I SAW AGAIN, IF ONLY FOR AN ARIA

Photo Source: http://www.timeout.com

I saw the world with near perfect vision this week.  It was so surreal that my logical brain is still processing it: low vision to seemingly crystal-clear vision and back again.  I think I fell down the rabbit hole like Alice, or more accurately, I finally climbed back out.

It wasn’t really a Lewis Carroll tale.  I finally saw an optometrist who works with scleral contact lenses this week. These medically necessary contact lenses, which can work for those who are contact lens intolerant like I am, are my only hope to ever truly see again.  Scleral lenses can correct keratoconic vision and actually help severely dry eyes like mine, as the lenses are filled with saline solution which keeps the cornea and most of the sclera nice and moist.

Scleral lenses, like other specialty lenses, need to be a perfect fit.  The optometrist, who was very knowledgeable with a great personality to boot, had to determine the correct diameter lens for my eyes and then try various lenses out for fit.  The lenses seem very difficult to get in due to the fact that the saline solution can’t spill out, so he had to put them in with my face parallel to the floor, which is what I will do on my own in due time.  If I blinked while he held my eyelids wide open to get the huge lenses in, an air bubble formed and then the process needed to be repeated.  The lenses were inserted and removed with a little suction cup on a stick.

After much trial and error, I had two scleral lenses in my eyes and they gave me a smooth corneal surface, instead of a keratoconic one.  However, the doctor pointed out after looking at my corneal topographies, which at least haven’t changed in 2 months, that the center of my left cornea is now completely flat, which is not normal at all after cross-linking (CXL) and finally explains why my refractions for the FDA clinical trial show farsightedness in that eye now, not that I can see far or near for that matter.  I get a + rather than a – reading, to put it in layman’s terms.  No wonder the scan says the severity of keratoconus is 0%—the steep, cone-shaped cornea I had got bulldozed by CXL for some reason.  Well, so much for a safe surgery with hardly any complications.

The scleral lenses need a prescription in them like regular contacts, which I’m sure my good doctor was dreading by then, but regardless, I needed the scleral lenses in my eyes to get an accurate refraction.  I looked through the refractor and the doctor began flipping lenses over my right eye. Which lens was better?  I should get a lollipop after refractions at this point.  The odd thing was that I could see a difference in the lenses nearly every time for once. Suddenly, I had dark-black, crisp lines of letters in front of me.  The ghosting—or multiple images—was gone!  I read 20/20 with ease and I knew it was really 20/20.

He repeated the test with my left eye with good results, but not superb.  There was still some faint ghosting and the letters weren’t as crisp, but I read 20/30 and with ease again. I quickly rambled off the letters instead of taking 5 minutes and guessing like I normally do.  There’s a reason why the left eye—my better eye before CXL—can’t read 20/20 even with scleral lenses.  That eye has developed central corneal opacity, a type of scar, that’s in front of my pupil and is affecting my vision. The optometrist discovered it in a simple exam of my corneas, and I thought he was confusing it with the right eye, which developed opacity months ago that’s not affecting my vision. He wasn’t.  I have a serious scar in my left eye now.

This was just maddening because my idiotic corneal specialist wanted me to return to L.A. to see my CXL surgeon due to the mild opacity—more like a slight haze—in my right eye and has been monitoring this rare side-effect of CXL for months.  I literally saw him 2 weeks ago and he never noticed the scar in my left eye that has stolen more of my vision? The optometrist, who should be the M.D., luckily has a better corneal specialist for me to see who I’ve never heard of, so possibly he’s new to the area.  I wish I had been told that my vision wasn’t fluctuating at all per my scans, rather than the opposite, so I could have seen the optometrist sooner, who would have gotten me to the new corneal specialist in time to possibly treat the scar.  I trust this new doctor, and that’s a rare thing.

So, now my doctor had my prescription, which must be the strangest in the world.  He put it into what looked like opera glasses—ah, the post is making sense now.  He handed them to me and told me to look through them.  I noticed they were heavy as I held them with two hands and placed them in front of my eyes.  I could see!  I saw my doctor and there was so much detail in his face that I hadn’t seen before.  Even the color of his skin had more tones and shades.  I looked around the room as if I hadn’t been sitting in there for more than an hour.  He told me to walk around with them, so I eagerly did.

