you know it.  I know that you mentioned that it would be a burden, if not outright impossible, in your profession, so I cannot address that complication.  But, the cessation of all that sickening movement is a blessing that is impossible to adequately describe.  Addi;tionally, there is some indication that there might be contact lens resources that may work for you as well, prisms and all.

 

Surgery is certainly not for everyone, but, for me, the ending of movement gave me back my life.

 

Because of my surgery I can still drive, and that is the only reason that I finally took the risk.  I can live with glasses and the pain in my face.  But, give up my wheels?   Oh, the horror, oh, the humanity.

Hi Nicola.  Glad you found us and sorry you need us.  I'm not sure how much I can add in here, as you are considering surgery and I haven't had any surgery.  Let me tell you my situation and what I know about prisms, and hopefully it will be of some help.

 

I've had SOM since the early 80's.  It has come and gone for years, and has finally come to stay, I think.  The primary symptom I have is diplopia (double vision) and it has become so constant that I had prisms put in my glasses RX.  The good news is it really helps!  The bad news is that when I take my glasses off I'm really blind!  I'm far-sided with astigmatism and SOM, so my prescription is quite complicated and difficult to fill.  Thank goodness I have a great optician and with work, we get it right.  Juds mentioned contacts, and although there are some contacts that can accommodate prisms, they are the old fashioned hard lens type.  The other draw back for us specifically is the fact that we're dealing with the oblique muscles.  Because of this, the prism in your glasses has to be done in both directions!  Such as up and in, down and out, etc.  Probably not a reasonable expectation for contacts.

 

The other suggestion that I would make is to wait.  This is a condition that can come and go.  And for many of us, we reach a point where we absolutely cannot take one more minute of it.  I've been there and actually made an appt. with a pediatric neuro-ophthalmologist/surgeon.  (Un)Fortunately, I had to wait so long to see him, I actually went into a significant remission, and by the time I saw him, I was able to tolerate the SOM, so I decided against the surgery!  Figures.

 

I would also like to say that all of the surgeries are not successful for stopping your symptoms.  Just like all of the surgeries do not result in permanent double vision.  Juds is 100% correct in saying that every person and every eye is different and the results of any treatment are unpredictable.  I do not think, however, that you will find a doctor who can guarantee you will not have permanent double vision.  As a matter of fact, I think most of them might suggest that it is actually more likely to happen than not.  We can do an impromptu pole here, and ask our surgical members what their outcome is.  While it won't be scientific, it will give you an idea of potential outcomes.

 

Dr. Miller is very good and extremely well-known and respected in the the exclusive group of neuro-ophthalmology.  You would do well to have him as a surgeon.  But, there is also a lot to be said for seeing a local doctor, and I believe I would look in that direction before I traveled across the country.  Your best bet on strabismus surgery is a pediatric ophthalmic surgeon.  They do a lot of muscle surgeries on children who have double vision for a variety of reasons, most specifically being "cross-eyed".

 

Good luck.  Keep us posted.  And hopefully some of our other surgical members will chime in here to help you out.  Take care, Jeanie

 

 

Again, I made the eternal mistake of saying pole when I meant POLL!  You would think that during this time in history, I could get it right.  But no.  Sorry!!!!!!!!!! 

 

Sigh, back at ya.

But...but...but...it's the only time I get to use the PollPole that I made especially, and just, for you.

 

At least you didn't ask for a pall.  Ha!

 

Sit down, put your feet up, have some junk food, enjoy a frosty beverage, play with the dogs and go to bed early; you work too darn hard.

Thanks for your input Jeanie.

 

I have already tried prisms in glasses, but they don't relieve anything at all.  In the past two years, I have only had one remission that lasted about 2 weeks.  And unfortunately, because I had lasik surgery years ago, contacts are not an option.  I guess my lens was reshaped, and when I tried contacts everytime I blinked they moved off my eye.

 

I am pretty sure that if my neuro recommends me to Dr. Miller that my insurance would cover it.  I have another appt. with my neuro-opthamologist in 2 weeks.  It is frustrating having him be my go between with Dr. Miller b/c I have so many questions. 

 

Dr. Miller says he has completed 25 successful SOM surgeries without reoccurence.  I guess it would be interesting to see how long ago the surgeries were.  I assume he did both a tenectomy and myectomy, but don't know.

 

I do know that everyone is different, but again, I hope to hear more from Dr. Miller and converse more with my neuro, and get their input on the diplopia. 

 

I used to be a stuntwoman, but can't really continue in this profession with my vision problems, so as much as I would like to delay surgery, I think this may be my only option.

 

I will post any response I receive from Dr. Miller.  I wonder if there is anyone on this forum who has had SOM surgery from him.....

 

Thanks.

At least two of our members have reported experience with Dr. Miller.  I hope that they will pop in to share what they can.

 

I know that we sort of lionize this doctor, and I'm not saying that he doesn't deserve it because I would have liked to have my surgery decision aided by his expertise and experience.  However, it is important for all of us to keep in mind that each person's experience, surgical or otherwise, is unique to that person, even with such an good doctor.  Additionally, I cannot speak for anyone but myself, but I do know that not every surgery that a doctor performs has the ultimate result.  A large number of related-condition surgeries with outstanding success means that there were also surgeries where there was not such a successful outcome.  That doesn't mean that the other procedures were failures, only that they had different results.  That's all kind of redundant, but you know what I mean.

 

I have been as desperate as you are now feeling, and I hope that you remember that I, all of us really, are thinking of you and are supporting you in this part of your journey.  Please don't be discouraged by delays at this point.  Keep us posted, should you be so inclined, on your progress.

