Chiari Malformation :: Optic Neuritis? Blurriness, Flashing Lights, And The Black Letters
Feb 2, 2015
I am not diagnosed as of yet. I do know that I have a chiari malformation 1. About 7-8 days ago I started noticing some visual changes in my left eye. I do notice intermittent pain/ pressure to my left eye and forehead. The best way I can describe the visual changes are as an ocular migraine- everything looks really bright, some blurriness, flashing lights, and the black letters on the bright white screen of my phone look a little dull- however these symptoms come and go over the day, they are not constant. I do notice that the symptoms come on with activity, bright lights/colors, heat. I did have a sinus infection 2 weeks ago and continue with the sinus pressure. I saw my eye doctor who completed a dilated eye exam and said all was normal. Has anyone else had these symptoms with optic neuritis? These symptoms are very concerning to me- didn't feel the eye doctor took me very serious.
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It was very rare for me to get migraines no other symptoms. But over past 3 years I have been getting them along with flashing lights, numbness in fingers, mouth and chin and my tongue goes tingly,, sometimes my arm can feel heavy but thing that scares me the most is I don't fell like myself its hard to explain. But recently getting more often, Nothing specific that I am doing that brings them on.
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I am 46 and have just started having these strange migraines, the first time I had one a couple of weeks ago , I thought I was having a stroke, saw flashing lights and zigzags and things were distorted like looking through broken glass but only one eye, that lasted about 15 mins then I felt sick and then I had a bad head which lasted a few hours , I went to the opticians who checked my eyes and said they were fine and then went to the GP who didn't even examine me just said these are ocular migraines, I have had two more this week, has anyone else had these or similar.
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I had my decompression surgery and a cranio-cervical fusion about 8 years ago. I started to have headaches, dizziness and numbness again. I had an MRI and it shows a significant decrease in the flow to the back of my lower brain. Has anyone had this happen? Does it involve another surgery?
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Over the years I have been having issues breathing as well as chest pains and a host of other symptoms. I was diagnosed with another condition however recently doctor's at discovered that I indeed have Chiari Malformation 1 and not what I was previously diagnosed with. The past two days my breathing have been terrible, I feel as though I am struggling to breathing, which makes me light headed. I also find that I have to take deep breath in-between speaking. I also have been having mental lapse as well. Is this normal with Chiari?
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Opinions please, from people diagnosed with a reduced CSF flow. And from those who have had surgery because of it. Or anyone who had advice.
I am 61 years old. My Chiari is only 1.5 mm. My last MRI said I have a mild reduction in CSF flow. No syrinx.
I am finding it increasingly more difficult to concentrate and wonder if the mild reduction in CSF flow could be the reason. Or, am I just getting old? I need to make a living, yet I have so much brain fatigue and overall not feeling well, that I am not succeeding.
I am not being productive and even though I need to care, I don't have the energy to. People, like my GP, try to convince me it can't be the Chiari (though I have not talked to him yet about the reduction in CSF flow). Maybe he will change his mind. But it is to the point that I doubt my judgement, wonder if it is mostly depression or just aging.
I am not begging my doctor for pain medication so he is concluding it can't be hydrocephalus. I understand that may be so, since that would have shown on the MRI too, but can the mild lack of CSF flow be causing problems anyway? If so, how?
I have learnt to put up with headaches and don't like meds stronger than Tylenol with codeine, which doesn't work. I do not want to end up dependent on more medications. Can't afford the ones I take!
Sometimes I have the headaches and neck pain for weeks. But even when that goes away I feel in a fog, and get double vision. It is both too hard to take in information and too hard to see. I only read on the computer or iPad now. Reading print is too frustrating to be a pleasure.
I hear words but my brain is usually too slow to process it. It's scary. I keep rewinding the TV and asking people to repeat themselves. This is life changing because I don't like to socialize anymore. It's embarrassing!
Throughout my life I have had periods where I feel in a fog and periods where my head feels relatively clear. I went through times of relatively good health, but never knew what kind of a day it will be. I failed grade nine because I couldn't concentrate but later got a university degree.
So I think I am intelligent, but am afraid that with a lifetime of blocked CSF flow there is brain damage. I don't have a bad gait, urinary problems or numbness consistent with hydrocephalus, thank goodness! But I just feel that my thoughts are too slow to function the way I need to, among other symptoms.
I haven't worked outside of the home for five years now, though I do need an income. Been trying to build a career in a field which I prefer not to mention, working from home. But it takes more energy and concentration than I have and I'm being left behind, as usual.
I would like to know if I am obsessing over this Chiari thing, blaming it for my problems when it might be depression and anxiety. Should I just forget about it and leave well enough alone? Or would surgery help me get my concentration and energy back?
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One week post op. Anterior cervical disc fusion - 3 levels. Painful lump on side of neck with incision and Doctor is not answering questions until 2 week office appointment. What is this ?
