Saturday, February 12, 2011

Ophthalmology vs Vision Therapy

I am breaking my promise here not to write anymore. However this is for a good cause.  
There are so few blogs about adult Strabismus that I fear people are getting only one side of the story on surgery vs. vision therapy. I edited this post on May 1, 2011.  Sorry it is long, but my hope is that it's worth the time it takes you to read...

My purpose in writing this is to encourage people to be as in formed as possible when it comes to weighing the options of surgery vs. vision therapy.   If you choose to search the web lean towards the sites that are .org's or .govs.  These have more credulity. Reading personal experiences on blogs are nice but, including mine, they are PERSONAL experiences.  You will have your own.  Just make sure you are educated by people who really know the science behind this eye disorder.

I have only heard about VT this past year - after all my surgeries.(4 surgeries - 8 procedures and FIVE cortisone trochlear  injections) Frankly, I was afraid I took the easy way out in having some one else fix it and someone else pay for it. ( although my deductible is HUGE) It made me question whether I was just lazy and didn't want to do the hard work to "fix myself" with therapy.  Was it my fault? Was I just a weak person for choosing surgery? I just didn't want to work hard to fix my problem?  That's what led me to ask this orthoptist questions about VT.

One blog mentions the authors opinions that Ophthalmologists do surgery for cosmetic reasons.  That is one view point.  Just because it is on the internet does not now make it a fact. That would make an ophthalmologist a cosmetic surgeon.  Which they are not.  From my personal experience how I look is the least of my problems. Surgery for me was critical. I knew I was soon to loose all single vision.  I had an inferior oblique that was too long. (we only learned that IN surgery)   No amount of exercise could change that fact.  I had a head tilt all of my life.  With one 3 hour 'nap' (surgery) I wake up and my head tilt nearly gone.  My neck pain is gone.  That is NOT cosmetic.  I woke up with depth perception.  That is not a cosmetic result.  That's a functional result.  Least of all, I don't see double anymore.

Vision therapy (VT) verses Surgery is one hot topic apparently in the 'eye profession'.  Keep a clear head when talking to Dr.'s and therapists.  Does it feel like a sales pitch?  Does one profession completely put the others down?  Maybe you'll agree, when a person is truly in the right, there is no need for putting others down.  You should clearly understand YOUR eye problem first.  Questions to ask; "Do I have a muscle weakness, or do all my eye muscles work equally? I personally, had a 4th Cranial nerve that wasn't working correctly, so no amount of exercise could bring back the nerve to functioning correctly.  What is YOUR situation?  If you do not clearly understand what your problem is how can you understand how to treat it?  Really good Doctors let you ask any and all your dumb questions and they would never think you dumb for asking them.
According to one orthoptist there are two types of Strabismus.
1):  there is NO obvious muscle weakness; the eyes move normally in all directions, they just don't work together normally. Usually this type develops in early childhood and is NOT associated with double vision. Some unfortunate souls develop double and it can be tricky to treat.
2): There IS a muscle weakness (various causes, various types and combinations of muscle weakness) and the eyes do NOT move normally in all directions. When you have this type (as I did) the muscle imbalance needs to be addressed in order to get the eyes to work together normally again - this involves either i) repositioning the eye muscles themselves or, ii) moving the double image using prism glasses so that it can be "fused" by the brain with the 'real' image (not possible in ALL types of double).

