"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘eyes’

Eye issues: Real and a Bit Concerning

Em sees the eye doctor once a year, as is recommended for EDSers. This time it got stretched out to more like 18 months because we ended up having to see a new doctor (this is her 4th OD, we have liked most of them and we really liked the new one) and had a wait until she was able to take our insurance. The wait was not a big deal, but with all of the issues Em has been having (particularly the vision issues and possible migraine symptoms that have developed) the timing of this appointment yesterday was pretty good.

For better or worse, Em said her eyes were as bad as they had ever been yesterday so the timing was great to have them really see what she was experiencing. Her vision has definitely worsened since the concussion and then there was this weird thing of floating black spots that she has complained about.

Anyway, the docs in this practice have always been good about doing a thorough exam and the new doctor was no exception. We were actually there for a good 2 hours – even for an exam including dilation, that is a long time. There were some issues found.

  • There is some cloudiness on both lenses. This has developed since her last exam and the cloudiness seen is more than expected. The doctor said it is not affecting her vision yet, but, and I quote, “she may need cataract surgery sooner rather than later”. What?? She isn’t even 18. I don’t even know what to think about this, honestly. (I’ve seen various positions on whether this is an EDS thing or not but haven’t found anything conclusive yet.) The doctor said it is not a big deal and we will just keep an eye on it but it feels a little freaky to me.
  •  Her complaints of double vision are real. We are being referred to another Dr in the group who will evaluate her further and hopefully address the convergence issues that have worsened. It was already an issue (no one has ever followed through with dealing with it) but the concussion probably has brought it to a serious head. They are trying to get her in asap but there will likely be a bit of a wait. Should know soon.
  • Her vision complaints (the black spots, the black line that appears during her migraine like headaches)  are likely not in the eye but rather in the visual pathway in the brain. This is very possibly from the concussion, although, these were issues before the concussion. They did a scan of her retina, mainly for a baseline for future use, and it was fine.  Excellent even, so that was good news.
  • The doctor said it was a very good idea to have her worked up for migraines, considering the visual symptoms Em described. (To which I say, “na na na na boo boo” to the neurologist who ignored these symptoms. Not very mature, I suppose but so be it!)

Hopefully we can get her some relief on this – she is having an increasingly difficult time reading and functioning. I don’t even know what to think about the cataract issue but I am very glad she is in competent hands who are taking her seriously.

 

 

More Eye Weirdness

One reason I started this blog was to have a place that I can record symptoms, so I have a record that I can refer to as time goes by. If it helps others, that is icing on the cake. So I am doing just that today – if others have similar experiences and want to comment, great. If somebody has a clue what is up with this newest weirdness and wants to comment, also great.

As I have posted previously, Em is having episodes that look seizure-like but are possibly a type of migraine. Sometimes she has visual disturbances with them and I have asked her to describe those disturbances. She has specifically described that she has a dark band across her visual field or black spots during many of the episodes. Which I just accepted and entered into the log I am keeping.

But a little more questioning has revealed that this vision thing is not new. After  a recent episode she said that these black spots are not new, just worse than ‘normal’.

So, she has black spots (like a darkly tinted window, transparent but dark)  that drift across her vision during the episodes. Multiple black spots that converge and, when they do, they become less transparent and more solid black as they layer on top of each other. After a while, they drift back out of her visual field. Her eyes aren’t always open during the episodes but when they are, these black spots are typical. The solid black line happens occasionally rather than the spots.

None of that is unexpected with the neurological natures of these episodes.

What is unexpected is that she says, for her whole life – as long as she can remember, she has had these black spots. They aren’t floaters – she is describing large spots in both eyes where her surroundings disappear or are blocked. They drift in to her vision and drift out again. They occur daily, multiple times, as far as I understand, and are big enough to block out someone’s face or whatever is in her field of vision. Then they drift off (I think, as opposed to disappear) and her vision is normal again.  She doesn’t remember a time when she didn’t have them.

Mind you, she has had yearly exams by an ophthalmologist since she was diagnosed with EDS and had had her eyes examined several times before her diagnosis. Has she ever once mentioned these spots? No. In fact, her defense is that the eye doctor always says her eyes are normal so she just figured it wasn’t anything to worry about. Annoying and inconvenient, but not a big deal in her mind. I know the danger of having so many weird symptoms is that you don’t know what is normal and what isn’t, but it is frustrating to realize she is 17 and never saw fit to mention this. Then I start wondering what other symptoms is she experiencing that I don’t know about…

She has an appointment with the eye doc in late May, so we will definitely be bringing this up then. We also will see the local neurologist before then, so can talk to him about it. She did just have 3 brain MRIs so at least the generalities should already be covered. Hopefully we can get the inpatient EEG monitoring scheduled soon so we can at least start figuring out what is going on.