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I've recently been diagnosed with Chiari Malformation type 1 and after reading up on the condition I found that lots of people with the condition either already have or develop syringomyelia. Does anyone know how likely it is that this will develop? Also, does anyone know if the symptoms will continue to worsen over time or will they improve now I'm on medication?
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I am an adult with ADHD, 15 months ago I had decompression surgery as I had a syrinx almost the full length of my spine and Chiari malformation. The syrinx has reduced massively but is still large. I have had many symptoms following surgery but am wanting to know if any chiari patients also have experience with ADHD as alot of the cognitive issues I am having now are similar to ADHD like lack of concentration and taking in information. From what I can find there is no official info about this so I was hoping to hear from anyone who has a personal experience of this. I don't know if I can expect to return to normal as alot of the cognitive symptoms I already had but on a much smaller scale.
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I have always had problems with bowel movements with my chiari before surgery but this is intense. I am going five days with no urges to go at all ever since my surgery, so every five days I go. I am doing laxatives to go at every five days. It is getting painful. Is this normal? I know that constipation is normal with pain pills but usually there is an urge to go and you just can't. But the feeling to go has completely left. I'm worried. My stomach is swollen I look pregnant and is nearly as painful as my recovery from surgery. I am taking everything they told me- stool softener, miralax, benefiber, milk of mag, and suppositories. The pa said to avoid enemas if I could. Has anyone else had this problem?
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I have Chiari Malformation and was told I have EDS as well, I'm in the process of getting an official diagnosis. Besides headaches and other symptoms, one of my biggest problems is nausea! I had the stomach bug back in January and it seems that ever since I have been extremely nauseous 80% of the time. I've been tested for GI pathology and food sensitivities and nothing seems to correlate. Been thinking of possibilities with sugar or salt/electrolyte problems? It's worst at night, I wake up an hour or so after falling asleep and I'm extremely nauseous, I feel as if I move I will throw up and my body is shaking, like tremors.
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I have a child recently diagnosed with chiari malformation type 1. His age is 4. It started with vision and hearing issues, then breath holding spells when hit in the head. All started at age 2. He has strabismus with esotropia. Recently started having spells where he will drop to the ground and cover his eyes (photosensitivity) complains of spinning, they last 2-4 hours followed by 24 hours of vomiting. The neurologist believes this is unrelated to the chiari. I have scheduled a second opinion with a neurosurgeon. He also is constantly smelling everything. Any thoughts on that part? I was wondering if this is all related to chiari and if he has the decompression surgery will it fix his vision and hearing?
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Today I had a ECG stress test on a treadmill and after only two and a half minutes my BP went from 140/67 to 236/51. Has anyone heard of it being so high and with such a difference in systolic over diastolic? The diastolic actually dropped while still exercising. I am told to get an echocardiogram stress test now to determine if it is extreme hypertension rather than CAD. Has anyone else had this? Could it be chiari related. I am thinking my problems are heart related rather than chiari related now, but lucky me, it could be both I suppose.
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Was referred to a neurosurgeon to see a physiatrist which then referred me to 2 other drs - a neurotherapist and a neuropsychologist. also prescribed nortriptyline. i guess i shouldn't have said i was a little depressed. but man isn't feeling that way probably normal after a car accident, then chiari diagnosis, then possibly brain surgery, and finally after being told i may never again get to play the sport i love which is hockey because of all this? been to 3 neurosurgeons - 1st two say surgery is an option and come back when you're ready basically. 3rd one referred me to physiatrist and said basically surgery will be an option down the road. 26mm herniation with a CSF blockage (i had a cine study with 2nd neurosurgeon). jw if anybody else has been down this road. feels like im taking steps backward instead of forward...
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I'm 23 years old, I was diagnosed and had Decompression Surgery at 16. I have had nearly every symptom of Chiari that I have read about and this isn't new. Ever since I can remember I have seen and heard things that aren't really there. Although I always knew it wasn't real, most the time, it startles me. I have been treated with anti-psychotics and anti-depressants my whole life to no avail. Untill now I accepted the fact that it was just psychosis, but in the last year I have weaned myself off of all medication for depression, anxiety, and psychosis and behold! My depression and anxiety have diminished to nearly being non-existent. I AM HAPPY! But when I get a headache, the back of my neck/head swells and when it gets bad, I start hearing voices, screeching and loud knocking noises. It also feels as if there are people touching me, pulling at me, my skin crawls like there are ants inside of me. Also I see flashing lights, floaters, my vision gets blurry and distorted as if I am looking into those trick mirrors at carnivals.
I am scared of being labeled depressed and psychotic by doctors so I don't say anything. I have been dismissed by the only neurologist I have seen since my surgery, she even said I was 'cured' by the surgery. ARE these symptoms of Chiari or AM I crazy?