Hi there.  I do appreciate everyones opinions, and experiences and I do hope to continue to receive them.  Again, I hope Dr. Miller's patients do come on line and give me their perspective also.  I have been in contact with Dr. Miller, and it seems that he may be lucky with SOM surgeries, because here is his response,

 

"Yes, I have done about 25 patients with SOM, 23 without any issue. One had to have a repeat procedure after the posterior arm of the SO tendon reattached to the globe. Cured after the second op. The other had some diplopia for about 3 months, then resolved."

 

From this, I can't really guess on the "about" 25 patients, but it seems that his success rate is quite high.  I would guess that if he had done more surgeries with different outcomes, that he would also give me this information.

 

I also posed the question to him about the double vision, and whether or not he would think that it would be more common than not to have it after the surgery, and he responded,

"I cannot guarantee that she won't have double vision; I don't guarantee anything. It is a small but definite risk."

 

Perhaps he is just being very positive, and like Juds says, every person is different, and if I eventually do consult with him, then perhaps he will say based on this, that, or the other, then I may be more predisposed to diplopia or not.

 

I have sent him some other questions via my neuro, but it would be great if anyone has had experience with him to pop on and give some advice.

 

Are there any members that have had surgery for SOM, and had it clear up without major side effects?

 

Thanks for everyones input.

After I posted the above, I received this e-mail from my neuro-opthamologist.

 

Dear Nicola,
     Medicine being an inexact science, I can tell you from my experience with eye muscle surgery, there is always a little awareness of diplopia even with the most successful operations. If you are not inclined to wear prism glasses should there be a little diplopia, then you should not consider the operation. If you can continue your work as a stunt person without surgery, it is best not to proceed with an operation. Dr. Miller is an honest physician and will tell you of his experience with most of his patients. He probably does not have a stunt person as a former patient; if you had an accident following his operation, he would feel terrible. You know your problem better than most people who decide to have the operation. It is your call.

I am going to continue with some questions with Dr. Miller. Perhaps he has former clients that would be willing to speak with me.

There are legions, far beyond the scope of this group, who would be thrilled to have such a forthright medical resource.  I hope that you know how lucky you are to have this kind of communication with your doctor.  I also think that you are spot on with your interpretation of the replies from Dr. Miller that have been passed on to you by your doctor.

 

I'm not a doctor, and I couldn't be one if I had a dozen lifetimes in which to study medicine, but, I am smart enough to listen to my own doctors who told me that, when we were discussing the type of surgery that you are considering, that there wasn't any way to predict or reasonably determine if diplopia would result for me.  However, the more severe surgical procedure upon which we settled was nearly 100% certain to result in permanent diplopia.  Just like me to go for the sure thing!!!

 

The only reason that I'm sharing this (again, apologies to the rest of you who have heard all this before) is that, since there isn't any way to know for certain or for not-so-certain that you might or might not have double-vision, possible diplopia remains only part of the decision you have to make regarding surgery.

 

How severe is the impact that SOM has made on your life?  What changes have you made to adjust your life situation to accomodate your symptoms?  We already know that you are a stunt person, which probably means that you are good at estimating risk and potential outcomes.  I'm guessing that you already have greater skills at this kind of decision making than most of us do.

 

Surgery is as life-altering as simply having SOM.  Whatever you decide will be exactly what you are supposed to do.  Sometimes we get bogged down in the details of the process and forget to trust our own inner wisdom.

Hi, Nicola--and everybody,

 

There are lots of great new posts for me to catch up on.  My daughter had an unexpected two weeks off, and we decided that if we didn't go and visit Ireland--as we had talked about for so long--we'd never do it.  So we took the dive, just spent two unspeakably wonderful weeks there, and returned two days ago.  OK, the house didn't get its paint job finished this fall, but you can never take away the memories of a trip like this.  I'd put my $$ on a trip any day!

 

Anyway, I just wanted to say quickly, that yes, I did have the tenectomy and myectomy, and the result was some double vision.  Since it is completely corrected with my prism lenses, and I have to wear glasses anyway, I'm totally thrilled with the outcome.  I didn't see the need to have a second surgery that might have totally resolved the diplopia. Neither did the doctor. And yes, the SOM is simply no longer there.  However, no case of SOM is the same as another so I think all doctors who do treat it surgically will tell you that there are risks and that outcomes can't be guaranteed.  My doctor had done quite a few surgeries, is interested in the research angle that goes along with the condition, and his track record is excellent.  I felt that I was in the best of hands, and had good and very honest communication with him for quite some time before I decided to take the big step.

 

In my case, I can converge without the glasses after maybe 15 minutes--so if I didn't have so many other issues that need corrective lenses, I could see.  But until we got the new prescription right, I did notice that this ability to converge got shaky in the evenings when my eyes got tired or if I was trying to read extensively or use the computer a lot.  With the new glasses, those things aren't a problem. My guess is that I'd have needed--or wanted-- prism lenses after the surgery, at least for part of the day, even if I didn't have the other conditions.  I suppose I could have gone for the second procedure, but since I literally can't cross the street without glasses anyway, it hardly seemed worth the risk.

 

It took a few tries with new glasses to get things working the way they should.  A bit of patience and choosing a glasses place that won't charge you more for a full year no matter how many times you need to change the prescription hedges your bet for getting a good correction.  Now, I only need the one pair of glasses.  They correct the diplopia, the myopia, the presbyopia, the astigmatism, and the pre-exisiting muscle balance problem all with one prescription.   I think that's close to magic. Now, I even have a dandy pair of sunglasses that do the same.  Love them!

 

Now, with jet lag starting to wear off, I can catch up on all of the doings around here.  New people, new babies, new ideas.  But it is definitely bedtime now and I can dream sweet dreams of my Ireland adventure.

 

Annie