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llcsmom

Brain Mri Anyone?

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Has anyone had an MRI of their brain to see if any of their symptoms might be an issue in the brain. I'm specificallly hoping to find a reason for my daughter's (POTS since she was 12, now 15) visual disturbance and why it is getting so severe.She can barely see enough to read or see her violin music at times. She has these visual disturbances all the time, they get worse and better. LAst 2 weeks have been awful! Now she is also having extreme brain fog, stumbling over her words, can't find the right words, trouble typing the right letters on computer, and trouble getting her fingers to play the violin notes correctly. Scary! But i'\m sure this is all part of dysautonomia, which will mean there is nothing they can do and nothing shows up abnormal on the MRI.

I'm just hoping something would show up in the occipital part of the brain, and it could be treated, and she would be all better!!!!! Well, us moms can dream can't we?? :rolleyes:

Hoping school can help out too. I get so sad when I think about how this affects her beautiful violin music! I know some people have had to give up their favorite activities becasue of this disorder.

Thanks for any input, experience, or advice you can contribute.

Dawn

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I am the mom of a 23 year old daughter who was diagnosed with POTS in November 2011 (symptoms started in July 2011 after a viral illness).

My daughter also has vision issues that come and go (so many that she has stopped driving). She had an MRI of her brain and everything was normal. Her vision issues are just another one of the many symptoms that she has with POTS.

She has not been able to tolerate meds so she is salt loading, drinking a lot of liquid and she just started an exercise program (through a cardiac rehab facility so that it is monitored). Hopefully the exercise will help alleviate some of the POTS symptoms, including the vision issues.

I hope your daughter gets some answers soon.

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I did have a brain mri (2 actually) to rule out things other than dysautonomia. The only thing it sowed were some white focal points that were described as "nomal with migrain syndrome". I do have visual disturbances, although not as severe as what you are describing. My POTS/migraine neuro (he actually specializes in both) says the disturbances come from both the migraines and the dysautonomia.

I did read another thread earlier today where someone mentioned the existance of neuro-opthamologists. Maybe finding this kind of specialist could help your daughter.

I hope you find some answers.

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I had a brain MRI and was diagnosed with Chiari I Malformation. That can cause some odd things, but they deemed mine too minor to be an issue. It is something that you could rule out, though.

Good Luck,

Angela

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I also had an MRI as I have chronic headaches, tremors, and visual disturbances. However, I do not have visual disturbances to the extent that your daughter is having and yes, I bet that is scary! I would get as many tests as you could done that would help pinpoint any potential problems but my MRI came out normal. With all the symptoms I experience I just have a hard time believing it! lol .. My heart goes out to you & your daughter. I hope you find a piece of mind soon! Big Hugs!

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4 of them, 2 with contrast 2 without.

I have several deep white matter lesions that are unexplained.

I have a mild Chiari 1 Malformation, deemed to minor to do anything about, except avoid spinal taps.

A couple venous anomalies.

I do see a Neuro-Opthamologist who has been unable to do anything. Everything on her end is NORMAL. Except for the worst case of severe dry eye that she has ever seen.

She feels this is due to something autoimmune and/or the dysautonomia because I can't feel that I have dry eyes, they don't bother me at all as far as dryness.

But she thinks the dryness is causing some of my vision problems.

I am unable to drive because my depth perception is gone. I have a constant haze over my vision, kind of like looking through a window that appears clear but you know there is a piece of saran wrap over it.

I get sparks, lines, ghosts, double images.

I can't read anymore for long periods at all because black on white distorts, same with the computer, I have my monitor turned on low and even that doesn't work well.

I am EXTREMELY light sensitive.

I've also seen a Neuro-Tologist (spelling wrong, brain fart..... fancy ENT Doctor) who did all the Vestibular testing on me, caloric testing, videostenography.

He said I have an central inner ear deformity caused by the dysautonomia or autoimmune or both most likely causing these problems and the Vestibular can cause the vision problems or vice versa.

He also diagnosed 2 different types of Nystagmus, but not a cause for them.

So the eye doctor can treat my dry eye, but nothing else because the problems aren't coming from my eyes, I see 20/20 and my Ocular nerves are great too.

All the vision stuff is a result of other things. I believe Vestibular, connective tissue, dysauto, neuropathy. As when I'm having my worst eye symptoms my mother says my Nystagmus is really bad, and it just continues to intensify.

So while I'm not happy with either of those Doctors and I don't see either on a regular basis, I do feel it was worth it to see them. I especially feel the Vestibular testing was necessary and may be of use in the future.

Hope some of this helps.

I do stumble over words and such when I'm very symptomatic.

Try looking at your Daughter's eyes when she is having a hard time and see if they look normal..... pupils right size, nystagmus (jumping around she doesn't notice), droopy eyelids.

You kind of have to do it on the sly though. Once my Mom tells me my eyes are bad and to look at her and focus I can get it to stop usually, which is turn helps the dizzies and calms things down.

Funny about that is during the Caloric testing, they do verbal tests and to get your dizzies to stop they have you focus on one point on the wall and it stops the test, the dizzies and your inability to find words, that's how they diagnose a vestibular problem, that's one part of it anyway.