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I have worn glasses all my life and always been dependant on them. I was having trouble with my vision so decided to have my eyes checked out again, although i only had a sight test nine months ago. It resulted in me requiring stronger glasses and a large increase in both eyes, especially my left eye. I have a difference of 1.75 between my left and right eye.
I was referred onto the eye specialist again for further checks and i was told i have Optic Neuritis, and was told that my eyesight will probably get worse and been advised to return to the opticians in a few months to have them checked out again.
I was prescribed last year additional reading lenses i wear multifocal contact lenses most of the time but wear my glasses at night. I was advised by the opticians that my prescription is pretty strong especially needing additional reading help.
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I had my first bout of Optic Neuritis five years ago in my right eye and from memory I had no vision loss at the time only pain, my MRI was clear and the ON went away without any medication in about six weeks.
I had my second bout of Optic Neuritis that started in August 2012 (that's never gone away) it began very different with severe pain in both eyes then went to my right eye only for around a week then to my left eye (my right eye returned to normal) I completely lost the vision in my left eye and the opthamologist put me on oral steroids and referred me to a Neurologist due to a number of strange symptoms I was experiencing, she was no help as she said I was depressed and wanted to start me on antidepressants she really didn't want to listen so I didn't go back. I had a further two brain MRIs that were also clear and I regained cloudy vision that has only improved slightly now 12 months later I have days that are cloudier than others and have accepted that it will never get better,my opthamologist said I don't need to go back to him unless I feel I need to. My main question is I have recently been to three different optometrists (all from the same place) for new glasses and each time my new glasses came back I couldn't read through them, I don't know if they are getting my prescription wrong or if its my eyes, I contacted my ophthalmologist for advice and he said to try a different optom but Im embarrassed and scared that its just my eyes or Im going crazy, has anyone else had this problem?
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Over the past few days I have been experiencing pain behind the eye which had optic neuritis previously. Tonight as I was reading to my son in a dark room, with a lamp to my left, I noticed that vision from my right eye was normal, while from the left, it was significantly darkened. Maybe this is a question of physics, and how light falls and is perceived. I have also been dealing with headaches over the past week or so. I am at a loss now to know whether the eye pain is to do with the headaches, which may be brought on by the amantadine I started (how long for side effects to show? this would be the first headache side effect after about 3.5 weeks), or if this is optic neuritis again. Anyone here any good with physics and physics of light especially?
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Referred to ophthalmologist by my neuro to investigate left eye grey vision spots, and weakness. Optho diagnosed optic neuritis (pale optic nerve, extreme light sensitivity, abnormal pupil dilation etc. etc...) and neuro prescribed IVSM 3 days at home. I was found to be allergic to the IVSM, however my post is referring to the worsening of my neuritis.
Since the treatment my eye is now constantly in pain fluctuating from minor to pretty debilitating. I am in sunglasses all day long except with indoors with no windows.... Or lights... Due to light sensitivity. The strangest addition to the neuritis symptoms, however is that as the day progresses (and my eye is used) the whole left side of my head goes numb. Since the MS work up beginning in Feb, I have only have left side facial numbness once for 5 hours. Now, it's daily. It certainly worsens as my eye gets tired... And there are bouts of shooting pain through the whole left side of my head that are very light and sound sensitive.
Is this normal for neuritis? To cause facial and head numbness as well? Or, could this possibly be some weird side effect from the IVSM as it's trying to "calm" my inflammation.
Also, every single day at about noon, for a week, I get this severe anxiety chest compression that makes breathing labored and short. I am aware of the side effects from the IV causing anxiety, as well as MS in general, but this is a trigger less symptoms that's more significant than any anxiety I have felt before? I'm curious if this could be, instead, the MS hug? However, there is no pain with it, just a complete chest compression that lasts about 3 hours.
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I am a female Caucasian that is 23 years old, 5' 7" and about 155 pounds. I was diagnosed with optic neuritis in early March. I had eye pain upon movement, blurry vision, slight loss of color (Which still remains), and some odd headaches (almost felt like a severe hot flash inside my head). The doctor did not feel it was necessary for me to take the steroid treatment. My vision is recovering, but I don't really expect it to be 100%. I had an MRI of the head and neck and it came out clean with no lesions. My blood tests came back clean as well. I consider myself to be relatively healthy aside from some urinary tract infections and my neurologist said that he doesn't think I will develop MS, but what I have read makes me think differently and I want to be informed. I know that there is no way to pinpoint exactly what my risk of MS is, but I was curious if any other cases like mine have not developed MS?
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I finally saw the MS specialist today, after months of waiting. His opinion was that my symptoms point to MS, but I will be having a plethora of labs drawn and an MRI. The most frightening thing to me was that he is getting me in to an opthamologist asap because it appears that I have optic neuritis in both eyes. I'm not afraid of MS, but I am afraid of going blind. Someone tell me something to make me feel better, please.
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