Tarasa10

Optic Nerve Swelling and MRI

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Hello all! I’ve posted on here before, but under a different name. I forgot all my information ? 

I’m going to start from the very beginning. 

About 5 months ago I developed a ringing in both ears. I immediately was worried I had a brain tumor, and rushed to my PCP. She did a mini neurolo exam, which was fine. Told me I did not have a brain tumor, and sent me on my way. Well the ringing never really stopped but did change. Now it’s not so much a ringing but like a static noise or white noise. I learned to cope with it. But about three weeks ago I started seeing flashes of light in the corner of my eye that looked like sparkles or like a ring catching the light. It would only last a few seconds. Or sometimes I would see like a little flicker of light in the same eye...in my peripheral vision. Almost like when your eye twitches. It didn’t disrupt my vision, or anything. But it still freaked me out.  About two weeks in, i saw my eye doctor. I haven’t had an appt there in years, and she dialated my eyes and said she saw something in my retina but she couldn’t tell if it was a tear or traction in the jelly. She referred me to a retinal specialist. I saw him and he said he did not see a problem with my retina but I did have optic nerve swelling in that eye and a little my other eye. He said he thinks it could be something called pseudo tumor cerebri, or idiopathic intracranial hypertension which isn’t a real tumor but causes tumor like symptoms. He immediately ordered me a MRI which I had on saturday. But of course I won’t get the results of that until my appt on the 15th. I AM FREAKING OUT. The fake tumor does not scare me. But I know optic nerve swelling usually is caused by intracranial pressure, which is often caused my brain tumors. And that is scaring me so much!!! Idk what to do. When my eye doctor told me it could be a retinal tear I was scared but I was not thinking brain tumor. She never mentioned anything about my optic nerve being swollen. Has anyone else had optic nerve swelling caused by anything other that a brain tumor or a pseudo tumor? I can’t find anything online about it. My blood pressure was also high the day I went to the specialist. Could that be the reason?

 I’m constantly crying. And feel like I’m going crazy. Idk how to get through this week  

The retinal specialist told me he fully expected that my MRI results would come back clear. And does not believe it’s a brain tumor, but I keep thinking he must have some suspicion to order something like an MRI  

I have had no nausea, some slight headaches, no cognitive problems. I do have headaches behind my eyes, but I also have sinus issues, and had a really bad sinus infection before all these sparkles happened. Everyone keeps telling me it’s not a brain tumor. But I’m so scared my MRI will find one. I feel like I’m living in a terrible dream. I never thought this would happen. 

I should also mention the sparkles have since gone away, but the side eye flickers still happen. I hope I’m making sense. I’m so scared. He told me he would call me if it was something serious. And I’m just a mess! I just graduated college and started a new job, recently and I feel like I just got slapped in the face. I’m only 26. I’ve been married almost 2 years. And I feel like my life is over just when it just got started. I feel helpless/hopeless. 

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Hi! I have PTI (or IIH) and I am happy to answer any questions you may have! 

My doctor has never mentioned my retina at all so I am not sure what they mean by that. Doctors have to order the MRI in order to start you on a PTI diagnosis to rule out anything else. They order it expecting a clear MRI. I have had several brain scans in the last year and expect another one this month. If your doctors are repeatedly telling you it doesn't sound like a brain tumor, you should believe them. Doctors are surprisingly cautious, and don't just say things just to say them. 

So you say a couple things here: the subject of this says "optic nerve swelling" and then you say no doctor has mentioned that to you. Did the retinologist see a tear? Did they identify a structural cause for the flashes and flickers? One of the most diagnostic things in PTI is optic nerve swelling caused by increased cranial pressure. 

Incidentally, though, I was finally diagnosed last year in August. This was after YEARS of symptoms that were always too vague for doctors to ever put their finger on. It wasn't until my eyesight started to go in June/July that a trip to an optometrist first showed indication that something was wrong in my head. Leaving the optometrist - who refused to say anything more than cryptically telling me "Your optic nerves are severely swollen - this means that there is something on or near your brain that is pushing on them" - was the most terrified and depressed I had ever been. I wept in the parking lot and barely was able to drive home. I couldn't get out of bed. It was the worst feeling I can imagine. I feel your pain and I am so so sorry. Please believe me that you are many many times more likely to have something very benign and feel comforted knowing that you have doctors working on this for you now.

I have a wonderful neurologist whom I was very upfront about my health anxiety with and he said probably the most comforting thing a doctor has ever told me. He said, "I know you are scared and I am sorry. The good news is this that we are working for you now and you can give us (talking about him and my ophthalmologist) your fear. We are worrying about it now FOR you."