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Guest Alex

I did have a brain MRI as well as a CT scan for some strange headaches. Everything looks normal, I was told. At least now I have proof that I have a brain. :rolleyes: .

Alex

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CharmedLinz - You and I sound like we have quite a few things in common. I have nystagmus too (just in bursts for a few seconds and only when I'm trying to do fine motor skills with my hands) and I have terrible depth perception issues now too. I often feel like I am wearing 3-D glasses all the time especially in the car. I don't drive when I am really symptomatic because this gets bad. Can you wear sunglasses while you are walking? I can wear them if sitting but if I'm walking they make my nociception with my feet almost non-existant. Its like I can not tell where I am putting my feet and it makes the ground apear to have hills and valleys that are not there. Very weird.

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I'm putting a link to a site about Irlen Syndrome: http://irlen.com/index.php Like your daughter, my daughter has had very weird visual distortions. I know she had weird auras (from migraines without pain) since at least age 4. She had terrible visual perceptual issues from a young age and we did visual therapy to try and help this and help with her conversion issues. The therapy helped some but her light sensitivity kept increasing and I ended up homeschooling her through the middle school years because of her numerous perceptual issues. She still was very advanced in school but struggled to keep up with visual and fine motor tasks. When we were homeschooling I got the chance to observe her closely and about the second year she started to describe in more detail the weird visual distortions. I googled what she was describing and also put in the key word red lenses. That brought me to the site about Irlen Syndrome. We looked at the site together and she pointed out the examples that were similar to how she perceived writing. I called her optometrist and asked him about Irlen Syndrome and he looked into it and felt I was on the right track in having her screened for this. Fortunately the one screener in our state lived nearby She was screened and we noticed immediately the change when she had her try looking through large lenses, sometimes several put together coming up with quite a color combination for her to look through. We ordered lenses to be put into frames we had and the colored lenses (not red but the spectrum she needed) worked beautifully for her. The distortions left, her eyes began to do conversion work without the therapy and she could go outside and be in light without the migraines. . While my daughter had symptoms of POTS since age 7 she was not diagnosed until age 16. My daughter had been through several changes of colored lenses and then she didn't need them for awhile. As her POTS worsened then the light sensitivity, migraines and visual distortions came back. For her medications for POTS also settled down the migraines and visual distortions. Looking back I think her issues with the pupils not constricting correctly and being sensitive to light contributed to the visual distortions. I do not know if Irlen lenses would work for others that don't have some of the classic symptoms but I do know of some people that have used them for chronic migraine activity and got relief. I just wanted to pass this information on with the hopes that it might be of

help to someone else experiencing light sensitivity and visual distortions. Oh, and her brain MRI was normal.

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I had an MRI and MRA. Both were normal. I personally believe anyone with POTS should have this to rule out Tumors, Anurisims, etc.

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I have to have them yearly - amongst all my other issues - I have a brain tumor that is growing. They don't think it is causing any problems - so it's a watch and see type thing. But, I went to one of the "best" eye docs at Mayo for issues with my eyes and pain in them and behind them (hurts to look up too). They couldn't determine anything wrong with them - other than I'm really nearsighted. They thought it could be due to silent migraines (and ones with pain too) that I have (not often - thank goodness). But, really not sure. I've been reading the Dr. Driscol theory and wonder if some of it isn't too much pressure in the head area from fluid surrounding the brain. It's an interesting idea and some are getting relief with the med to help that to drain better. It seems to go along with EDS too - which I also have.

Issie

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Had an MRI pre-POTS to figure out what was wrong with my eyes back then (weird condition called palinopsia - roughly, afterimages/tracers last about 3-5x as long as they should, sometimes appearing several feet long! exacerbated by serotonin reuptake medications, but otherwise benign although it made nighttime driving a bit more difficult). Nothing abnormal. It's often worth it to rule out "structural abnormalities" as my neuro and I agreed to call them, but I doubt they'd show anything with visual issues that are purely autonomic.

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Thank you to all of you for your replies. Just got the word today from the neurologist offiice, that, yes indeed, the brain mri is normal. As I am grateful that it is normal, there's always that, now what? question. So it is eith

er dysautonomia related or ....? Now my ? is, what I think 2 of you mentioned..... chiari..since alot of her symptoms fit that, of course, alot of the symptoms with chiari fit dysuatonomia too! I will be checking into that in the next few weeks.

I asked the nurse to ask the neurologist if the mri she had could show chiari,so I am waiting to hear back. Also contacted a chiari specilaist clinic to see how I can have my daughter seen there.

I'm so sorry for what you have all been through and are going through with this.

/

She also has had such bad eye pain and pressure that seems to shoot from the back of her neck to her eyes. Feels like she has boulders weighting down on her eyes.

YEs, she does have shaky side to side visual distortion too, besides the "visual snow" type of visio where it looks to her right before a person passes out....but she doesn't pass out/ This visiion disturbance alone gets her feeling like she is going to pass out and also extreme nausea.