Something I learned this past two weeks:

Where VT (vision therapy) comes in: VT mostly tries to re-train the brain in how it processes what is seen. Occasionally it will claim to strengthen the muscles themselves, but i think even the most outspoken VT proponents wouldn't claim to be able to re-charge a weak/underacting nerve!
Now, if you have normally moving eyes that are out of balance the whole idea of VT has slightly more credibility than if you have non-normally moving eyes. As far as I understand it, no amount of VT in the world will make a weak / paralyzed nerve / muscle suddenly start moving / acting normally again.
SO, in my case the eyes needed to be mechanically re-balanced so that the images from each eye would line up with each other and your brain could then stand a chance at fusing them into  one 3-d image. (Prisms can work to optically relocate the double image but this does NOT work if you see a twisted / tilted image (which I did have) ... surgery is the main treatment option in that case)

Questions to ask your doctor's and therapists;  Well, there are endless questions if you are me, just ask my poor eye doctors.  I never stop asking questions.  But if you are considering vision therapy or surgery, why not ask each professional, why do you feel your approach would be superior to this other approach?  For instance in talking to a surgeon: " why do you feel VT would not work in my case?"  In talking to a VTherapist maybe ask them; " Why do you feel surgery is not the answer?" Go home and think about it.  Does their explanation make sense to you?

It is a valid question why insurance would cover surgery and not vision therapy.  It should raise a red flag or at least a yellow one that says "Proceed with caution"  Do your own research and not on Wikipedia.  My last surgery was complicated and cost $21000. or so.  So I don't think they are taking the cheap way out.

Insurance companies must feel surgery is a more stable, predictable out come.  Also consider, will vision therapy UN- suppress some suppression you've been having? Great!  Maybe it can.  But what is the alternative?  Both eyes working but not necessarily together?  When that happens you have double vision.  I'll tell ya from experience.  Double vision isn't necessarily better than suppression.  Much more upsetting.  There are no guarantees that you will move past double vision into single vision, and how long might that take?  Make sure you are not trading one problem for another. Some times the solution can be worse than the problem. This is a huge concern that surgeons have with VT.

Depth perception is not someone with misaligned eyes enjoys.  Will you get that back?  I hope you do.  But I don't know if I would put all my chips on the table just for that.  Why do I say that?  Because I didn't have it for 36 yrs. and you know what?  I got along just fine.   I didn't feel like I was 'suffering'  because I wasn't.  Now I think I have it back but you know what after the first two months you forget you have it back.  (until you get in front of a 3-d movie -and it is really really fun-  but that's like 3 times a year- you can have a full life with out seeing all aspects of a movie)

Maybe this is cold and harsh reasoning.  But I am genuinely afraid of people not using BOTH eye doctors and therapists.  Why can't every one play together nicely?

My blog is simply to log my journey's ups and downs of this amazing experience. Writing is like therapy for me, so If you can learn something from my experience, great.  However, it is not my intent to teach something here.  I just want to encourage ones to do their own research from legitimate sources.  Stick to the .org's or .gov. websites you'll fare much better.  I wish for everyone to have the success I found.  I lost my hope for many years and now have it back. Best wishes to you!
Greta

3/31/13 found this. Might be worth a readhttp://quackwatch.org/01QuackeryRelatedTopics/eyequack.htmlhttp://quackwatch.org/01QuackeryRelatedTopics/eyequack.html

26 comments:

Anonymous said...

Great post. I'm happy that this surgery worked out for you.

Kee Kee 琦琦 said...

Hi Greta, I came here to your blog after seeing your reply in Heather's One Eyed Girl's.
I am a Malaysian Chinese girl aged 29yrs with Strabismus from birth. I had 2 surgeries done so far, the first was when I was 3 and another more recent - in 2008 (I was 26). but none of them worked. This recent procedure had me very disappointed with the doctor - I would call it almost non-ethical (maybe it sounded too serious but that's what I thought).
And so my mum is discouraging me from doing any more surgery, thinking that there is no more cure to my condition, and also worrying that I will be risking my eye sight for it.
I dont think anyone in my family would ever understand how I feel over these years.
While I think I know that I needed another round of surgery (from a good surgeon, as the orthoptist mentioned that mine is sort of complicated and the angle is misalignment is huge >70 degree). But it seems hard to get a good surgeon here in Malaysia. while I may not be able to afford treatment in the US just yet, I think there's no harm to get to know. And it's amazing knowing that you've done 8 procedures and finally got your straight alignment. Just wondering if you still remember how much the procedures cost? My email is gohkeekee@gmail.com if you don't mind. I'd love to speak to someone who understand but it's just tough here. Thanks.