I think I was falling down the rabbit hole again.  I became extremely dizzy and felt like I had heavy moon boots on.  I noticed I was walking at some strange angle—almost on a backwards incline, yet I felt I was falling backwards so why couldn’t I lean forward?  I tried to keep walking, although I looked like a cat in kitten mittens.  I saw the waiting area that was down the hall and it seemed so close.  How could I see it? I walked towards it with my opera glasses and kitten mittens walk.  I turned the corner and saw all the glasses in display cases for sale.  I think I could have read the price tags if I cared to, but why bother when glasses don’t correct my vision.  How surreal it all was.  The dizziness was getting to me so I headed back to the room with my weird walk.

I told the doctor how I could see everything, but I felt so dizzy and couldn’t walk—as if my depth perception were off. Perhaps the prescription was too strong, although I wasn’t getting a headache and my eyes didn’t feel like they were crossing, which I’ve experienced with poorly prescribed glasses for mild myopia in years past.  He said that the opera glasses are very thick and aren’t exactly the same as the thin scleral lenses that will be right on my eyeballs.  He also reminded me that I will need to adjust to seeing again.  What an odd concept!  Then, I handed him the opera glasses and re-entered Low Vision Land.

I could see less than 2 years ago.  They say that you don’t know what you have until it’s gone, but one could also say that you don’t know what you lost until you get it back. During the aria, while I ungracefully walked around the optometry clinic with my opera glasses on, I was in la-la land—maybe I was seeing Madame Butterfly in there like I did years ago at the now demolished Seattle Opera House.  I forgot that I once saw the world this way, sans opera glasses.  In such a relatively short time, I’ve become resentfully accustomed to this horrible vision.  When it was briefly gone and then came back, I realized how abysmal my vision really is.  I truly felt blind.

That made me think this week, as I replayed my aria of sight in my mind while waiting for the scleral lenses to be made in Texas.  I should have them within a month and then I’ll know if they will truly work for me.  I’m used to my low vision again and only have snapshots in my head of that near perfect vision I experienced.  What if science invented something that could take away the unbearable, chronic pain that I’ve lived with for 12 years from Ehlers-Danlos?  What would that aria be like when my collagen acted properly and all the connective tissue in my body came back together and healed itself?  Would I just sit for hours since I can’t sit long due to the pain?  Would I feast on the hundreds of foods that my GI tract can no longer digest?  Would I regain 20 IQ points from not having a brain on pain?  Would I catch the next flight out of this horrid city and be an expat again—my ultimate dream?

I would forget what the pain is like during the aria, just like I did with my low vision.  Then, when the doctors took away whatever medical miracle made the pain go away and it all came rushing back into my body in a nanosecond, much like removing the opera glasses, I would scream the most bloodcurdling scream imaginable and it would be heard all the way in Japan—just as Madame Butterfly commits suicide with her father’s hara-kiri knife.

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50 thoughts on “I SAW AGAIN, IF ONLY FOR AN ARIA

  1. dyspatient says:

    Amazing post, and amazing experience. I know it’s not all good, but it’s still an amazing experience to read about.

    I remember when I was a TA in intro psych, we did this lab experiment with the kids with the prism lens glasses. It took so little time for the students to accommodate the shift in their vision, not 100% but enough that when they took the glasses off there were “oooh!” “oh!” and “woahs” all over the room as they tried to perceive and move in their newly restored “veridically” visually perceived environments. I hope the lenses work for you when you get them, and I’m happy to hear that someone finally got a good look at what’s up with your corneas right now! I can’t believe the other guy(s?) missed it. :/

    • Hey D,

      Thanks! Yes, better to never have gotten KC or to have been diagnosed early enough to get by with glasses like in the very beginning for a couple mos., but it is what it is. I’ve been really pissed about what happened (for over a yr now) with the corneal specialist. I feel like they blinded me twice! I saw an optometrist for the sclerals and he figured this all out and explained so much. It was a rare find out here. He also knows all about EDS (thinks everyone with KC should be screened for it), which I think I forgot to mention. I think he’s more optimistic than I am that the sclerals will work, but I did feel like those kids you worked with (not familiar with those glasses). It was odd enough just seeing, but that weird walk–not sure. The good news is that despite having large eyelids that partially cover my pupils (inherited from my father), they’re stretchy due to EDS per my doc (they are?), so he thinks it really won’t be that hard for me to get those huge lenses in/out with the little suction cup stick. I’m not sure. I think if they didn’t have that saline solution in them it would be so much easier. So, I will sit and worry… What if one goes down the drain, falls on the floor and I crack it, my eyes get too dry, and on and on.