 

 

Recent Adventures

I seem to be apologizing for my absence a lot lately – my computer situation makes it challenging for me to post right now. But, there is hope on the horizon – my mother has generously donated to the Let’s Keep Beth Sane Foundation and is loaning us an unused desk top until we can get a new laptop. Now I just need to get it set up and running. (I hope everyone knows the Let’s Keep Beth Sane Foundation is a joke and not a serious request for donations, although, heaven knows, I could use a little help in that area!)

rainbow scroll

Anyway, I will try to catch everyone up on what is going on:

The latest adventure (there is ALWAYS some type of adventure around here) is pretty typical. If September is Em’s month for dislocations, strains, bone contusions, etc, then late fall (October/ November) is her time  have some kind of eye emergency. Last time, a toddler punched her in the eye.

This time, that precious little kitten we so lovingly took in to our home smacked Em in the eye, claws out. Her claw caught Em’s upper eye lid and we worried that her claw went through the eye lid and scratched the eye, because her eye immediately started hurting and watering and her vision was off – she couldn’t focus and her eye was terribly sensitive. Of course, this happened after office hours so we waited out the night to see if it got better and, when it didn’t, called and got an appointment to see a doctor. (Ironically, we were in the same exam room that we were in last eye emergency. Alas, the friendly little puffer fish she made friends with was no longer swimming in the aquarium. She didn’t believe me when I said Nemo rescued him…)

It bears mentioning that her yearly appointment with the ophthalmologist was less than a week before. (The doc we liked moved, so we got a new one – we really like her and she even treats conversion insufficiency, so she is going to give us more info on that.) So, anyway, last week I paid a $40 co-pay to find out her eyes are fine and dandy, 20/20 vision in both eyes.

Then, we get to go back and pay another $40 co-pay less than a week later because the kitten tried to blind her. Fortunately, there was no scratch. But, apparently even the pressure of that tiny kitten paw was enough to cause problems. The tear film was disrupted, her cornea is dry and rough (she already has pretty severe dry eyes) and her vision was noticeably worse. She struggled to read the first line of letters during the exam. But, the good news is that it should heal on its own in a day or two, her vision should go back to normal and she can just increase her use of eye drops until it feels better.  And, it is better today and should continue to improve…

So, in September we shall wrap her in bubble wrap to prevent injury and in October and November she shall wear goggles to protect her eyes.

In other catching up news..

rainbow scroll She saw the GI doc – waste of time and money, but whatever. Half the time I doubt he even knows her diagnosis, but we just carry on. This time, he finally noticed (after multiple visits) that she is on Tramadol and thought it was for abdominal pain. He probably still does, although we did our best to explain it is for joint pain. He vigorously tried to convince us to take her off it, which, frankly, we were not buying. We smiled and nodded until he dropped it.

rainbow scrollSaw neurology for a follow up – spoke with him about Tramadol and he reassured us it is fine. We are increasing her dose of Lyrica because most of the time it is enough but she has enough days of pain that it seems wise to increase it. He is thrilled with her progress and said we don’t have to see him again for a year.

rainbow scrollEm went trick or treating with her bestie. Yes, she is entirely too old to trick or treat but, you know, she is almost 16 and she had never gone without me. When she was 10 and had just dislocated her knee, she was on crutches and I went with her. When she was 11, she was in a wheelchair, very ill and getting worse, so just she and I went to a few houses and that did her in. When she was 12, we went with a group of friends – her in her wheelchair, some of our friends even pushed her. When she was 13, we went with some of the same friends, again, her in her wheelchair. When she was 14, she didn’t go – just stayed home and passed out candy (and tortured the dogs by forcing them to be in costumes).

So, now at 15, she was able to walk with her friend after planning their costumes for weeks: she got to be a normal kid. Yes, that planning included negotiations over what boots would go with the costume but not hurt her feet or knees. Yes, that planning included worrying over whether her costume would be warm enough, then when it was sunny and warm that day (our county does T or T on Sunday afternoon – sounds weird but is actually awesome because it is safe and warm and you can enjoy the kids costumes.) we were concerned she would be too warm. Yes, she planned her meds around the time she would be gone. But, the point is, she experienced normality and that is what mattered in the end.

