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Wondering if anyone else has been dx with this… I have had double vision on and off over the last 5 years or so especially after reading for prolonged periods or when tired. But since January everyday as my eyes fatigue my vision becomes double for distance vision. If I do any reading it will come on faster I guess as my eyes tire quicker. Usually by 1:00 or 2:00pm I can no longer drive. This is problematic as I am a single parent.
After many docs saying there was nothing to be done (I’m only 41)I have finally found an opthamologist that states he can cure this with in-office vision therapy + homework over the next 20 weeks. This is not covered by my benefits so will be very pricey hence my questions if anyone else has experienced this or had treatment work.
My history is complex. I have syringomyelia with a very long syrinx, tethered cord (detherered 4 years ago) POTS, Chiari zero, ?EDS (borderline on Beighton scale) and Cervicocranial instability. I have symptoms of increased ICP regularly. When researching this condition I was not surprised to see that blockage of flow of CSF thru the posterior cranial fossa is one of the possible mechanisms.
So my main question is if I go thru this therapy will this help me at all or will it just re-occur due to my ongoing pressure issues.
Any ideas appreciated! It is very traumatic to lose my vision at such a young age.
Wondering if anyone else has been dx with this… I have had double vision on and off over the last 5 years or so especially after reading for prolonged periods or when tired. But since January everyday as my eyes fatigue my vision becomes double for distance vision. If I do any reading it will come on faster I guess as my eyes tire quicker. Usually by 1:00 or 2:00pm I can no longer drive. This is problematic as I am a single parent.
After many docs saying there was nothing to be done (I’m only 41)I have finally found an opthamologist that states he can cure this with in-office vision therapy + homework over the next 20 weeks. This is not covered by my benefits so will be very pricey hence my questions if anyone else has experienced this or had treatment work.
My history is complex. I have syringomyelia with a very long syrinx, tethered cord (detherered 4 years ago) POTS, Chiari zero, ?EDS (borderline on Beighton scale) and Cervicocranial instability. I have symptoms of increased ICP regularly. When researching this condition I was not surprised to see that blockage of flow of CSF thru the posterior cranial fossa is one of the possible mechanisms.
An eye question! I know this one! 😉 Assuming your doctor has ruled out other causes of double vision (trauma, tumors, etc), AND hearing that you have symptoms of high intracranial pressure, this sounds like a straight-forward case of lateral rectus palsy secondary to high intracranial pressure. Did you see The Driscoll Theory? Do you know that many of us tend to develop high intracranial pressure? If you have no contraindications to Diamox, that may take care of both conditions simultaneously (and at about 8 cents a pill, it is much less expensive!). I’m surprised that your doctor wants to try eye exercises for this, as such exercises CAN be beneficial for exotropia (an eye swings OUT), they are much less useful for esotropia (an eye wants to swing in). Lateral rectus palsy is fairly common with us, actually. One patient I consulted with had a reversal of 17 prism diopters of esotropia (that’s a LOT). More importantly, as a symptom of high intracranial pressure, your doctor shouldn’t ignore the potential dangers of allowing your high pressure to continue. While you are working this out, you can drive with an eye patch on (you’ll want to get used to the lack of depth perception, however) or just close one eye as needed. Did you have fundus photos taken? An MRI of your head/neck performed? An MRV of your head and neck perhaps? Likely, signs of the pressure can be found in any of those images, but it can be subtle. Much like the exaggerated pictures of stretchy skin in EDS (which throws off doctors when ours is only slightly stretchy), the changes in the vasculature of the fundus (and in the optic nerve head) can be very subtle. An OCT can help, or looking for abnormalities in an MRV can provide the “evidence” needed. Your symptoms of hydrocephalus are also indicative of the problem, and your response to an overnight trial of the pressure reducing medication can also be diagnostic. Will you let us know? 😉I so appreciate you taking the time to reply Dr. Diana 🙂 I have had 6th cranial nerve palsy ruled out by two neuro-ophtamologists who sent me to this person as there was “nothing more we can do for you”. I have had many MRI’s, and have had scans of the back of my eye done but high ICP has not been picked up. I have stated that I have symptoms of increased ICP but have never felt “believed” by any medical docs. I do know that my symptoms of ICP fluctuates and it may be that it was not high when testing was done. I have tried Diamox since this problem presented in January and did not find relief.
