Tony,

 

What an awful experience.  I have steam blasting out of my ears and nostrils for you.  For crying out loud.  I hope our good and helpful doctors read this site.  I hope the others do, too.  They will both find themselves here.

 

My first Dr. decided it was stress.  Or possibly my imagination. (Duh.  Life is stressful especially with an eye playing loop-de-loop. And who would dream this up?)  The second said that I should have a Lyme test and seemed generally irritated with me.  That's why I just shut up for a few years.

 

 The third picked it out in moments and called the pediatric ophthalmologist in--and that was that.  So, he took over, and tried what seemed to be reasonable possibilities (Tegretol being one--definitely not my drug.) Happens the pediatric ophth. trained under the doctor in Madison, at the University teaching hospital, who advised me for several years, understood my initial reluctance to opt for surgery--or inability to, and eventually did the magic last year.  I was lucky.  They had no trouble at all working together in my best interest.  Those good doctors get the goldest of gold stars.  And guess what?  They seemed to think it was good practice to talk with eachother!  Happily!  

 

Do you have any university hospitals or teaching hospitals nearby?  Might be worth it to do a little poking around on you own since you aren't getting exactly a dynamic bunch of help at this point.

 

It is a helpless and deflating experience to reach for expertise and at least some understanding, and get a beige and disintrested response.  Dont' let it whack you down.  Start the real fight now.  Maybe the Tegretol will help you since it has worked pretty well for some people.  But self advocacy is good for the soul and for the eye.

 

I was cleaning out the drawer near the TV this week, and in the muddle of stuff, I found a bunch of my paper eye patches.  That brings things back with a jolt.  It was a year ago that I was counting down days to surgery, and systematically cutting patches out of magazine covers.  Ah, a reluctant pirate I was.  When I took that test, it was a different format, and I came out as "Bloody Anne Bones".  Aye, a fearsome name, that.  Avoid my vengeance, ye swabs.  Sounds like a person willing to take on a dismissive practitioner, think ye not?

 

Annie 

 

   

Limping Plank-walking fish feeder??? not very cool!!!  LOL!!! 

 

Sorry you're having a tough time Tony.  I can definitely relate to the frustration.  I was also told, like others have said, that it was in my head.  I am finally in with a good Neuro Opthamologist.  Can't say it's helping me yet - all the med trials -but at least he listens to me and takes me seriously. So important to be acknowledged. Hope you find yours soon. Hang in there.

Kerry

Tony,

 

It was time to update  the "Annie's Surgery" thread anyway, since it's almost a full year since I had it done.  I thought now would be a good time, since you were interested in the information, and my doc was fine with being referred to specifically on our site.  There are other choices.  This is mine.  I believe that I was his 17th or 18th SOM surgery patient.  I was within easiest access to Madison, my local doctor had known this specialist for years, and Dr. K had not experienced any re-attachements with his procedues.  Those were criteria (partial) that influenced my choice.  Questions?  Just holler.

 

Annie

Gosh, if you already have SOM, what's a little blood disease.  What a sissy.

 

 

 

 

 

 

 

 

Bah-da-bum.

 

Yup, I totally agree.  Can't take the mind-numbing, thought-slowing, ADHD-producing, synapse-mushing meds.  I have tried several--mostly of the anti-seizure category.  They didn't work, anyway.  Currently, I have to exist on opiates (4 times a day which is better for me than the long-acting ones) because of spinal stuff, which makes me sound like a really big sissy . But those work OK, and I can fight through the sleepiness I get after an hour and emerge without changing my lifestyle or personality.  Fatigue, I can work around.  Being a medication-induced Froot Loop, I cannot.  

Big decision Tony!!

 

I was just sitting with a couple of girlfriends last night drinking and eating chocolate stolen from our kids halloween bags (bad mother - I know) and saying that I wish I could take a vacation.  I wasn't imagining somewhere warm and tropical - not that I'd be opposed - but what I meant was a medication vacation.  From the Topamax for the SOM which is making me a complete and total idiot and then throw in the percocet and the oxycontin for the back pain.  They'd have a great time with me on Saturday Night Live!!!!! The blank stares, the "what's that word - oh yeah - shoe" type scenarios. 

I'm trying real hard to laugh a little at myself at not just cry about it. 

 

Tony, you have a big decision to make.  I guess there are lots of horror stories with meds but I guess it means that we still have hope that there is a better way to live.  Whatever you decide - I'm thinking of you!!  Kerry

Laughing is better if you can do it, Kerry.  I think medication woes was one of many factors that finally got me into the surgery mode.  Of course, getting older...and older... and beginning to think, "Well, just how long do I HAVE to make my decision about this big intervention?" was another--though a bit hard to admit.  I still think that trying all those meds was a good thing, because how would I have gotten all that data about what to do next if I had not gone through it?

 

However, I do remember a day when I too was trying to do oxycontin and other pain killers and a little diazepan thrown in for seasoning and some new med that MIGHT work for the SOM.  I was merely trying to make a phone call, but this mechanical voice kept coming on:  "If you are trying to place a call, please hang up and try again....." because I couldn't punch the numbers fast enough.  It is pretty funny now, but at the time, I wanted to throw the handset in frustration.

 

Now I use the higher doses of percocet and deal with the ups and downs since oxycontin never gives me a break from the fog--and toss in some ambien and diazepam for night time.  It's not perfect, but it gets me around and keeps me in the driver's seat--literally.  Halloween candy is good for your overall health and wellbeing, too.  Stealing it is a time-honored tradition--so much so that I must now turn to the bags of my grandchildren.  Now that is seedy!

 

I hope Tony keeps us updated on how the long-acting Tegretol works since I don't see that in our medication data.  It would be just so amazing if somebody could stumble upon the magic formula that would stop the twitching without giving you the decision making capability of a fruit fly.  Hang in there, guys.

 

Annie    

What a bunch of wusses.

 

Seriously, I'm surrounded by cluck-cluck-cluckers.

 

I'm totally cracking myself up.

 

 

 

 

 

Seriously. 

Really.

Only you can decide if you want to take this or any other medication.

No sorries allowed.

Be gentle with yourself.

Do what feels best.

Ignore the rest of us.

 As a formal member of the cluck group, Annie's Big Chicken offers you support.  He's been in hiding since the day I had my SOM surgery.