      Someone told me how my life would be so much better when I could see again, but I was like, “No, it’ll be about the same.” The KC was like the icing on the cake. The EDS is what has totally ruined my life, and if I still can’t drive due to light sensitivity (it’s so bad), then it’s all sort of a moot point. I’m sure that all sounds terrible from someone who got lucky that CXL happened to be in trials and will maybe see via sclerals when other people are losing there vision for good. I just think it would be a whole different ball game if I only had KC, as I know people like that and once they get lenses, life is good again. Maybe you can relate to that.

      Thanks for your thoughts,
      A 🙂

  2. I can only say WOW. I mean, I read this post this morning as I woke up, still in bed browsing on my phone. I had a terrible day yesterday with Gen as we are now suspecting cervico-cranial instability. I knew something was wrong – we were just being pushed aside so I just kept thinking it was a virus. How silly of me. So anyway, I was feeling like crap but when I read this last post of yours, it was as though the sun was shining in my bedroom! It was comforting to me – like finally some light is going your way and I needed to hear that. It may sound odd but it made me feel better. Better for you and that meant tons at that very moment. I can’t wait for you to get the lenses!

    This is a beautiful post – it’s like something from my childhood on Christmas morning.

    • Thanks, Sheep!

      I’m glad you got a break from my post. In all honesty, I’m really worried that they won’t work due to the insane dizziness/depth perception issue or if my eyelids (and the part of my eyes not covered by the the vault w/the saline solution) get horribly dry. I really do use lubricating eye ointment every hour due to it and won’t be able to with sclerals in my eyes. Then, there’s the worry I’ll never get these crazy lenses in! It seems so hard due to the huge size and the solution that can’t spill–and that was my doc with perfect vision doing it! Well, I sound so optimistic! I know I could be blind and 5 yrs ago, I wouldn’t even have been able to (hopefully) halt this disease via CXL. I guess I’m used to nothing working and all the BS docs here–still can’t believe I have that bad scar that’s blocking my vision and I just saw my doc and he didn’t notice it. I get so mad that my follow-up care has been so terrible and they didn’t Dx me in time! It’s just not right.

      Well, thanks for stopping by. I’ve read about cranial instability (actually think I saw it on Vimeo). I know they fuse the C-1 and C-2 vertebrae for that, so it is fixable (surgery, I know). The symptoms are pretty standard I believe–think it’s detected with a CT scan. Not an expert as I don’t have those issues, but do know it gets more nerve-y/headache-y with that. Just know it is fixable–that’s the important thing.

      Hang in there… Write a post! I’ll be here worrying for worrying’s sake…

      A 🙂

      • Thanks A! And yes all that nonsense about your vision and the crappy doctors. But i have a good feeling about that guy. At least he seems to know what he’s talking about! And it’s normal you are so scared… Who wouldnt be after all this crap? Hang in there. I’ll be thinking positive for you!

        Yes for Gen but it looks like it will have to be done in the States. I’m just being mentally unstable. I was just hoping that the OI was it. I’m tired.

    • dyspatient says:

      sorry to hear Gen got hit with this . I hope you guys can get something to help.

      • We all need to move to Baltimore (and poor Gen)! I’d need a giant dehumidifier, but maybe they have a group discount. Ridiculous!

      • Gen’s a little bee. And now, since I’ve been talking to the ILC Foundation here in Canada, so much light is being shed – all this because A. introduced me to Katie. Gen also has issues with her blood and now I’m being told she may need perfusions. It’s a lot to deal with but I’m sure she’ll feel much better all this. I know the EDS pain is bad as well as we can barely touch her. For now, anything that will give her a little piece of her life back as to be thought of as good as ironic as it may sound.

      • Thanks and I’m glad I stumbled upon Katie for you guys. Little by little…

      • Thanks again A 🙂

  3. Yes, I have a very good feeling about this doctor. I’m so upset I didn’t find him when my vision 1st went, but after the ophthal. dismissed me, I just assumed I needed to wear stronger glasses 24/7 so found an optom. in the neighborhood (who misdiagnosed me). My new optom. for the sclerals was shaking his head at that report. Well, how could I ever imagine this would happen?

