Swollen optic nerve UPDATE

[maxaroni]

My DH was diagnosed with Papilledema, swollen optic nerve. Brain tumor, as well as a few other things have been ruled out. Need to see a neuro ophthalmologist for further testing. The hunch right now seems to be lack of blood flow to the optic nerve.
This has been beyond stressful, to say the least.

Anyone have this or know of someone that has had this happen?

 

[DVCjj]

I am SO sorry. Will keep you and family in my prayers.

My mother was totally blind from glaucoma so I’m insanely conscious of my optic nerve the 4 times a year I see ophthalmologist. I has never heard of that condition.

Hopefully it will be something like daily drops to keep that nerve from getting worse.
Hope you keep us informed.

Love going your way...

 

[LuvOrlando]

Oh I am so sorry Not sure where you are or if you settled on a facility but Mass General has an Eye Hospital, I was there for a weird side effect from a biologic where I had an eye sonogram and it was an amazing facility.

 

[StephMK]

No experience but I'm sorry you are dealing with this scare. I hope they can find and fix the issue.

 

[maxaroni]

Oh I am so sorry Not sure where you are or if you settled on a facility but Mass General has an Eye Hospital, I was there for a weird side effect from a biologic where I had an eye sonogram and it was an amazing facility.

Thank you. We are outside of Philly, in NJ. Philly has Wills Eye, which is supposed to be very good. I don’t doubt the care and expertise are good but their ER is not run well, in our experience, but that is another story. We spent 12 hours in their ER last weekend. A brain tumor was ruled out, as was a few other things. We were told to follow up with a neuro ophthalmologis and called the number they provided. Called multiple times each day and left messages. We were instructed to go back to the ER if it got worse. It did. We went back today and they can’t go any further with him as they do not have the proper equipment. He needs to see the specialist but no call backs. The ER doc said that he was appalled that no one called back. He got on the phone and supposedly someone will call us Monday. If not, we have the doctors direct line that saw us today.

 

[LuvOrlando]

Oh wow, that's terrible. Unreal that they didn't call you back right away. If it was me I'd head to U of Penn, they are so big they must have what they need 24/7, a week is way too long and the lack of follow up would give me pause. I hope things go ok.

 

[prairie_girl]

I am going to be Debbie downer for a second..I’m sorry.

Issues with the optic nerve are often the first sign of Multiple Sclerosis. Was that brought up at all? You mentioned that a brain tumour was ruled out..was that through an mri or cat scan?

I hope that it turns out to be just a one off.

 

[maxaroni]

Oh wow, that's terrible. Unreal that they didn't call you back right away. If it was me I'd head to U of Penn, they are so big they must have what they need 24/7, a week is way too long and the lack of follow up would give me pause. I hope things go ok.

U of Penn is our next call. We tried Cooper neur opthalmogy, received a call back who said they do not have the equipment and referred us back to Wills Eye. We will call Penn tomorrow. This is absurd. I won’t even get into the 12 hours we spent in the ER @ Wills. Horrible. I will say that the ER sent us away last weekend by saying to follow up within 2 weeks. NothIng else. We did call another Philly hospital as they have a neuro ophthalmologist but no call back. We called our local doctors as they are tied in with Penn, they recomended Wills Eye but didn’t go direct to Penn. We will call them tomorrow. I agree with you, it is just wrong and Wills Eye dropped the ball

 

[maxaroni]

I am going to be Debbie downer for a second..I’m sorry.

Issues with the optic nerve are often the first sign of Multiple Sclerosis. Was that brought up at all? You mentioned that a brain tumour was ruled out..was that through an mri or cat scan?

I hope that it turns out to be just a one off.

Not a Debbie Downer, I appreciate any and all thoughts or suggestions. MS was not mentioned, however, an MRI was done and nothing at all came up on there, No lesions or anything else.

 

[maxaroni]

Wills Eye finally called on Monday and DH was able to be seen today. He was diagnosed with NAION - Non-arterotic ischemic optic neuropathy. Basically, lack of blood flow to the optic nerve. Nothing can be done to restore the vision. However, we now have to learn to adjust and pray that the other eye remains safe.

We are going to go for a 2nd opinion with Penn. We talked with someone else who has this and they were dissatisfied with Wills Eye. They went to Penn who seemed to really listen to the patient and willing to try different things in his treatment plan. Vision can’t be restored but Penn has some things that they do to prevent it from getting worse, if treated within the first 14 days, etc.

 

[Pea-n-Me]

I second getting another opinion at Mass Eye and Ear. When the stakes are this high, you want to give it your all now and not look back saying, “I should have…”.