I am on the waitlist for new MRI’s as it has been two years since my last one but in Canada it is about a 1year wait to get an MRI. The other dx tests you mentioned I’ve honestly have never even heard of or had suggested.
That is really good to know about driving with a patch. I wondered about that but was scared to ask anyone in case someone demanded I turn my license in or something. I have watched the driscoll theory and many of your videos. They are very informative and have given me a different understanding of why I have the symptoms I do.
I did call him back and ask him some specific questions about whether or not this would help someone with Chiari as I have ONGOING neurologic issues not recovering from a neurologic issue. He admitted he has not treated anyone with Chiari before but said he would consult with his network of docs and ask for input.
As this is the only option that has even been offered to me in regards to any kind of recovery I am wanting to try but worried it will not give me my vision back and it is not a small amount of money to someone on disability.
What?! You have an eye (or both eyes) that tend to turn in, but they ruled out lateral rectus Palsy? Well what the heck did they call it?! Did they offer you prisms for your glasses, or does it change too often? Perhaps it wasn’t showing when you went in? I had this symptom a few times, too, and was able to tell it was a LR palsy, but it DID go away. You may want to check with the rules in Canada, but here in the states, it’s no problem getting a driver’s license with one eye. Say, can you fill out the symptoms checklist I have on the site under “Articles and Handouts” (on the right hand side of the home page, scroll down a bit) and send it to me at Volunteers at Prettyill dot com? Please remind me who you are (so many patients). It may give me an idea of what is going on. That would be awesome. Now, Diamox. How much did you take and when during the day did you take it? If your checklist shows all of the symptoms of hydrocephalus AND you have diplopia (with tumors, etc ruled out), that may be something you can revisit. Thanks! 😉
Wondering if anyone else has been dx with this… I have had double vision on and off over the last 5 years or so especially after reading for prolonged periods or when tired. But since January everyday as my eyes fatigue my vision becomes double for distance vision. If I do any reading it will come on faster I guess as my eyes tire quicker. Usually by 1:00 or 2:00pm I can no longer drive. This is problematic as I am a single parent.
After many docs saying there was nothing to be done (I’m only 41)I have finally found an opthamologist that states he can cure this with in-office vision therapy + homework over the next 20 weeks. This is not covered by my benefits so will be very pricey hence my questions if anyone else has experienced this or had treatment work.
My history is complex. I have syringomyelia with a very long syrinx, tethered cord (detherered 4 years ago) POTS, Chiari zero, ?EDS (borderline on Beighton scale) and Cervicocranial instability. I have symptoms of increased ICP regularly. When researching this condition I was not surprised to see that blockage of flow of CSF thru the posterior cranial fossa is one of the possible mechanisms.
So my main question is if I go thru this therapy will this help me at all or will it just re-occur due to my ongoing pressure issues.
Any ideas appreciated! It is very traumatic to lose my vision at such a young age.
Oh my gosh, I’ve been trying to figure out the cause of my double vision, and I blame staring at screens at a close range. I made through MRI and blood tests, but the doctors (1 optometrist and 2 ophthalmologists) can’t figure out what’s wrong with me. I used to have exotropia, but now it’s esotropia. I also suspect some sort of divergence issues because I can see items at close range but not things far away. I guess that’s divergence insufficiency. I wear prism glasses while driving, but I feel like I need to retrain my eye muscles somehow.
I’m still trying to figure out what’s going on and am willing to go through intense vision therapy, though everyone says how useless VT is for my situation. I figured if my eyes got this bad, things can be improved.
Based on my doctors’ visits, it sure seems like I’m alone in this process, so I wanted to let you know that you’re not alone. The only difference is that my eyes get better as the day goes on, unlike yours. I am at a complete loss of what to do and am on a waiting list to begin vision therapy which won’t begin until next calendar year. I’m also in my 40s. Please let me know if you have a breakthrough. It’s been thoroughly frustrating at best.
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