Being a pirate is overrated (1 Viewer)

[marcfj60]

On Friday, 2/9, I started having double vision. It had not resolved by Monday and enough people hounding me convinced me to go to the ER. So I went to Lovelace Downtown ER, got a CT scan, 2 MRIs, chest Xray, EKG, and about a gallon of blood drawn for various tests. The diagnosis is paralysis of the 6th cranial nerve. It means that my right eye doesn't have full range of motion, especially when I look to the right. The good news is that none of the scans or blood tests showed anything scary as the cause. No stroke, MS lesions, masses, tumors, undiagnosed auto-immune conditions. The bad news is they don't know what caused it. It's been over a week now and I'm trying to get used to seeing with double vision or with no depth perception when I wear an eye patch. There is no treatment for it. I just have to do some eye exercises, swap the patch back and forth between the eyes every 2 hours, and hope to regain full function of the nerve/muscle/eye over the next few weeks to few months. Needless to say, the eye patch part of being a pirate is not enjoyable.

 

[DrDuc]

I’m glad that they haven’t found any of the scary causes, but damn, I imagine that what you are going through is more than a little unsettling. I hope that it clears up soon. I’d also encourage you to read up on or watch some videos on neuroplasticity, especially its role in recovery from things like strokes. Keep trying to move the eyes through their range of motion and work on convergence exercises. If there are any optometrists in your area trained in teaching eye exercises, they might be able to give you some helpful guidance.

 

[marcfj60]

I’m glad that they haven’t found any of the scary causes, but damn, I imagine that what you are going through is more than a little unsettling. I hope that it clears up soon. I’d also encourage you to read up on or watch some videos on neuroplasticity, especially its role in recovery from things like strokes. Keep trying to move the eyes through their range of motion and work on convergence exercises. If there are any optometrists in your area trained in teaching eye exercises, they might be able to give you some helpful guidance.

There was an OT at the hospital that gave me a list of range-of-motion and convergence exercises. I see my PCP tomorrow and am wondering if there is value in trying to get in to see a neuro ophthalmologist. My regular optometrist did not want to see me.

 

[DrDuc]

There was an OT at the hospital that gave me a list of range-of-motion and convergence exercises. I see my PCP tomorrow and am wondering if there is value in trying to get in to see a neuro ophthalmologist. My regular optometrist did not want to see me.

A neuropathologist might be able to help, but I would still look for an optometrist who is trained behavioral optometry - I know that the ones who trained at Pacific University in Forest Grove , OR received that type of training. OTs get some training in it, but not as much as the behaviorally trained optometrists.

 

[Dumpolina]

Kevin sitko UNMH but also Eye Associates

Kevin Sitko

Dang, sorry you are saddled with this! Best of luck Marc!

 

[89BIGBLUE]

I can only imagine what this might be like to experience.
I might suggest Dr. Cohen at InVision if you don’t find any other leads.
She specializes in optometry and behavioral optometry OT for CHILDREN.
I’ve seen all kinds of kids there doing different OT when I’ve stopped in for an eye exam.
Even some kids with patches, so you could find some other pirates!

 

[marcfj60]

Kevin sitko UNMH but also Eye Associates

Kevin Sitko

Dang, sorry you are saddled with this! Best of luck Marc!

I got a referral and appointment with Sitko. Too bad I have to wait 4 months to see him. Stupid state of health care in NM means no specialists want to live here and thus not enough to go around for all the people.

 

[DrDuc]

I got a referral and appointment with Sitko. Too bad I have to wait 4 months to see him. Stupid state of health care in NM means no specialists want to live here and thus not enough to go around for all the people.

Wow! That kind of wait sucks. I would strongly recommend that you read the book, “The Brain’s Way of Healing,” by Norman Doidge, MD. “The Brain that Changes Itself,” is another of his books that has a ton of info in it that would be relevant to your situation.

 

[Dumpolina]

I got a referral and appointment with Sitko. Too bad I have to wait 4 months to see him. Stupid state of health care in NM means no specialists want to live here and thus not enough to go around for all the people.