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Hi! Thank you so much for replying! So I actually got a call from my Ophthalmologist’s office (the nurse called me, not the doctor he wasn’t there, so sadly some I my questions were left unanswered).. they said the MRI was fine. No brain tumors, or anything. But they did find abnormalities in my MRV. She told me what the MRV said exactly but it was something to the effect of “flow abnormalities vs. occluded sinus thrombus” (I wrote it down but currently don’t have the paper in front of me. She did not know what any of that meant... which I get. She said it could something was causing the obstructing the blood flow. 

They made me an appt with a neurologist this week. And at first I was super relieved it wasn’t a tumor. But now I’m worried again. I’m afraid of getting blind sided again. 

The only person that thought it had anything to do with my retina was my optometrist. The ophthalmologist didn’t see any problems with my retina! 

I did a little googling, which is bad, but obviously something is going on. And something for PTC came up! Which if that’s what it is, I can handle it! But I’m worried about blood clots, or something. 

Do you know if you had any problems with the veins in your brain due to the PTC? 

Thank you for your help! 

It’s so awful being left in the unknown!!!

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No, unfortunately, I don't know. In fact I have a neuro appt tomorrow because I am definitely having some facial nerve issues that worsen with exercise (which, of course, I have health anxiety so I am making that ALS) which could be related to something vascular. 

If you've done some reading about PTC, I'm sure you've seen that they don't know a ton about it. Sometimes there is involvement of the veins and I think in those cases, stents are recommended. A ton of people who have this have shunts or stents, but so far my doctor has not recommended that for me. I am on Diamox and if I can't get my papilledemas to calm down, they are probably going to perform a minor surgery called optic nerve sheath fenestration.

Your neurologist should order a lot of tests. If he suspects PTC, he will order a lumbar puncture. I wish you all the luck! Take your relief that you don't have a brain tumor! You also don't have an aneurysm, which would also show up on an MRI! You are doing everything you can and you are in good hands. PTC is a pain, but OMG, I was so relieved to get this diagnosis. I know for some people it becomes a disabling disease, but it seems like those are very rare situations. Almost everyone I've talked to with this diagnosis lives a very normal, slightly head-achey life.

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Thank you so much! 

I’m still very scared. I have myself convinced the doctor didn’t want to tell me I had a tumor or had his nurse do it, and she misread the MRI. I got a copy of the MRI and MRV (they scanned my brain and my eyes, plus the veins). Well, I only have the report for the eyes not the brain and I’m so so so so so so freaked out. I misread it at first and thought it meant for my brain and eyes but I was wrong and now am worried she read it wrong too. 

I’m trying to tell myself if it was serious the doctor would have called himself. But I’m totally panicked again. I don’t know what is wrong with me. I’m scared of being blind sided going into the neurologist. And I’m paranoid. 

I hate this! 

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I really hope all your tests come back okay! I have had the ALS fear before. It’s the worst, I think!

 

Honestly back in Sept when this whole brain tumor obsession happened... I kept going back and forth between brain tumor—ALS— brain tumor— ALS. I had twitches all the time as well as muscle jerks... and was just terrified. My doctor put me on anti anxiety medication and I saw a therapist. I did feel better for awhile, but it was like it just lingered... no matter what. And I often question my sanity. Like if I’m making things up or if they are real. 

 

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20 hours ago, Tarasa10 said:

I really hope all your tests come back okay! I have had the ALS fear before. It’s the worst, I think!

 

Honestly back in Sept when this whole brain tumor obsession happened... I kept going back and forth between brain tumor—ALS— brain tumor— ALS. I had twitches all the time as well as muscle jerks... and was just terrified. My doctor put me on anti anxiety medication and I saw a therapist. I did feel better for awhile, but it was like it just lingered... no matter what. And I often question my sanity. Like if I’m making things up or if they are real. 

 

Yes! It's very frustrating to not know your own capability for making things up. It makes me scared about getting older - will I ignore things I should pay attention to because I don't believe they are real? Good luck! I'm still waiting but in all I am doing ok. I hate benzos but I may finally fill this Ativan prescription I have just so I can get through the weekend without panic attacks.

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Hi, I was wondering if you could give us an update about the swelling of the optic nerve ,I suffer from the exact same symptoms you mentioned before. I was also told by dr that my optic nerve was swollen.  Did they ever tell you why that happened?

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15 hours ago, Js89 said:

Hi, I was wondering if you could give us an update about the swelling of the optic nerve ,I suffer from the exact same symptoms you mentioned before. I was also told by dr that my optic nerve was swollen.  Did they ever tell you why that happened?