Ischemic Optic Neuropathy is listed here as something they specialize in:

https://www.masseyeandear.org/specialties/neuro-ophthalmology

 

[LuvOrlando]

Hi again, so deeply sorry this isn't an easy fix, heartbreaking. I actually know two people this happened to from migraine, and some people get migraine with aura without any headache pain so there are people with vision only migraine who don't know it. Not that it necessarily helps, many caregivers are awful with migraine and treat us like it's not a real thing, it's so poorly understood by even the best caregivers. I've had vision black out and peripheral vision go black from migraine and it was so scary, kept asking Dr's how to tell when it's not what's considered "normal" in the world of migraine and FINALLY had one neurologist tell me to get help if it lasts longer than 15 minutes. Not saying this is what happened to your DH, a Dr would need to say. It's terrible that you followed the rules for vision issues and did the best you could possibly do and this happened anyway, you guys didn't do anything wrong, it's important you know that Still maybe it can be undone.

Not sure how your insurance works but they totally have to let you get a second opinion. Mass Gen tends to take most insurance and more importantly, in my experience the excellent staff will fight for you getting what they think is necessary so that's valuable. It's never easy to travel for care but I do and it's worth it to me plus maybe you can do a virtual first visit and get an evaluation without travel expenses. If this is too far (although Boston is a lovely city to visit and maybe destress a bit) I'd suggest as a second to go to a place like New York eye and Ear Infirmary of Mount Sinai for the second opinion, another top tier facility.

Personally, if I think one facility is halfassing a thing or screwed up I do not give them a chance to double down on the mistake, I go totally outside the circle for fresh opinion.

 

[stars75238]

What are the symptoms? I woke up one morning about 7 years ago with an eye that seemed swollen - like it had happened overnight - many doctors later including an orbital specialist - they think it is an episode of Grave Eye Disease - also did MRI and ruled out a brain tumor. They expect me to be hyperthyroid, but thyroid tests have been fine - it's only one eye, but it can be painful. The bottom line for me is if I keep my weight a few pounds lights, I can avoid the pain - otherwise, I take Naproxen. Like I said, it's been over 7 years now - and MS was never brought up. I hope this helps. I also wonder if it is some weird take on an autoimmune condition - but as long as thyroid tests stay in range, and I manage the pain (hopefully without medications by keeping my weight just a few pounds lighter), I don't worry about it (other than in photos - I think it's so obvious LOL)

 

[mickeyboat]

I am with Pea and recommend MEEI. My daughter was diagnosed with Retinitis Pigmentosa 6-7 years ago and the symptom which made her eye doctor pay attention was a swollen optic nerve. She had an MRI to rule out a brain mass and MS, and then sought further evaluation with a somewhat local neuro ophthalmologist who made the initial diagnosis. It was confirmed at MEEI through laboratory testing and genetic testing. (Other symptoms included lack of night vision and peripheral vision). It was a scary time and I really feel for you. I will tell you that MEEI admin seems somewhat disorganized and an evaluation appointment takes an entire day because of how they schedule testing and consultations, but I do feel she is getting world class care. Sending lots of positive thoughts your way.

 

[maxaroni]

Thank you all for the thoughts and suggestions. His symptom is blurred vision in one eye, no pain. No headaches, trouble swallowing, no trouble chewing.

A friend of our son had the same issue in both eyes, but damage not as severe as in DH’s. He started at Wills Eye and was not satisfied, going to U of Penn. They were able to evaluate and had a different treatment plan for the 2nd eye, than Wills Eye did for his first. He was very pleased with Penn. DH called and spoke to someone and is going for a 2nd opinion. He was given an appointment and placed on the waiting list for a cancellation. It was a breath of fresh air to be talking to Penn. Our experience with Wills Eye was not a good one.

We’ve also thought of seeking out Johns Hopkins or even going up to MA. We have a friend in the ’burbs of Boston so it could be a visit to them and doctors appointment.

Nothing can be done for his right eye, that is permanent. We want to have a plan in place if this should strike hie left eye.

 

[DisneyMim]

I am also recommending Mass Eye and Ear. Just went yesterday for my annual exam. They are the best. Doctors are amazing and they have all the newest equipment.
Good luck!

 

[DisneyOma]

We’ve also thought of seeking out Johns Hopkins or even going up to MA. We have a friend in the ’burbs of Boston so it could be a visit to them and doctors appointment.

Nothing can be done for his right eye, that is permanent. We want to have a plan in place if this should strike hie left eye.

I second Mass Eye and Ear!