Hello. My son had a brain aneurysm in 2017. Since at least 2019, he had this weird bump growing on his upper eyelid just below his eyebrow. At first his general doctors would give him antibiotics, but it would return. No one ever tried to figure out what the cause was. In January of 2020, an eye doctor said it was fatty tissue and cut the bump open, figured out it wasn’t, and burnt too much skin he couldn’t close his lid completely. Then an ophthalmologist did surgery to correct it. Still no one has even looked at what is causing the bump. The bump gets swollen, bust, drains blood and puss, scabs and repeats. A few months back my son was messing with the wound and felt something hard and a screw came out. The neurosurgeon confirmed it was one of theirs but did an MRI but said the plate was fine and referred him back to the same ophthalmologist for the bump on his eye. There are no appointments for months, meanwhile my son has a fistula now on his eye that constantly drains. His eyelid has contracted so much he may never be able to close his eye again. He just saw a different ophthalmologist yesterday because we can’t get in to see the other and he told us to have reasonable expectations. I even called a malpractice attorney but they didn’t think I have a case. I thought having an infection close to the brain is bad. He has a shunt too. No one will figure out what is causing this constant infection and I don’t know what to do or who to go to for help at this point. Has anyone ever experienced anything similar and were the doctors able to fix it? Thank you
@gycb does your son have a Carotid-Cavernous fistula? If so, did he have it before or after he went to the neurosurgeon? Or did you just go to the neurosurgeon? Who diagnosed him with the fistula? What did the second ophthalmologist mean when they said you had to have “reasonable expectations”
Or maybe it’s not a istula but a stye on his eyelid?
A lot of questions, I know, but I think for members to share their experiences, it may help.
All the best,
Here is a pic. The black eye was a different matter but that’s when we saw a maxillofacial specialist in the ER who diagnosed the fistula. When we did the follow-up with the maxillo, he referred us to the second ophthalmologist because the first would take months for an appointment.
The way the wound looks is at a stage right before it bust open completely, but its always oozing a little. Then it will scab and repeat. That is also where the screw came out of.
That was my question about what reasonable expectations. My understanding is what he can do about the eyelid because it’s retracted so much, but even he doesn’t want to touch it because of my son’s medical past. He actually kept asking how we ended up with him. It was frustrating because my son was Facetiming me in since I was at my own appointment.
No one has said anything about it being a stye. It’s been there for at least 2 years. I believe it was caused by the screw that was working it’s way out of it. Once the screw came out, I was hoping it would heal completely but its hasn’t. The pic I’m attaching is post exit of the screw. It’s a lot of info, I’m sorry, but thank you for even listening.
Boy does that ever look painful, ouch! Because I’m older, initially I thought, put a steak on it. My oldest brother would get into brawls every now and then, not often and he always put a steak on it, until Mom told him he used his dinner.
Not a stye, those are like pimples on the eyelid where your eyelashes are. I used to get one at the same place. I had to get the surgical ophthalmologist to remove something else and haven’t ever had the stye again,
I did read up on fistulas because at first I thought they were boils and found this article from healthline Carotid-Cavernous Sinus Fistula: Types, Symptoms, and More
But I’m not sure it’s the same thing. Everything I read would suggest that a neurosurgeon has to fix a fistula. Did the neurosurgeon call it a fistula as well? Did the ER doc or the ophthalmologist suggest what to do besides the course of antibiotics? Like a warm compress to help the draining? I wonder if the screw coming out caused his body to attack the place like an infection. I’m at a loss on what to help you with…so I’m thinking out loud.
I think it’s good that you’re fighting for him not to get lost in the cracks. I think someone needs to explain fistula better and what he is supposed to do about it. Did the second ophthalmologist really ask how you ended up with him? Did he mean your son? If so, I can think of 4 ways parents have children and I haven’t had my morning coffee yet.
Wish I could help more, hopefully those who’ve had craniotomies will add their knowledge and experience.
I had a screw loose too. It was in the back of my head though, but it hurt. I thought my skull was coming apart. My neurosurgeon’s nurse told me to feel around to see if it felt like a screw. I had surgery almost immediately to have it and the quarter sized plate removed as my skull had healed and reconnected. Are you saying the screw worked it’s way out on its own? Yikes. Have they x-rayed it, to see if the plate is coming loose too? (or another screw) Each plate is attached with 4 screws. Have you seen a neuro-ophthalmologist?
By the way Moltroub, a stye is a clog of the meibombian gland- which produces a filmy substance so your tears don’t evaporate. These glands line the upper and lower eyelids. If you suffer from dry eye or get many styes it could be a meibombian gland dysfunction which is resolved by low dose doxycycline. Another problem of mine.
Yes, the screw worked it’s way out of the eyelid. They did an MRI to make sure there were no concerns with the other screws or signs of infection. However, we saw the neurosurgeon today and it seems there may finally be some movement. We were told that the likely scenario is that his bone flap is unhealthy, which has caused the screw to come out and also explains the chronic infection. My son is being referred to a plastic surgeon to see what can replace the bone flap. As you can imagine, we have a few more obstacles ahead of us but I am so relieved that they are no longer dismissing him. Sadly, it only took 2 years. Thank you everyone for giving me a safe place to vent.
@Alice3 I am so glad you can remember these things, you’re a wealth of information! After the ophthalmologist surgeon removed the mole thing, I can’t remember the name, but the dermatologist said it wasn’t a mole, my stye has never come back. The ophthalmologist I see didn’t tell me good directions on one of the eye drops he had prescribed and apparently I used it too much though I followed the directions on the prescription. So he ended up giving me another prescription eye drop when I couldn’t see. He’s gone into preservative free eye drops and I have to use one prescription and one otc. Dry eyes certainly make photophobia much worse don’t they?
I recently purchased Neurolense glasses to help with my light issues. They are expensive but well worth the price. I am walking daily (with trekking poles for balance)
wearing these glasses and of course a baseball cap (that says “Love Everyone”).
I don’t know if I told you I had a detached left retina early in my recovery and had sclera buckle surgery. I use Lotemax ointment and restasis in this eye, as well as OTC Refresh Advanced single vials, no preservatives. I, like you, also used the small bottles initially that do have preservatives. I felt like I was being stabbed in the eye. This was when I learned that because the amount of eye drops I use, they must be preservative free.
I use the Restasis as well now. The ophthalmologist told me on my last visit to just put the vial in a medicine bottle or something and I could use them until the vial is finished instead of throwing them away. He didn’t warn me about how expensive it would be, but I didn’t blink when I bought my 90 day supply . I also use the Systane preservative free vials and now keep them in a medicine bottle instead of tossing them after one use. I use one of the dog bottles because they’re blue and one of the amber ones from mine, it helps me to remember. I wear prescription sunglasses all the time they are Costas because their dark amber has worked better for me over the last few years. I will have to look into the Neurolenses. I used to use a trekking pole but do t need one most days now. I do keep a couple of branches in various places in case I need one doing walk about sin the yard. We have lots of trees.
Thanks for the information!
Let me share my story, post aneurysm surgery was incredible bad.
I lost my right side (I could not control), I could not sit and stand. I could not talk and swallow and drink and eat. So you could imagine that. My aneurysm hit my brain steam. No medicine could help me.
Also, my right eyes was looping.
Probably you need to try to make juices such as celery, carrot, kale etc.
Something that is good such as for inflammation, immune system, etc
I drank twice a day. My right eyes opened. Yeppers!
Also, I gained weight more and more. I could not stop it. How could I stop it if the brain damage is damaging my system.
I did a plenty of fruit juice such as cantaloupe, melon
Of course, I prayed for His help!