Post Surgical Headaches - Suggestions for Deal

Thank you so much for all the info!! I will definitely be looking into this more and see if it feels right for me.

I actually moved to NC a couple months ago. My neuro opthalmologist said I need to find a neurologist for my migraines down here. I really thought I was going completely blind a couple weeks ago, but it was linked to a migraine. Johns hopkins was able to get me in on a Monday morning after I called them the previous Thursday. I’m so grateful to have those doctors, but to fly up to see a neurologist at Johns Hopkins we agreed was not an option. Of course I’ll still fly up to see my neuro opthalmologist or neuro surgeon!!

I’ll see if maybe whoever I find down here for a neurologist can recommend anyone. Also, I’m looking into those FL-41 glasses!

Judi, thanks so much for this tip! This is the kind of tip that is very, very difficult to find. I did a lot of Google research and talked to about 4 optometrists and no one ever suggested this. I found this link: FL-41 Prescription Glasses For Migraine And Light Sensitivity Relief, but I am definitely going to look into this more.

Thanks!

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Neuropsychology link very helpful. Thank you.

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I just found out about them a few months ago and even most ophthalmologists offices don’t seem to know what they are. But when they call their labs they find out the tint can be added to any new prescription. It only added $20 to my total so it’s even very affordable. But it takes a little longer to get. If you have contacts or don’t need a prescription you can get basic ones online easily for indoor use, and even sunglasses for outdoor use.

They are pinkish but be sure you get real FL 41s, not just rose tinted glasses which are of no use except for looks. And be prepared to look like Bono, lol - they are what he is known to wear!

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I saw a really good Neurologist here but he moved and they wouldn’t tell me where he moved to, the ladies said they didn’t know, one said she thought he moved to the Eastern part of the State. His name is Krystof (spelling is probably wrong) Romanowski if Dr. Romanowski moved to your part of NC, he would be the one I’d recommend. I’ve never seen the Neurologist they replaced him with. For some reason he couldn’t see me, they said he wasn’t qualified. Then they kept rescheduling me. But I’ve done really well with his NP. If you live in or near any of the big cities, you shouldn’t have any problems finding one. The hard part could be finding one that is accepting new patients.

Sorry, research junkie in the room. :rofl:

Presuming this is the right guy (with that name…) looks like he is now down in Charleston.

Krystof Romanowski, MD

I also checked the SC Board of Medical Examiners just to confirm he is licensed there, and of course he is in good standing. :slightly_smiling_face:

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Like @Moultroub, I had a really challenging time getting an appointment with my new neurologist. (Appointments were about 5 months out for many practices, the worst being about a year!!) I finally learned to stick with calling only locations that consist of a group of neurologists since they can schedule you more quickly than a smaller group. Persistence did pay off in the end! :slightly_smiling_face:

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Thank you for that research! Too bad Kiva Han closed down in Charleston, it was my favorite place to get eggplant exactly like Mrs. Bongiorno’s mother made when I was young. I’d climb a four foot chain link fence then a six foot with the puppy we kept from the litter to visit her Dad. They spoke Italian, I did not but we’d spend several hours in his garden and sitting on the steps to the patio watching the puppy play. He always had her fry some eggplant. Guess who learned to climb chain link fences?:rofl:

Judi, I wanted to thank you for your tip about FL-41 glasses.
I have a very good ophthalmologist here in Seattle and she “knew” about them, but even had to do some research with her lab to really de-confuse the issue.

But thanks to her research, I now have 3 new pairs of glasses (all different) and I think they really do make a difference in my brain health. My headaches have decreased significantly.

I will come back here to re-post the exact specifications on these glasses, but I wanted to post some pictures first.

The deal is that MOST eyeglass places will tell you “Oh, yes, we have blue blocking.” And they will charge you about $150 extra to add that to your prescription.

But here at Wallingford eye care they had a little blue light flashlight. They shone this blue light through the lens on my old computer glasses with the coating. The blue light went right through the lenses with the blue light coating.

Then she took some lenses with the blue light filtering “baked in” to the lens. THE GOOD LENSES WILL ALWAYS HAVE A TINT TO THEM! (See the pictures. They are not just “tinted” they are made from a composite with the blue light filtering baked in.)
She shone the light through these lens and it was very easy to see that the good lenses stopped the blue light completely.

Here are pictures:


Above: on the left is a pair of glasses with both blue light filtering AND FL-41 (Fluorescent light filtering BAKED-IN, not just a “coating”. On the right are my computer glasses with JUST the blue light filtering. If your glasses don’t look like this, you don’t really have blue light filtering or fluorescent light filtering. If your lenses are clear, you just have a “coating” and not the really effective filtering.

Here is my third pair:


Above; on the left again if the FL-41 plus blue light filtering. On the right on my reading glasses which I really like. The reading glasses, which have sort of a smoky tint to them are also blue blocking, but a lens manufacturer which my eyeglass place discovered at the last minute.