. I don't think her eyes have physically moved quickly side to side though, like a nystagmus. Its just that her head and eyes are still but it looks to her like she is shaking her head side to side. Freaky.

OF course school seems to only want to deal with a vision problem IF you have something actually, physicallly wrong with your eyes. Not this crazy autonomic nervous system dysfunction that couses a person's vision to be messed up!

They can't help kids with that...Eye dr. says she has good vision.

By the way we have been to 2, count them, 2 neuropthamologists, one of them twice, so a total of 3 visits in the last 2 years....and nothing....everything is normal.

Regular opthamologist too of course. Nothing.

Dawn

Thank you for all of your helpful thoughts and listing your symptoms.

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my mri says " coronal FRFSE images show muliple signal abnormaliies (whats that mean?), periventricular in nature, predomineantly on the right side. there are atleast six lesions"

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I have had a brain MRI that showed up with nothing. I also have a lot of the symptoms your daughter has, although my visual disturbances don't seem as bad as hers are.

I have trouble loosing my train of thought and often have to close my eyes and really focus to come up with the correct words. I also make a lot of errors when I am typing. And things get blurry and I have trouble reading.

For me, I think all of these symptoms are due to cerebral hypoxia. None of these symptoms are bad for me if I am lying down and am well rested and I feel like I am getting enough oxygen to my brain.

But, if I push it and am upright for too long, my brain function diminishes and the above symptoms appear and I get a tell-tale headache. If I lie down and rest and maybe take a good nap, I am usually restored.

I wonder if your daughter is pushing things too hard?? Does she do better if she is able to lie down more? I cannot imagine trying to make it though the school day with POTS!

I really feel for you. It is very difficult to have POTS myself. It must be so hard to have your child have POTS and feel like there is not much you can do for her :(

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I've had 2 MRI's a year apart and showed same 2 lesions in occipital region that could indicate demyelination---but MS has been ruled out

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I have had three. 2 lesions nothing else and no new ones.

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I've had one which showed 3 large lesions and multiple smaller ones scattered around the front part of my brain suggestive of demyelination. Further investigation showed that I don't have MS. yay! :)

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Heard of a SPECT?

Yes, never had one. My doc one time was hoping to get a PET scan - but, insurance wouldn't go along with it and I would have to travel to get one. Lot's of techniques to examine the function of the brain and/or other organs.

Issie

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I have DVA in left temperal lobe and my eeg showed brain slowing in same area. Here is what I have found about DVAs. (I also have bad issues with light and movement as described by many in this post:

Most patients who harbor a DVA have no symptoms; the DVA is found incidentally during a neuroimaging investigation(13). DVAs are usually diagnosed in young adults who present with various symptoms that often are not related to the DVA per se (11). While symptomatic presentation is extremely infrequent, DVAs can cause headaches, seizures, trigeminal neuralgia, hemifacial spasm, and hydrocephalus.

Headache: The most common presenting symptom of a DVA.

Epilepsy: No patient had topographic concordance between the DVA location and the EEG focus. By contrast, topographic concordance was found between the DVAs with associated ICH and the EEG findings. When a positive association between a DVA and a seizure disorder is found, the possibility of a coexisting CM or hippocampal sclerosis should be investigated

Hemorrhage:High incidence of hemorrhage associated with this malformations are attributed the cavernous malformation.Pathogenesis of hemorrhage in venous malformation: In 1992, Wilson (21) described three potential causes oftransient, sustained pressure elevation within a venous malformationor its distal radicles. First, sustained elevatedvenous pressure may be caused by outflow restriction at thesite at which the trunk of venous malformation enters thecentral vein or the venous sinus as described by Dillon (3). Inaddition progressive venous overload and hypertension can also be caused by an acute increase in intracranial venous pressure that in turn is transmitted unimpeded through the radicles of venous malformation. Finally, partial thrombosiswithin the collector portion of a venous malformation may lead to local increase in venous pressure in the territory deprived of its normal venous drainage.

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I know the main topic was relating to visual disturbances your daughter is having. I have experienced the same issues causing migraines and a general crappy feeling from being so disoriented at times. From experience i have had MRI's with no results shown and saw a specialist a the large teaching hospital near me, had all kinds of visual tests done to find that my eyes were completely healthy. So before you have your daughter do some of that testing they may recommend consider first that any loss of blood flow to the brain even if shes on medications, even a 2% loss of blood flow due to orthostatic changes can lead to grumpiness, visual disturbances and other symptoms. :/ I know that's not what you wanted to hear. I have been there where i wish they would just find a tumor or something so i knew WHY... not saying you would ever want that but you know what I mean. Before her next violin lesson or practice have her drink a big glass or so of water and a salty snack. Hopefully it will help her brain get the fuel it needs to focus her eyes. Also I found the contrasting black and white in writing (and music notes) is harder for your eyes to focus on. Try printing it on another color... or white music notes on a colored background. It helps me a lot to highlight things on the computer to make them easier to focus on. If something is hard for her adapt to a way to make it easier and she'll be able to keep doing the things she loves. Let me know if you find anything else.

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