    I know how you feel with Gen. It’s like my KC (see above–how could this happen?). EDS just keeps going and going (if it is EDS). I presume in time I will have other problems, too. I’m so worried about my messed up tendons/ligaments to start! I worry about OI, even though I don’t have symptoms now. I bought some electrolyte tabs (thought of you) and am allergic to the fruit flavoring! Well, didn’t make me feel any different, so maybe that’s a good sign. The spinal issues are less of a concern for me–I think it’s more of a HEDS thing (or I’d have had problems by now). Anyway, it IS all very overwhelming and you and and I are doing this on our own. I sure hope you don’t have to travel. I hope that organization in Toronto has resources for all the costs. In the States, having any income pretty much ruins your chances of getting any assistance with anything. Well, now you see why I go to the not-free free clinic (still trying to make it work!). I wish I could just unzip myself and get out of this body for good! 🙂

    • I’m always thinking “prevention” with Gen – so I know what you mean. I guess we know there are more things coming. I read Katie’s blog and ask her questions along the way – I can’t tell you how grateful I am to you for connecting us. I’m afraid Gen’s finger joints will give out sometime soon and I’m trying to think of what we can do now to prevent that (following Katie’s advice). Her knees are starting to give her real problems – we see evidence of that in physio and she’s working on that now. Like you, I wish we could have done something when it first started or at least when we started noticing symptoms. We just have to hope for solutions or a break on some things.

      But it’s amazing how keeping in touch makes a huge difference – in so many ways. We need to speak out. I’m going to write that book. 😉 And really, we should write a collective piece of work!

      This may sound crazy but I think people with EDS are gifted. I swear! Anyone noticed that? Gen’s IQ score is way up there and I honestly think it as something to do with the gene thing…

      • Pas de problème! PT is a slow process and I have to do things on my own daily–more like every 2 hrs for the pain/stiffness. What worked for my subluxing fingers was hand putty. You can get this online or maybe your PT place sells it. They should have it so Gen can use it. She would need a soft putty to start with. It strengthens all those teeny muscles around the joints. Btw, my PT (and staff) doesn’t know anything about EDS. They all treat me as a hypermobile patient (who’s not super hypermobile) and I tell them what’s not feeling good and what is OK. It’s a long process! I don’t get pain reduction, but haven’t had any injuries (mainly sprains) in a while. In my case, I don’t think they know what causes myofascial pain in EDS. This is my HUGE problem. So, rather stuck there as my joints aren’t a big issue.

        Not sure about an IQ connection. The only time I’ve heard of that is with the recessive, neurodegenerative diseases seen in Ashkenazi Jews (oh, I’m not a genius here!). A blogger, who is an epigeneticist, actually posted on that but I read about it some time ago. We have some terrible diseases that developed when we moved into Europe and our gene pool grew so small, but the theory is this may be the benefit (like how sickle cell anemia prevents malaria). Many bloggers seem a little smarter than the average bear, but I live in Illiterate Land out here. I was tested for the gifted program in 3rd grade or so and passed every test except one dealing with puzzles, so no special classes for me. I still hate puzzles and things I can’t logically explain! 🙂

      • Thanks for the putty info. I’ll get that for her. Our PT has been reading everything about EDS. Every time we go she explains something new. She stops Gen all the time – and keeps saying she “over estimated” her capacities. She’s pretty amazing and very very smart. She’s a big big help and is good at motivating Gen simply because she is not “pushy” nor she is condescending. We’ve had so much of both it was unbearable – made Gen want to stay home and hide in the closet.

        I’m going to try to find an IQ connection. Someone at school told me that Gen’s results were way above what they see in the “very gifted” kids. I’m sure there’s a link… I mean, look at how talented and mature Katie is and my daughter is like that as well. She actually doesn’t “match” with anyone. I mean, right now she has ONE friend.