And, while the girls were clearly ‘too old’ they certainly were not the oldest out that day, at least they actually put time and effort into dressing up, and they were polite: Em reported back that when they noticed people running out of candy, they gave back what they were given and told the people to save it for the little kids.

rainbow scroll We are working hard on the musical we are directing at our homeschool co-op. It is fun and hard work but we are both loving it. It is nice to see her doing something she excels at and loves.

 

rainbow scroll Malli[e], the snow white, angelic, innocent kitten who came to live with us… Let’s just say she has adjusted well to her new environment and rules it with all the enthusiasm a well fed, well loved kitten can muster. (Which is a lot.) She terrorizes our other pets, Padme and Sasha, who stoically tolerate her. She scratches at Em’s door all night long wanting in to play. She pounces on toes, fingers, computer cursors and letters being typed on the screen – anything that moves or ever thought of moving. She climbs the drapes. She ‘paper toweled’ my kitchen – similar to toilet papering only with a roll of paper towels. Use your imagination. And, then, of course, there is the Great Kitten Vs Eye incident of 2014.

But, she is adorable and part of the family, so we are stuck with and blessed by her simultaneously. I won’t lie, we all look at each other at least dozen times a day and ask, ‘whose idea was it to keep her?’ But, we wouldn’t part with her. Ever. Probably. Most likely…

 

 

Eye Doctor

On Thursday, Em had a follow-up appointment with the opthamologist. She had seen him 6 months ago for a regular check up but he wanted her to come back in early because of the weird eye thing she had experienced a couple months prior to that visit. That resulted in him being concerned in a bewildered sort of way and doing a test in the office. (I honestly don’t remember what it was and am too lazy to get up and look at the moment. Something to do with her optic nerve, as I recall – whatever it was, it ended up being normal.)

The wierd thing also resulted in an MRI that the neurologist ordered shortly after that, which also came back ‘normal’. The weird eye thing happened a few more times, although never so freakily as it did the first time. And, it ended up being almost a chronic thing – her eyes just tend to be dilated much of the time now. No major symptoms accompany it – her vision is a little more blurry, eyes more light sensitive and her head hurts a bit more when she is dilated but nothing she can’t live with. Honestly, we have gotten used to it and the comments I got on my original post about the experience convinced me that A) It was a pretty common thing with EDSers and B) It was likely connected to her autonomic dysfunction.

So, back we went, 6 months early, feeling much calmer about it and hoping he agreed. He did. As he stated the first time, he would be most concerned if her pupils suddenly started dilated unequally. When we told him about the time she dilated after an emotional upset (a car swerved into our lane and it scared her; her eyes were very dilated for more than an hour), he said that was totally normal. He also shared that he just did a presentation (somewhere… North Dakota, maybe?) about pupils. Some tidbits from that: fair skinned, light eyed people tend to have more dilated pupils as do younger people . Certain meds will cause dilated eyes. Females tend to have more dilated eyes. At any rate, Em checks off most of the categories he mentioned so he seemed to be implying that it may just be her. My money, however, is still on autonomic dysfunction as the cause but it really doesn’t matter at this point – although he doesn’t seem to disagree with my conclusion. We seem to have eliminated the dilation issue as a problem so we can move on…

She confided to him that her dry eyes have worsened in the past couple weeks, despite being faithful with the daily eye drops. He checked her out and said it could definitely be worse and that it was better than last time. He observed, again, that half of her medications have a drying affect that will worsen dry eyes. He also observed that she probably needs all of them, which she does. So, the goal is to do what we can to treat the dry eyes. For now he suggests just increasing the frequency of the drops. He also held out the possibility of plugging the tear ducts to increase the moisture on her eyes. It may be an option in the future but he didn’t think it necessary right now. The winter months are particularly dry, so we may need to do more if it becomes more of a problem.

She talked about how her eyes skip and jump and get tired. He tested her eyes and said she has mild astigmatism. She would benefit from glasses but it is not urgent. She sees 20/20 out of her left eye and 20/30 out of her right. He wants us to go to an optician, get her eyes checked again and see about glasses for her. I made an off hand comment about how an EDSers eyes can be so changeable from moment to moment and day to day. He responded with ‘Good point’ and talked about the shape of the cornea and so on. And I am pretty sure he was sincere in thinking it a good point. If not, he sure played it well enough that I believed him… After 3 visits with this guy, I still like him which is more than I can say for our previous opthamologist! It doesn’t hurt that he has simply accepted the fact that Em is on Diamox for her headaches and doesn’t say a word about it, so, yeah, he is ok and I really hope he stays that way!