All of these glasses have to be special ordered and I had to wait a couple of months while the lab made them.

I’m will return to this post and post the exact brand names, because there are only a few labs in the country that make them. They only make them to order, and I believe they only sell to ophthalmologists. You can’t buy them yourself (not in a prescription lens.)

The idea with the FL + Blue blocking (the glasses on the right above) was to help me with the glare from driving but ALSO for going to grocery stores or places where I got stuck with florescent lights (e.g., libraries). I DO really like the FL-41 + Blue blocking combination. The way the FL-41 sharpens things is mind-blowing.

However, I am less satisfied that these “walking around glasses” are progressive lens. Progressive means sort of like bi-focals: different areas in the lens have different prescriptions. The progressive aspect does NOT seem to be good for my brain. My eyes just can’t get figure out which part of the lens to look through.
These progressive lenses are not bad when sitting in a group I and looking at people across the room, but in another place I wanted them for, doing dishes in my fluorescent-lit kitchen – they give me a headache. There is something about looking up and down at the dishes that kills my brain, even though they do a great job of blocking my overhead light.
So I am thinking of returning to the store to get the exact same kind of lenses, but in a non-progressive version.

So I will try to dig up the brand names of these lenses and I will return to this post.

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Thanks Charles! I used to have progressive lenses prior to rupture and having to learn how to tip your head instead of just looking was a couple week learning curve. After rupture, I donated them. I’ve got my optometrist appointment this month and will be interested in what you post!

Charles, so glad these are helping you. They’ve had a big effect for me as well. I also now use both blue light and FL 41s, and my sensitivity seems to be dropping with continued use. I’m trying to dig up info on a new lens, Avalux. They are crazy expensive (about $1k on top of the price of rx lenses, and mine are progressive plus high index, so they are already pretty pricey). However the only personal recommendation I’ve gotten is very negative, so I’m unwilling to put out that kind of money unless I hear some unbiased positives. If I get bad again I might consider a fitover as a test, but I’m doing well enough now to wait and see on those.

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Judi I am working on digging up the brand names of my lenses, but I’m pretty sure that Avalux is the name of the gray tinted lenses in my pictures above.
They were more expensive, but I had good insurance and I worked with very good people at Wallingford Eye Care in Seattle.
With my insurance, the glasses in my pictures above (three new lenses and two new frames), cost about $1,500.
But like I said, good insurance. I’ve been lucky.

(Just to be clear, the $1,500 was cash out of my pocket, in addition to what my insurance covered. My insurance likely covered 1 pair of lenses and 1 pair of frames. So the $1,500 covered two more pair of lenses and 1 pair of frames (I reused a previous frame.)
I am also kind of fussy about my frames . . . so I got an expensive pair. The Progressive FL-41/ blue-blocking frames in the left picture above are made of titanium. I figured there’s a chance I might be driving with them and they would be rattling around the car. I am kind of hard on my glasses.)

So all told, getting re-fitted for glasses after brain surgery probably cost $2,000 cash plus insurance.

However, it was worth it. I have less headaches. I am working full time and I can do that without getting head-aches now. Big quality of life improvement.

Although my surgery was in October 2022, I still feel like I am recovering from it.
I am currently looking into something called lymphatic drainage massage. There is a chance that the aneurysm swelling might have blocked some tissue drainage around my left ear. A massage therapist I trust said she felt a lot of fluid around there. Here is a link to this treatment:

If this proves interesting, I will make another post on it.

But I wonder if other people who have had aneurysms experience hearing loss. It seems like there must be some brain swelling due to the aneurysm and maybe my swelling never went down. I will post more on this if people are interested.

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That’s fantastic. Let me know what you think of them, especially the Avalux.

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Well, here are the only details I can get from my Optometrist:

"Avalux offers frames with FL-41 tinted lenses, however the glasses you received from us had the lenses specialty made. I’m unfamiliar with the specific details of the Avalux brand, but they are functionally the same as what was made by our manufacturer. I would recommend that those interested in glasses for headaches/light-sensitivity should ask the optometrist or optician at their eye clinic about having lenses made with this specialized, FL-41/blue-light blocking tint. This is because oftentimes, the frame brand has little to do with the kind of lenses made.

I hope that provides some clarification!"

I do recommend Wallingford Eye Care in Seattle, Washington. Lenses & Coatings - Seattle-Wallingford, WA
Their service was quite professional and I felt like I was being paid attention to as an individual.
In particular, there is a technician there by the name of Barbara who had worked with brain injury patients before and she gave me very, very good advice and help. She was very familiar with the problems we discuss in the forum, and steered me in the correct direction.

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Good info, thanks. Sounds like you have a really great source for those in or around Seattle. I struggled last year to get anything beyond basic blue light locally and felt like I hit the jackpot when I scored FL-41s! However I can drive again and source the Avalux’s from same Doctor that initially told me about all these great lenses. It’s inconvenient but so far the relief I’ve gotten from that one trip to see him long ago is immeasurable.

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