        We’re also in Illiterate Land! Maybe they’re twin towns? 😉 And I don’t think it’s a blogger thing… lol

      • Haha. Well, you do feel quite brainy when you live among the illiterates. The sad thing is this is a bigger city. California was just as bad. I swear to you that if a word ends in “S” they put an apostrophe before it. Any word! I’m so glad to hear about PT and that you found a good place. It takes a while and I have a good relationship with my PT, as well. As I’m sort of an atypical EDSer (or in my opinion), none of the info the geneticist passed on seemed to help, aside from stabilizing my shoulders, which she was already doing pre-DX. My PT actually helped me connect the dots when she freaked out about my subluxing shoulders. It got me thinking about EDS after the KC Dx and bingo.

        Let me know about the IQ connection as you’re the science-y one. This came from my mother (and grandfather) and I would have to say no there. My grandfather was a very simple man and my mother is not a brainy-type (funny thought).
        A:-) (and per the other comment–you’re welcome, of course!)

      • I honestly think most EDSers are “atypical”. Really. Because I’m come across people who tell me they have been diagnosed with fibromyalgia yet they have dislocating joints, and suffer from intense pain as well. But the way people describe their symptoms are somewhat different. I think of Gen who’s extreme in so many of her ailments yet, she has never suffered dislocations. I’m not even sure she is the hypermobility type.

        Will let you know for sure about the IQ.

      • Could be. It just seems like everyone is Type III and has the dislocations and POTS and then there’s me (and Gen on the other end). I’ve never seen any bloggers w/o Type III, but it is much more common. Oh, the fibro Dx is such garbage. I do believe it is a real disease, but it’s VASTLY over-diagnosed. I presented as a severe, fibro patient due to my myofascial pain when I first got sick, but by 2010 way too many oddities had popped up (so I can’t blame them for the 1st 7 yrs post-Dx I suppose).

        I didn’t know that Gen doesn’t dislocate. Can you have Type III w/o that? Hmmm. She could just be milder on the hypermobility spectrum and a mess with the ANS issues. Oh, then the cranial instability, though. I’ve only read about that with Type III, as well. I really think it’s a mess in general. So many overlaps. I have that VEDS overlap due to the venous issues (and more to come). Maybe they should re-do the typing again. Why are Types I and II together? They have different genes! Argh. I say Type II about myself, even if I tag my posts Classical EDS.

        My inbox just blew up and it’s so late, but trying to get to a few… Talk soon!

      • Dislocations are not a must in hypermobility types. I think there are so many things that remain unclear regarding EDS and the various subtypes. Gen hasn’t had her diagnosis yet and honestly, sometimes I wonder what else it may be. Her endocrine issues are too much for me to handle – it sometimes feels as though she is breaking down slowly. It makes sense to me if it’s a connective tissue disorder but why isn’t it like that for most people? Or if it is, why don’t I hear about it? I also have various endocrine issues… we all do and it started with my dad. Anyway, I try not to think too much because I’m already running after my tail and this will make me want to do more research. 😉

      • I didn’t know that and I spaced on Gen’s endocrine issues–sorry! Could it be 2 different issues (did your dad have any EDS symptoms)? I got hypothyroidism when I got sick and have low DHEA (like none), but the rest was OK (but some connection there). I REALLY thing that if you do go to Baltimore, it would be worth seeing Dr. Francomano before surgery as she’s one of the best and would be able to answer all of that. There’s also a program at the NIH (might be open to non-Americans) that takes a select amount of patients a yr. with very rare and severe issues that no one can Dx. It might even be free, but you have to apply and provide records and whatnot. I saw it on TV a few yrs. ago… Possibly worth looking into. Now I’m wondering how you got on the EDS track, as OI can show up w/o it, of course. Take a break from research! It’s like doing genealogy and can make you temporarily insane. 🙂

      • EDS because she turns her arms upside down and so many other odd moves. She’s pretty flexible – much more than a little. The OI can be explained by that I assume. When she was a baby the lower jaw was so flexible it caused a ton of issues – although they were disregarded by most. She was referred to genetics at age 2 for that problem – hyper mobility is written on the referral. And the pediatrician told me when she was very young that she was hyper mobile. Although some other people told me she wasn’t “that flexible”. Anyway, she can do any yoga pose but can’t maintain any of the positions because of excruciating pain and lack of strength. It’s just not there.

        My dad had the endocrine issues and POTS for sure. He had the same skin as mine – whether he was hyper mobile, don’t know and the poor man died at age 66. If you look at Jamie Bravo’s (MD) site on the facial features of EDS, my father had it for sure. You can see a picture of him somewhere in my posts on his wedding day. Notice the anti-mongoloid slant of the eyes and the narrow chin. The features are there. I have the same thing and so does gen. There is definitely some connection, but what else?