We also had a chance to do a little EDS awareness with the nurse, which is always a good thing. She was a perky, chatty thing and asked about Em’s med list and conditions – and listened and asked questions when we told her about EDS and company. Yes, she said goofy things like ‘girl, you are too young for all this’ and ‘well, you are lucky it isn’t the more serious type of EDS, right?’ and ‘you just have way too much going on’ but, she listened and was sincerely interested so she gets serious points for that.

All in all it was a good appointment and we don’t have to go back for a year, unless we need to.

 

 

Test Results

We have not heard from the doctors involved, but I do have the reports from Em’s MRI and gastric emptying test…

Brain MRI – as expected, all is normal. I am going to have my husband get a CD of the actual images, so we can compare this MRI to the last one. Still no explanation of what is causing Em’s weird eye thing but I suppose I will give the opthamologist a call and make an appointment to see him now that we have the MRI results. I am glad to know that it is nothing serious (like a tumor) but it is kind of annoying to have to spend time and money to rule out things that are so unlikely only to likely eventually come back to the original thought that it is autonomic related. She is having (increasing ?) trouble with accommodation and focusing, which may or may not be related. She continues to experience this dilation thing (her pupils dilate and stay dilated for periods of time – a few minutes to an hour or more).  When her eyes are doing this, and we shine a bright light in them, it appears that her pupils are trying to contract. They contract slightly then dilate again. Sometimes continuing to shine the light at her eye will cause the pupil to eventually contract, sometimes it does not.

Gastric Empyting Study – at one hour, her gastric emptying was 21%. According to the report, that is ‘diminished from the normal value of greater than 50%’. At 4 hours, her gastric emptying was 100%. So, delayed in the first portion of the test and complete by the end.

I am a little confused, because the normal percentages I found online don’t really line up with this but (having thought about it for a day or so) I think the difference is Em’s test was with oatmeal and most of the info online is based on the eggs and toast meal. I vaguely remember seeing the different values for the different meals but cannot seem to find them at the moment.

Beyond that, I have no way of predicting what the doctor will say about the delayed emptying at 1 hour (if indeed he views it as delayed) and the 100% emptying at  4 hours. I am expecting a letter and a phone call by the end of the week, according to our past experiences with this doc so presumably I will know more then. I am glad I can have the report in front of me because I will be able to understand whatever he tells me better than I would have without it.

In a sense I guess it won’t matter, because he did tell us that he would treat her symptoms regardless of what the test showed, so I guess I can just wait and see what he says about it. Also, one of the most important things to keep in mind is that this is a snap shot of her overall gastric function. She is in a pretty decent spot right now – her constipation is controlled, she is taking in enough calories and eating a decent amount most of the time, and she knows what foods trigger her symptoms and avoids them. So, this test certainly didn’t take place when she was at her worst. And, these symptoms come and go – it can be ok one day and really not ok the next. Which is pretty much where she is, although for her it is more that she is only sort of ok one day and worse the next – these symptoms are always a problem.

All I can do now is wait to hear from the doctor and see what he wants to do.

 

Sigh… an update

Home from Em’s neurology appointment…

One of the main things I wanted to talk to him about was her eyes and her weird dilation episodes. When we saw the opthamologist a couple weeks ago, he didn’t seem particularly concerned about it. I mean, he at least didn’t act like it was an emergency but he was concerned in a bewildered sort of way. He wanted to see her back fairly soon to check her pupils and told me to call if it happened again. (Which it has and I haven’t, but only because we were seeing neurology and I am trying to get video when it happens so  the eye doctor has something to go on other than my word.) The weirdness doesn’t seem to cause a problem beyond making her a little more dizzy, have more difficulty focusing and more light sensitive. And some double vision, which apparently is a thing.

So, the neurology PA is concerned enough to talk about a referral to a neuro-opthamologist and is ordering an MRI.

Urgggh.

Part of me thinks it is a total waste of time and is overkill – she just had a brain MRI 2 years ago, but maybe it is necessary and will show something important. I mean, ruling out tumors is important, right? I am half way tempted to call the eye doctor and get his opinion of having an MRI. If it needs to be done, obviously we should do it… But, if it is just an overreaction, I hate to go forward with it.  I know it is going to be ‘normal’ (or maybe I just want it to be).