Greta G Weisman said...

Dear Kee Kee,

I really feel for you! I posted my reply to your email.
Do not give up hope. I did for a while and now I have it back and hold onto it with both hands! Don't let go of it!
Ggw

dancilhoney said...

My lazy eye wasn't diagnosed until I was 17. It doesn't show because my eyes track together OK -- I don't have the cross-eye thing, just the lazy eye. Read : natural lazy eye cures

JLG said...

Hi Greta,

I have a little 9 month old girl recently diagnosed with strabismus. My question to you is this: How do you find out what the exact cause is, meaning whether or not it is a muscle problem or not, and how did you find out it was a cranial nerve? We started patching therapy now, but was wondering how to find out exactly what's causing it to make sure we aren't wasting valuable time if patching won't work. Thank you.

Greta G Weisman said...

In Response to JLG. First off, thanks for your comment.
I passed your question on to someone I think could offer a better answer and am waiting to see what they say.
But in MY non professional opinion, you just asked the million $$ question. How do any of us know we're not wasting our time? Looking back I feel I wasted 10 years on a bum eye surgeon. I wish I had got a second opinion and asked more questions.And followed my gut instinct! So in my non professional opinion, and how I live with all my medical problems, I do a lot of reading and ask a lot of questions and I try not to act hastily. And I do a lot of praying. In the end, we all do the best we can with the information we have. I would be sure you are speaking to a reputable, respected person in the field of Strabismus, and don't be shy to go to a completely different clinic and get a second opinion. My boss is going through the same thing with her daughter and her strabismus. So I feel for you. Please feel free to email me. Sometimes we just have to TRUST even when it's hard.

Greta G Weisman said...

JLG - PLEASE EMAIL ME AT Gretagail73@Gmail.com as I have more specific things to say to you.

Bill said...

Thank you for your posts. After 20 yrs. of prisms, I consulted a specialist to see why it just wasn't working. Cranial nerve IV palsy was diagnosed and surgery recommended. Am just beginning the search for info concerning therapy vs surgery.

You've been a help, as you've had the same experience. What I hope to avoid is repeat op's. such as yours. The surgeon seemed confident no repeats would be necessary as he has never had to do that. Seems a bit far-fetched, thus the reason for researching this.

Greta G Weisman said...

Thanks for your post Bill. If it's your first surgery. Your chances are VERY GOOD. But do your research until you feel good about it. Mine probably needed readdressing because first surgeon didn't address the ghost images tilt. My second image always tilted. That was overlooked initially the first 3 times. :) best to you! Please let me know when you have the miracle of single vision. It's the best!

Riya said...

HI Greta,
just saw ur blog,,i was studying about vision therapy vs strabismus surgery..my son is 2yrs 10 mnths old n have squint in his right eye,,number is 6..Doctor has suggested him surgery but i m scared of surgeries,,searching if i can get gud vision therapy clinics in Delhi,india and if it really help in his case..

Greta G Weisman said...

Dear Riya, I've been thinking about you since you posted. Wondering how to respond. That's the trouble with me, I'm not a doctor. So feel very ill equipped to help but doesn't mean I don't want to. SO hate to misdirect any one! Especially a parent of a precious child. You need to talk to the doctor until you have peace with all the answers. Ask the doctor all the hard questions. Especially about vision therapy. Continue to search for who is leading the field in Strabismus research in India. Just don't be afraid to ask and don't give up. Your son will thank you for it.
Keep in touch. Ggw

Greta G Weisman said...

Riya, One more thought. Strabisums doctors do not recommend surgery if your child does not need it. You know that right? That is a mis truth being spread by vision therapist. They also do patching and other things. So if the Doctor is recommending it it may mean he has a weak nerve or something. Just saying. Just because they are surgeons doesn't mean they always run to surgery.