      • Sounds hypermobile to me! I mainly have it shoulders down and can twist my arms, too. I also can do the thumb and wrist sign seen in Marfan’s and the thumb to wrist thing and that’s about it! I never saw photos of your dad–did I miss a post? I’m not sure of the eye issue, but some people with Type II get a fold in the inner corner of the lids which gives a Mongoloid appearance (how kosher is that term?). You can see my huge lids in my image/Gravatar. They’re from my father, grandfather, great-grandfather–very Semitic eyes–so I don’t have that eyelid issue. I’ve seen the VEDS facial features and then others with VEDS who don’t look like that at all! My grandfather (who had the Marfanoid body-type more or less) had very high cheek bones and a long face–he had a bit of a Lincoln look–they are still trying to determine if Lincoln had Marfan’s. Someone told me people with EDS have rubber faces (she had EDS). Lol! I’m trying to see the best I can in the mirror to figure out if I have it. So funny!

      • It’s this post: http://sheepinabasket.wordpress.com/2013/01/30/daily-prompt-burning-down-the-house/
        Notice the downward slant of his eyes. I’ve been told a thousand times throughout my life that I have “weird” eyes… (OK, thank you.) Then there is the typical pointy chin.

      • News to me. I only heard of those folds and the VEDS look. I don’t think his eyes look odd, but I notice the downward slant. I’ve seen eyes like that before–like a familial trait. His chin reminds me of Jay Leno–no EDS there! Hmmm. Just haven’t seen this in the journals and I couldn’t find anything on Dr. Bravo’s site. Well, I’ll take your word for it. My father and other brother have pointier chins (not super pointy or super long), but no way does my dad have EDS. OK, I’m really going to bed. It’s so late and today was just awful–running on empty.

      • It’s actually a very pointy chin and small. Different from Leno’s I think who was a wider although prominent. Nothing of the like. I’ll try to find the slide show as it’s fairly convincing. Especially when we compare with Gen’s features. The passport picture is the most revealing of all because of the way it is set.

      • Hmmm. And sorry to make your dad sound like Jay Leno!!! I’ve really never seen this on EDSers and I only find mention of it in threads, not any medical journals. I don’t think your dad looks odd in any manner–some syndromes or VEDS will do that. Could it be related to something else? My step-father (the OB-GYN) had this code word when a baby came out not quite right. FLK–Funny looking kid. It meant go due some testing on the baby, but one time he did the FLK and then the father came in to the delivery room–same weird look! Haha. 🙂

      • Lol FLK. Funny! Oh my dad was handsome and the little pointy chin is a common thing I’m sure. And if you’d see Gen’s face you’d know exactly what I mean. But it’s pretty in a girl – at least I think so. I’ve seen mentions of it elsewhere than in Bravo’s work but not sure where it comes from. I can tell you that Bravo is not completely off in terms of the physical attributes. Here we’re covered in these little brown moles and Gen has that blue sclera that he mentions. The “dumbo” ears – well they had noticed that in genetics when Gen was little (because of course they measure everything). Anyway, my point is that my dad definitely had these little features – but then men are not hyper mobile like women (for that type anyway). But then again, the VEDS is also written as a possibility for Gen according to the Montreal specialist. So really, we don’t know much of anything yet and there is so much overlap. I also have the prolonged bleeding time problem which has caused me to have serious hemorrhages on many occasion – where does that fit in? Is it just a clotting factor thing or does it have to do with vascular issues?
        I like Jay Leno – lol.

      • Dr. Bravo’s link won’t open still (argh). You told me about him ions ago so I do remember and went there last night but couldn’t find anything. Well, maybe not everyone gets the features in Type III. I do know about blue sclera (mine are white). My new optom. asked me if I knew about it–such a good doc! My grandfather was more hypermobile (he could pop a hip in and out w/o pain) and we’re Type II. It’s the overlap–even between the other CTDs that messed it all up! So many comments and new posts to get to…

      • The links really don’t work well. It takes long to open. You have a good doc there!

      • Go to bed or you’ll be like me and be dealing with comments all night/day! I have to comment on your posts–get back to me AFTER you sleep! 🙂 Haha.