I just don’t know… But, it is scheduled for April 26th, so I guess we will wait and see. I am usually all for taking things seriously and getting imaging to rule things out, but I am really on the fence with this one.

I did ask about mitochrondrial disease today – Brian is very easy to talk to and is always willing to listen to whatever [seemingly]crazy theory I am onto at the moment. He knows next to nothing about it, certainly no details that are helpful in our situation. But, he doesn’t think I am crazy for thinking about it and even offered to refer us to someone if I wanted. I told him we would hold off while I talked to the rest of the doctors about it. It is now officially mentioned in her medical record, so maybe we are eventually going to get somewhere. It is a start.

Got blood work drawn to check thyroid and Vitamin D levels, so will wait and see what happens there. And we are waiting to hear exactly when the gastric emptying test will be scheduled.

We have been checking Em’s blood sugar per the GI docs suggestion – worried about hypoglycemia – and are getting a sense of a pattern. I have found all kinds of conflicting info online, but I think there is definitely something hinky going on. Probably something along the lines of reactive hypoglycemia, although it is weird. Weirdness is no surprise, though, with this child. I should just write a whole separate post about this part, but suffice it to say that we are on the trail of something.

So, we are doing as Dori says and will just keep swimming.

Weird Thing, Continued

I posted a few months ago about a strange episode that Em had with dilated pupils.

I have noticed her do it a few times since then, although it has not been as obvious or long lasting as it was that first time. On Friday, she did it again and other people witnessed it, so I’d like to think I am not imagining it!

I was kicking myself that I didn’t take a picture or video of her that first time and so, when it happened again on Friday, I got some video over Em’s protestations. I won’t show it here, because I am not sure it really shows what I saw and there is much of Em trying to not be recorded. (I just watched it again – and I vacillate between thinking it is significant and that I am crazy. I think it shows something, but I just don’t know if the doctor will think so.)

Anyway, here is what happened:

We were on our way to church on Friday evening – it was still bright and sunny outside at 6:30 or so. My brother was driving, Em and I were in the back seat: an SUV swerved into our lane and my brother hit the brakes because there was no place for him to go to avoid a collision. It wasn’t that big of a deal, but Em was really freaked out – she was feeling that we narrowly escaped death thanks to her over active adrenal system which frequently gets her worked up over nothing.

We continued on our way; I glanced over at Em and saw that her eyes were dilated again, although it was quite bright in the car. Her eyes did not change as we walked from the  bright out doors into the relatively dim church or when the lights were brighter in the sanctuary. Once we got in, I grabbed my phone and recorded a short video of her eyes. She blinked, held her eyes shut for several seconds and her pupils did not contract or change.

Her eyes remained like this through the service. Once it was over, I shined a bright light in her eyes just to see what would happen and her pupils finally contracted a little. From the time I noticed her eyes were dilated to the time I shined the light in them and they finally contracted, it was probably more than an hour. I am thinking this is some sort of an autonomic reaction – the first time was after seeing an emotional movie and the second time was after a scary incident. I can’t recall what was going on with the other episodes – they were more subtle and quicker to resolve, so I didn’t record them. Furthermore, I could be wrong, but it seems like her eyes are always, or at least often,  more dilated than they should be – relative to everyone else around her. But it is subtle and not so easy to catch – especially when I don’t know exactly what normal is.

So, the eye doctor wanted me to call if she did it again, but, of course, she did it on a holiday weekend evening, so that wasn’t going to happen. We see Brian, our neurology PA next week (supposed to have seen him last week but we had a snow storm and had to reschedule), so I think I will talk to him about it, show him the video and get his thoughts. Then call the eye doctor and see if he wants to see her.

The thing that makes me think I am not making this up is that, yesterday, when we were seeing the GI doctor, he did a double take when he glanced at her eyes. He spent a moment shining the light in her eyes, then moved on – I mean, a GI doctor doesn’t exactly specialize in eyes. But, that double take spoke volumes to me, because that is usually my reaction – something is just not quite right about her eyes.

I don’t think that this eye thing is a big deal – it doesn’t seem to hurt Em in any way, other than give her a bit of a headache and make her a little more sensitive to light than she already is. I would, however, like to have somebody who knows more than myself help us figure out what is going on.

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[Edited to add a slide show of pics from the video I took. If you think you see some murderous thoughts behind those pretty blue eyes, you are correct! Nonetheless, this is evidence for the doctors who are concerned about it!]

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