Bill said...

Your comment on tilt caught my attention, as it mirrors my symptoms. Images are diagonally split, with the upper being tilted down to the right. Surgery was scheduled for tomorrow but was postponed due to illness (I came down with a bad cold - bless the Midwest...). My surgeon's credentials are impressive, and he allowed me to speak with several of his patients when asked. If you're interested, I'd be happy to give some post-surgery updates.

Greta G Weisman said...

Bill, I will be anxious to hear how your surgery goes. Please do keep us posted! I live in the midwest too. Email me if you'd like, I'd like to know who your surgeon is. When are you scheduled for surgery now?
Best wishes! Get well soon
ggw

Bill said...

Sorry for the long delay; it's apparent I don't spend a lot of time online...

The new date is Jan. 11th, and I'll keep you posted on results. The new year works out better financially in that I can pre-tax (through a flex spending account) whatever isn't covered. And I'm all for 30% savings. : )

I'll email the doc's info.

Unknown said...

All too often my colleagues gloss over the fact that strabismus surgery outcomes, for the most part, are not very good. If you look at the research (http://mainosmemos.blogspot.com/search/label/strabismus%20surgery%20outcomes) you will note the high failure rates, the need for second and even third surgeries ... and that the long term effectiveness of surgery is not what we would like it to be. Having said that....and as you noted in your blog, for some patients it should be considered a viable option.
Dominick M. Maino, OD, MEd, FAAO, FCOVD-A
Professor, Pediatrics/Binocular Vision Illinois Eye Institute/Illinois College of Optometry

Greta G Weisman said...
This comment has been removed by the author.
Greta G Weisman said...

Thank you Dr. Maino for your comments on this. Do you also have a link to statistics on Vision Therapy outcomes? I'm not a doctor, so could you help us here, isn't there different TYPES of strabismus, some absolutely requiring some surgical attempt and some where VT could be attempted? I don't know. Wouldn't it depend on what kind of strabismus a patient had? Anyway, more information is really needed. Really appreciated your input. Can't believe how many hits this post gets on Vision Therapy Vs. Surgery. People are hungry for more info. Thanks!

Anonymous said...

Hi,
I saw this post after looking for adults blogging about vision therapy (like me). Very interesting. I think also knowing your own vision history helps with your diagnosis. For instance I know I have strabismus because I have lazy eye. I did have surgery when I was younger and all it did was make my eyes track together, however my parents were under the impression that it would fix the problem...

Anyways, I am blogging my experience at http://www.lazyrighteye.com

Thanks,
Shelli

Anonymous said...

Ophthalmology and vision treatment have been connected for several years, even as in some sectors the link is fiercely debated between doctors.

Cataracts

Greta G Weisman said...

Fierce is an understatement at times isn't it?! I think it would be fun to get a surgeon and a VTherapist in a room together n watch them go at eachother. Would make a great reality show don't you think? Just teasing.
Thanks for input Toby.

fiqahlee88 said...

I've struggle so much in life because of my strabismus problem.. how do i gain my confidence back? could u emailed me fiqahazman_88@yahoo.co.uk I'd like to know how much is the cost for surgery so that I could save my money for it in future

Anonymous said...

Interesting post Greta ! Good that you brought up this controversial topic of
Vision therapy. I had a squint myself and got it successfully surgically
corrected 5 years back.  I recently discussed about vision therapy at
length with my
Squint
Specialist
and he mentioned very categorically that there is no scientific
evidence to prove the effectiveness of vision therapy. Since then I have stayed
away from reading/ researching about it and would advise others to do the same.

Greta G Weisman said...

Sorry I didn't see your comment til today! I'll email soon. Wishing you the best - g

Unknown said...

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Ila said...

I firmly believe that vision therapy is NOT always the way to go. VT is a very controversial topic but one that must be addressed, thank you for doing so, Greta!