      • If you can open this : http://drbravo.site.aplus.net/ACR2011/HypermobilityStudyGroupII.pdf

        It is rather interesting. Bravo is an expert in the field and there seems to be many EDSers in Chile.

      • This finally opened. OK, he has a VEDS patient on there (long earrings). I saw her in a publication on VEDS, so I’m taking this with a grain of salt. A few other non-HEDS things… I have the weird skin on my knuckles–I noticed it after I got Dx’d. I also have held pencils/pens very strangely since I was a kid–never even thought about that. Again, Type II here. I’m confused on the square shoulders. If he means broad and not slanting down then yes–that’s from my father’s side. The men have broad shoulders. I actually like them, but can’t get coats to fit my skinny body comfortable due to my wide shoulders. They will hunch forward w/o PT. My father has Spock ears (pointy)! He has very kinky hair so it hides them, but that come from my paternal great-grandfather–no way is there any EDS over there. Not sure about the nose. I didn’t understand that entirely, as everyone looked different! I didn’t see my face on there, but presume most of those people are Chilean (usually more of European descent), although I have 2nd cousins (Jewish) in Argentina. Well, I’m just not sure! I think I buy into it less as I look just like my father and he isn’t the EDS one!

      • We shouldn’t over analyze all that stuff anyway. Same here with the square shoulders – we all have them. But I think what he refers to is more of a marfanoid thing. I don’t think there is anything about our shoulders – there just broad. lol I bought the book that was published by many experts – and they only mention certain things in there.

  4. rachelmeeks says:

    One of my favorite things you posted – I love the “rabbit hole” allusion. I think it fits illness perfectly. It’s a trip to experience things completely differently than the people around you.

    • Hi Rachel!

      Thanks for dropping by (and for the like!). Yes, the ol’ rabbit hole. Being sick in general is some bizarro world and then you add my vision and where else could you be but down the rabbit hole? I think my cat is really the Cheshire Cat at times. Now, if we could just figure out how to climb out of this wacky world. Well, feel free to elaborate on the rabbit hole analogy on your blog if you get writer’s block. I bet you could make some fabulous post about Wonderland. 🙂
      Hope you’re holding on…
      A

  5. Bonne nuit A. ! C’est à moi de me coucher maintenant. xo

  6. i AM FRENCH! lol
    My kids speak Spanish too. I tried when in university to swap a molecular heavy course with that but they scared me away and I ended up taking my science as always. I’m bad with language (at least learning it). My dad was assimilated to English – odd thing – but my mom was French so we were all sent to French school. It was a good thing otherwise I’d only be English speaking. Imagine?

    • Ha! I thought it was just from living in Canada since you’re not from Quebec to my knowledge. How cool! Well, now I’m afraid to chat in my crappy French (oh, how else will I learn?). How lucky for you that your mom sent you to French school and you could speak with her. I did meet people in Quebec who really couldn’t speak English which I found so odd from all my time in B.C., but I could say the same about these parts. Lol! That’s great about your kids and Spanish, too. Just come on down to the SW, but I speak Mexican Spanish with all the bad words. I do have a knack for languages, but I think I just need to learn them on the streets for the most part (or they just don’t know how to teach foreign language in our countries or something). One day I hope I can study French again (and then Italian and so on). 🙂

      • I just LOVE Italian. 🙂
        My dad was afraid we’d lose our French if we attended school in English. Odd for an English speaking language guy. English is dominant here.

  7. joyce armstrong says:

    Hi, could you please let me know the name of the doctor who did your cxl procedure. My son is going out to LA and want to make sure he has good doctor.

    • Hi Joyce,
      I’m sorry, but I keep all of my doctors anonymous on this blog due to the litigious society we live in. I had epi-off CXL and I would never recommend epi-on if that helps at all (there is a Dr. in LA who does that). Please do your research if you get pressured into the epi-on route (this is not in trials and not how CXL is done in Europe, where it was developed). I would also not get pressured into getting Intacs at the same time–my doc did NOT do that to me and I was dead set against it. I did get VA back and one of my eyes actually flattened (not good) and Intacs would have been a total mess, but I developed KC from Ehlers-Danlos syndrome, so not typical KC, which I presume your son has. Intacs can always be done after if need be.
      Thanks for dropping by and do check the clinical trial site on my very first post–you may find my surgeon there in the trials (I’m not sure as I’m 10-mos out or so.). See the names that keep coming up in the medical journals of the docs who do epi-off–this is what I did. Take care and good luck to your son. Sorry this country is so ridiculous and I can’t tell you more…