Hi! So, it’s still the same person replying- just under a new name, again. Lol. 

But nothing really became of it. I was not diagnosed with a brain tumors or PTC. My neuro believed I was fine. Lumbar puncture came back clean (this was a year ago). 

All the eye symptoms I had stopped. Kind of makes me think this could somehow be linked to stress. I still apparently had the flow abnormalities that can cause the optic nerve swelling - but no one was really concerned about it. Which I try not to think of too much. 

My Neuro just told me to come back in if symptoms got worse. And they went away. Of course now I’m having new issues with other parts of my body- which I’m terrified is brain related. But none of the 15 doctors I saw at the hospital were concerned  

But, I, unfortunately, cannot really tell you what happened with the optic nerve issues, other than symptoms subsided. All the doctors I had, at the time, told me it could be caused by virtually anything. 🤷🏼‍♀️

 

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Hi

I’m so happy to have found this post and read about your outcome. I literally had this exact thing happen at a follow up appointment with my retinal specialist yesterday.

Last week I had an episode of vision changes and two appointments later got a diagnosis of central retinal vein occlusion in my right eye. Yesterday at the follow up the RS was concerned about possible retinal swelling in both eyes and said he doesn’t expect anything to come of it but wanted me to have an MRI completed. But then ordered it stat which of course sent me into the health anxiety spiral.

Hours and hours wasted on google later and all I can focus on is the possibility of a brain tumor causing intercranial pressure.

Ugh. The worst is even though the dr ordered the MRI stat, HE is out of town until Sunday. My follow up appointment is Tuesday so unlikely I’ll get results til then even though my MRI is tomorrow. I’m just trying to stick here to help from exasperating my symptoms.  

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I was told many years ago one of my optic nerves is bigger then the other. My physician told me that typically the first sign of a brain tumor are seizures. 

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12 minutes ago, MARC said:

I was told many years ago one of my optic nerves is bigger then the other. My physician told me that typically the first sign of a brain tumor are seizures. 

I have heard that as well! 

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Thanks! That’s definitely reassuring. I hate how my health anxiety twists the reality of my symptoms and what they mean. I’ve gotten pretty good about keeping it under control until something real goes awry healthwise and triggers the irrational anxiety spiral.

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21 minutes ago, EllyRay said:

Hi

I’m so happy to have found this post and read about your outcome. I literally had this exact thing happen at a follow up appointment with my retinal specialist yesterday.

Last week I had an episode of vision changes and two appointments later got a diagnosis of central retinal vein occlusion in my right eye. Yesterday at the follow up the RS was concerned about possible retinal swelling in both eyes and said he doesn’t expect anything to come of it but wanted me to have an MRI completed. But then ordered it stat which of course sent me into the health anxiety spiral.

Hours and hours wasted on google later and all I can focus on is the possibility of a brain tumor causing intercranial pressure.

Ugh. The worst is even though the dr ordered the MRI stat, HE is out of town until Sunday. My follow up appointment is Tuesday so unlikely I’ll get results til then even though my MRI is tomorrow. I’m just trying to stick here to help from exasperating my symptoms.  

I’m so sorry you’re going through this! It brings me back to how I felt when told I would need the MRI. So I understand the anxiety and panic it causes. My MRI was was done on a Saturday and of course waiting that one day caused so much stress. 

From everything I have been told by numerous doctors, nurses, surgeons, patients... whoever... if something shows up like, a brain tumor, they will let you know ASAP. 

The doctor who ordered my MRI called me back right away, but because he wasn’t technically in (he worked through a consulting group) he had his nurse call me with the results. 

I hope that makes sense . So hopefully your doctor has someone on call  for them. 

I believe your results will be fine! 

 

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Thank you so much for taking the time to respond. It helps me more than I can express to know that I’m not alone in my anxiety over everything health related. And the fact that your story so closely mirrors mine is especially comforting.

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I have had vision problems for the last month. My optometrist told me it was from overwearing contacts and dry eye. It hasn’t gotten better, though. I have been using drops and wearing glasses. Yesterday, I went to an opthomologist who told me I have an elevated optic nerve in that eye. She mentioned a tumor among other disorders as a cause. She also said I could have just been born this way. She wants me to see a specialist. Glad to have found this forum as I am terrified. I’m trying not to think the worst. Were any of you under really high stress when these things started happening? I have had an incredibly stressful year, and these symptoms seemed to start around the time I was under a lot of emotional stress. I’m wondering if it can cause eye issues.

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