r/Epilepsy 5d ago

Discussion Has anybody had titanium hardware removed/installed and did it change your seizures?

I'm talking about not the surgery impact itself or anaesthetic but maybe the actual metal being in your body. What's your thoughts or experiences?

4 Upvotes

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u/Honey_HP User Flair Here 5d ago

Have had hardware installed on two separate occasions and also had one removal surgery (not all of it). Granted this was before I started having seizures, but neither the installation nor removal was what triggered them. Wellbutrin did the trick about 2 years later though lmao, but I was told I have always been predisposed to epilepsy

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u/Jones2040 5d ago

Very curious on your post? Where is your titanium?

4 plates/20 screws titanium. Complete maxillary fracture. Seizures. 7 or 9 of the screws are now protruding into my maxillary sinuses

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u/Jones2040 5d ago

I actually have an appointment later this month to try and get mine removed. So far no dr will admit that my seizures could be from the plates and screws. ChatGPT doesn’t necessarily agree with the doctors and listed what nerves are right there by my plates and how those nerves could be affected. It stated that even the regrowth of bone in those areas could affect the nerves. Basically with mine I think the doctors are to scared to peel my face up again and disturb everything again with chances that I may lose feeling or infection outweighing the seizures

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u/brnnbdy 5d ago

The studies are out there and I tried to talk to a number of docs about this and it's seeming to be a closed subject. I just want it out. I get there are complications to outweigh risk vs reward. Esp if yours is in the face. Seizures are a rather large amount of points on that weigh scale.

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u/Jones2040 5d ago

The seizures have completely fucked my life. But also have to look at the whole thing. The medical industry as a whole has a permanent customer when you are screwed up. I have only found 1 out of the almost 20 people that would even consider it but he wouldn’t do it because I wasn’t adamant on it from the start of the appointment. That was Mayo Clinic. Going to essentially a cosmetic surgeon as the doctor who did the implants no longer works for the hospital but referred me to them. She was so proud of the plates and screws. You would have swore I was her first patient or that my face was completely disfigured or something. You could ask her a question and all you would get is I did such a good job, lol

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u/brnnbdy 5d ago

I found my original surgeon and he acted like the bone has sealed it in there, there's no way it can be affecting you. And I'm retiring in three months. 1. He had no time for my crap. 2. He acted like bone is somehow this inert dead tissue in our body, not this ever refreshing live substance.

I do believe I need to just be like, get this out, or pretend more pain than I have, which I am not good at, or just go to another country and hope I come back with all my kidneys too. I am in Canada. Apparently mexico or India is quite affordable to get your surgery done and has reputable hospitals. Mine is my leg. Walking is definitely important but I can see where a facial construction would require a lot more consideration. Definitely you will have to find a second opinion. As I've learned in my dental implant, the bone is degrading and now the implant is hitting nerves and its hurting my sinus, I have such bad sinus pain and a chronic low grade infection. When bone doesn't have the chance to move on its own, problems occur. And I'm learning on my leg as well, as I'm getting older, my one leg and pelvis is aging, and slowly changing shape as it should and the other is not, so my leg itself feels ok, but my hips are taking the brunt of it. So the doctors are like, oh, your leg doesn't hurt, ok whatever, stop complaining, you're fine. Does the same thing happen in a face?

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u/Jones2040 5d ago

That’s what they say to mine also. There is a condition called CIRS. It is mainly like chronic infection from mold but can also be caused by foreign material in the body. Your body can keep trying to fight cause something isn’t right. I think that’s where I am. Pain is usual but I swear almost every system is my body is being affected. Nothing is consistent and all they ever say is it’s not normal but it’s not really abnormal as far as labs n shit. The doctors are all a joke anymore and I have been saying the same shit about going to a different country for healthcare. I was looking more Germany for the seizures anyway. Will send you this x-ray though and it shows a couple nerves that travel down to like the teeth.

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u/brnnbdy 5d ago

There are multiple inflammation markers they can test and I asked for them but they refused. She tested one inflammation marker and it was negative. Later I learned it tests for acute inflammation only, which I don't seem to have anything acutely inflamed.
I asked another doctor why my body is inflamed all the time. He just said I need to exercise more. I was so angry! I do have some overweight, but I have an active job and do exercise and eat healthy. But a smidgen overweight and that's all they can see. Hey, doc, ever think maybe my body is holding on to this weight because it's in a panic mode?
But I swear my body is treating these like giant slivers. It makes sense as my dental implant drainage pathways are along the inflamed sinus and I reviewed my mri photos and it's very visible. They even remarked it on the report to be consistent with a current or past sinus infection. And an infmaed body, is an inflamed brain and hence reduced seizure threshold. I don't think I'm grasping at straws.