Agree 100% but it’s not just here. Yes I schedule my annual with him when I see him. FWIW Eye associates were good about contacting me when he had cancellations when I needed to see him once… iirc they scheduled me several months out and called me a couple of weeks later with an opening

 

[pappy]

I got a referral and appointment with Sitko. Too bad I have to wait 4 months to see him. Stupid state of health care in NM means no specialists want to live here and thus not enough to go around for all the people.

No joke? Sounds like things have not improved. Twenty-five years ago there was only one neurosurgeon in NM. When Nylia had her second surgery I made it clear to the insurance company that the clown that paralyzed her would not be touching her. We went to MD Anderson.

 

[peneumbra2]

I had an MRI in January which showed a likely melanoma attached to my left eye. Two weeks later, I was in Mayo Clinic Scottsdale being prepped for the installation of a radioactive patch that would remain on the eye for a week.

Had the install on 7 Feb, stayed at a hotel in Scottsdale for a week, and the patch was removed on 12 Feb. Not a pleasant procedure. The melanoma is disappearing, but vision in the left eye is pretty bad. Hopefully it will improve with time.
The other alternative was to remove the eye entirely...

 

[marcfj60]

Agree 100% but it’s not just here. Yes I schedule my annual with him when I see him. FWIW Eye associates were good about contacting me when he had cancellations when I needed to see him once… iirc they scheduled me several months out and called me a couple of weeks later with an opening

I asked if I could be on a cancellation call-back list. They said they don't do that and I would have to call back regularly to see if a there was an earlier appointment available.

 

[marcfj60]

I had an MRI in January which showed a likely melanoma attached to my left eye. Two weeks later, I was in Mayo Clinic Scottsdale being prepped for the installation of a radioactive patch that would remain on the eye for a week.

Had the install on 7 Feb, stayed at a hotel in Scottsdale for a week, and the patch was removed on 12 Feb. Not a pleasant procedure. The melanoma is disappearing, but vision in the left eye is pretty bad. Hopefully it will improve with time.
The other alternative was to remove the eye entirely...

Oof on the diagnosis. I'm likely going to reach out to Barrow and Mayo in AZ to see if I have any better options for seeing someone sooner.

 

[Dumpolina]

I had an MRI in January which showed a likely melanoma attached to my left eye. Two weeks later, I was in Mayo Clinic Scottsdale being prepped for the installation of a radioactive patch that would remain on the eye for a week.

Had the install on 7 Feb, stayed at a hotel in Scottsdale for a week, and the patch was removed on 12 Feb. Not a pleasant procedure. The melanoma is disappearing, but vision in the left eye is pretty bad. Hopefully it will improve with time.
The other alternative was to remove the eye entirely...

Holy cow! So sorry you’ve going through that, sure wish you a complete recovery! Best of luck!

 

[Dumpolina]

No joke? Sounds like things have not improved. Twenty-five years ago there was only one neurosurgeon in NM. When Nylia had her second surgery I made it clear to the insurance company that the clown that paralyzed her would not be touching her. We went to MD Anderson.

So tragic, Jon. She struck me as such a great person the few times I truly had the honor to encountered her. Care was such a gamble then, agreed it still is

 

[peneumbra2]

Holy cow! So sorry you’ve going through that, sure wish you a complete recovery! Best of luck!

EYE sure hope so. Get it? GET IT???
Okay, that's enough.

 

[peneumbra2]

Oof on the diagnosis. I'm likely going to reach out to Barrow and Mayo in AZ to see if I have any better options for seeing someone sooner.

Mayo Clinic Opthomology Dept is 480.301.8085. Tell 'em I sent ya...

 

[peneumbra2]

Let me know if you're going to be seen at the Mayo. Probably the best option for eye issues (and a lot of other things)...

 

[marcfj60]

Let me know if you're going to be seen at the Mayo. Probably the best option for eye issues (and a lot of other things)...

I sent in my online request to be seen at Mayo earlier this week but haven't heard back yet.

 

[alia176]

Another potential place if Mayo doesn't accept you: Barrow Neurological Institute - https://www.barrowneuro.org/