    • Sorry I couldn’t provide this earlier but had to get to an appt. This is the only study I could find that is updated and recruiting–click on “locations” as there are over 70, but there is 1 in LA. I believe (not sure) that CXL is close to FDA-approval so the trials might be fizzling out. This is a Phase 3, as was mine (this is through the same company actually–they are trying to get the patent). Also, can your son’s ophthal. refer him somewhere (a trial may not be on the site yet)? CXL is safe and I don’t think it’s necessary to see the best of the best, per se, as it’s new for all the US docs. I saw a very good doc and had problems post-op due to my connective tissue disease, but everyone I’ve met online was fine after surgery w/o complications. He will also need a local doc to do follow-ups if permitted by the LA doc–they really should discount for this in my mind. Lastly, keep in mind that these trials are not free and LA docs seem to charge the most, although the overhead is very high, of course. This is padded on so they can make more profit–basic dollars and cents. I had no choice as my KC was progressing so fast and I got into an LA trial. Anyway, you can change out the cities on this site–San Diego had trials before, as well. Not sure where your son is, but maybe he won’t have to travel at all. Good luck…

      http://clinicaltrials.gov/ct2/show/NCT01459679?term=corneal+collagen+crosslinking+and+los+angeles&rank=1

      • joyce armstrong says:

        Hi, Thank you for your reply and I understand why you can’t give the name. The doctor we are arranging to see is the one in LA that does the epi-on procedure. We have been very interested in this because it has been stated it has less risks compared to epi off that has risk of haze, infection, etc. I actually read yesterday that some doctors felt that in the future epi on would be the more normal CXL procedure. Can you tell me what you have heard that is negative about the epi-on procedure?

      • Hi Joyce,
        I am going to have to be careful with my words as this doctor your son is planning on seeing does heavy PR online (and shows up in disguise on people’s blogs–not kidding). You must have heard the hard-sell dealing with them. Did you get an e-mail with 1,000 downloads? They have no studies backing up their procedure. The researchers are TRYING to find a way to do epi-on that is effective. They are STILL studying this. The efficacy rate of the epi-on procedure available now is around 30%–just do your research like I did (this means 70% failure rate). My surgeon also redoes epi-on patients due to this and I’ve met people online who went this route and their KC kept progressing. If this were effective, why would the Europeans still be doing epi-off? Dr. Theo Sieler developed CXL–you can do some research on him as he still stands behind epi-off (as does the entire EU). There are a handful of docs who do epi-on and will sell you down the river with their bogus stats. The haze is transient and goes away (if it develops) via the ocular steroid. My epithelium took nearly 2 wks to grow back due to my disease (normally it just takes a few days and you have bandage contacts) and no infections even with me (you are given strong antibiotics). CXL is extremely safe and removing the epithelium poses minor risks (and more pain), but it works! They remove it for PRK surgery every day (like LASIK). I don’t have the time to scour the medical journals, but urge you to do that (other doctors are on the payroll so watch for that). I also have NO idea why your son had Intacs 1st (why would a doctor recommend that)? Roughly 2/3 of people who get CXL get some improvement in VA and I can only presume the Intacs would have to be redone. This is a cash industry (my insurance would cover Intacs, but I don’t think this is always the case) and it’s rather disgusting. If you would like to speak to Europeans who have had CXL (some have had transplants), you can go to http://www.keratoconusgb.wordpress.com. They are on Twitter, as well. Good luck and PLEASE do your research so your son (or you) doesn’t pay twice for this. Best…

  8. joyce armstrong says:

    My son actually had intacs procedure last week, still bit blurry but doctor felt at follow up that the intacs are well positioned and the blurriness is only temporary.

    • Actually, Intacs disqualify people from the CXL trials–it’s in the exclusions. I have no idea what his Dr. was thinking by putting them in first, but this is all looking rather suspect to me. I suggest you contact http://www.nkcf.org. They will reply to your e-mail and do give referrals. Our foundation is very helpful, as most doctors are not. Take care…

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