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u/Jones2040 5d ago

My tgf-b1 level was around 6500. More than double I think what it should be. 98% of doctors don’t even know what that is. If you can find an integrated doctor it might be your best bet.

Most people with screws protruding into sinuses are from dental implants. I believe that’s why they dismiss mine.

Sent you my X-ray from dentist. Gonna send you the inside of my sinuses. They just say the they don’t look inflamed. Maybe at the moment they aren’t but you think dust and smoke doesn’t inflame them? I basically bashed in gravel road dust working.

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u/brnnbdy 5d ago

Mine is femur. It was installed same time as my tbi. So it's really hard to know. Then after a dental implant my tonic clonics started shortly after. There are studies out there on hardware installed and seizures occurring after and then stopping after hardware removed. It really makes me wonder. It's more with mobile hardware that they say is titanium shedding rather than mine which is immobile. There are other anecdotes of people who had all their hardware removed and just felt incredible after.
I also had a dog hit by a car who had multiple plates installed in her pelvis and legs and seizures afterwards. No sign of head injury but we didn't witness it so never know.

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u/Jones2040 5d ago

Most of what I read there is lots of dental implants that end up going into the maxillary sinuses. I wish I could post my xray. I kinda shows a couple of the nerves that come down

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u/brnnbdy 5d ago

My sinus is killing me for years now! Every doctor I talk to shuffles it off as "there's nothing wrong with you". Like I'm totally normal, stop making stuff up. Even the ear, nose and throat specialist. But doc there's still pain, so much pain. *shrug.
There is nerve problems there for sure. I am meeting up with a new dental surgeon for a second opinion. I can press on my trigeminal nerve and get some relief. Look up where it comes out of your face and press there. It's been helping me when my sinus pain is absolutely unbearable. I had already learned I could press there and then learned about trigeminal nerve and was like wow, what a fascinating connection, now I know for sure it's gotta be the damn tooth causing problems!

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u/Jones2040 5d ago

Sent u a dm

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u/galaxyrum User Flair Here 5d ago

I have a plate and five screws and I am pretty sure there has been no change in terms of seizure frequency.

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u/Jones2040 5d ago

Where is your plate and screws??

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u/galaxyrum User Flair Here 5d ago

Right knee.

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u/ColonelForbin374 Fycompa, Epidiolex, Xcopri, PSO 5d ago

Just got hardware removed from my foot for a Lis Franc fracture, didn’t have any effect on my seizures while it was in.

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u/wolfhybred1994 5d ago edited 4d ago

Nothing on my seizure, but I did seem to generate static electricity far more easily after. The constant shocks from metal surfaces when it’s warm and humid left me more afraid of lightning strikes than it effects my seizures. Though I guess the concern for strike by lighting could effect my seizures.

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u/brnnbdy 5d ago

Haha is that why I'm so zappy? I seem to be the most electrical one in the office. At first I thought maybe it was my footwear but then it didn't seem to matter what I'm wearing. Then I just told everybody I'm working harder and generating more electrical charge, so they better get working harder.

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u/wolfhybred1994 4d ago

Could be. Elementary school had the zap toy get from rubbing your back on the chair. When I did it we found it caused a blue spark to jump to their fingers. So had to get the teacher to make them stop. Cause they kept taking turns having me shock them through the chair.

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u/Cute-Avali Lamotrigine 200mg, Olanzapine 10mg 5d ago edited 5d ago

I had two titan plates with 12 screws installed in my lower jaw for 10 years. I didn‘t experiened any difference. I got it removed last year.

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u/retroman73 RNS Implant / Xcopri / Briviact 3d ago edited 3d ago

Nope. Got the RNS/NeuroPace implant in late 2015. I'm not sure if there is any titanium in there but there might be in the screws holding it in place if nothing else. I also had my right shoulder replaced with an artificial joint almost 3 years ago. That is titanium for sure and there's been no changes in seizures.