I’d love some feedback/thoughts on the following:
Last 6 months or so I have been having visual symptoms: blurry vision, double vision, and this odd focusing issue (it seems almost like my vision is zooming in and out trying to focus like a camera). It started when I went off of my migraine medication Inderal due to my blood pressure being too low and started taking Topamax instead. I had a recent MRI and MRA, both fine, and some blood work, also ok. My neuro is suggesting a spinal tap to check intracranial pressure. I am just super hesitant because the last time I had one (granted was almost 15 years ago) I had the worst spinal headache of my life and missed almost a week of work. I’m just curious for those that have increased intracranial pressure what type of symptoms you experience and what you might suggest. I am decompressed - almost 19 years post surgery! AT the time of surgery I did not have any increased pressure. My headaches have also increased recently, along with ringing in the ears, dizziness/vertigo, and pain behind my eyes, but none of these symptoms are new to me. Thanks for any advice anyone can provide!!
I completely understand your hesitancy in getting another spinal tap. Since you had that experience last time, you need to discuss this with your doctor. They have some things they can do, including keeping you on your back for a while after to keep the pressure down on that area, blood patch, etc. If you can’t tell, I’ve gotten the spinal headache from a spinal tap. I wish you luck!
Sharon from ModSupport
Thanks, I did discuss with my Doctor and she suggested having it done my interventional radiology and suggested some of those things to try to make me feel more at ease so at least she understood that. I am still nervous though. I guess I know I likely need to have it done but am just hesitant. I appreciate the response.
Having a spinal tap, as you have found out, is not without its side-effects. I would be more inclined to have one if my doctor really thought that I had intracranial pressure not because he did not know what else to test for. To test just for a tests sake is not a good idea! Perhaps discussing what the symptoms are for increased pressure would help you decide. Also “visual disturbances” as a side-effect is a bit vague, more precision is encouraged. Can an opthamologist look at your eyes and tell? I do not know.
What I do know about Chiari and visual disturbances is that Chiari’s pressure on the spinal cord and its contents can affect brain function - before and continuing after surgery too. Various systems can compensate, but if further challenged later in life (illness, blow to the head, medications, ageing, stress), the brain’s ability to perform well can be compromised. Vision is incredibly complicated and one of the first brain function to deteriorate with Chiari both pre and post surgery.
By all means explore other options with your doctor to rule out other conditions. We cannot blame everything on Chiari.
If nothing else is to blame, and doctors are finished investigating, you may want to consider visual therapy. I am 6 years post surgery and ended up doing a couple of long stints of daily exercises to get my visual perception in good shape. Of course doctors blamed vestibular migraines, psychological disturbances, and stress as a cause of my vision concerns prior to me finding a wonderful vision therapist.
Keep us posted!
In the vision category I am wondering if anyone has severe issues with driving at night. My daughter had surgery in Dec 18 and she is now learning to drive and cries when traffic is heavier and says she cant take it because the lights hurt her eyes and she says the white on the side of the road affects as well. She also says she has pressure behind her eyes. Any info would be appteciated.
A visual and perceptual / neuro-visual processing (goes by many names!)assessment may not be amiss to see if your daughter has any deficits in processing visual information. Needs to be someone qualified and not just putting up a shingle! Will probably be a specialized optometrist who then would suggest vision therapy to address found problem areas.
Something else to consider (and worry about as a parent!) is a neuro-psychological assessment. Chiari folk can be affected with the brain not processing information as efficiently as it should. Returning to driving, let alone learning to drive, can provide too much stimuli for the brain to handle. Crying with stress is an indicator for me. What are some other situations where your daughter has difficulties?
I had a neuro-psych evaluation done which outlined a few areas of significant concern. Knowing what was difficult and why helped me to understand why I was over-reacting in some situations and how to strategize around it.
Assessment! Assessment! To find out what is going on. Good luck with your search for your daughter.
Going through this EXACT same thing… with addition of depth perception issues back after 5 years decompressed (November 2014). I don’t see my feet, walk into objects (door frames mostly) and run over people standing on my left side. I had a base-line visual fields test in 2015 or 2016, in case this issue became worse.
Saw a Neuro Opthamologist a few weeks ago who COMPLETELY disregarded the brain (or Chiari) involvement, did a comprehensive testing & referred me back to a NEW(his word) ophthalmic Dr of my choice to re-evaluate my glasses. Did that yesterday…new glasses… and she said eyes fine…brain, ehh, not so good. Tired of see-sawing between specialists and VERY expensive glasses. Anyone have a handle on this? I have shadowing, double vision, worse in the afternoon, when tired or stressed. Nearly non-existent night vision (glare from headlights, streetlights and diminishes in rain or snow).
Got a handle on it. I saw plenty of specialists (neuro-opthamologist, opthamologist, specialized optometrists, and many regular optometrists) about my eyes. All scoffed at me with varying degrees of politeness, all said that my eyes were fine. I too bought a very expensive set of glasses for my fighter-jet pilot eyes to help with double vision and reading. They are dusty and waiting for when I need reading glasses: I will need to put in new lens.
After surgery, I eventually found a skilled vision therapist who worked with me for a year to improve my eyes. NOT ALL VISION THERAPISTS ARE CREATED EQUALLY. We were done with each other at that time, I took a year off than did another year of eye work. It was work, I did it most every day and I slowly, in fits and bursts saw improvements. Very happy with my eyes today. Since surgery did not help my eyes, I needed something else. I found that doctors did not have the answers as they do not deal with the lengthy treatment of therapy.
Of course, I had vision problems for a number of years so hopefully vision therapy would not take as long with a shorter stint of symptoms!
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Interesting about the myasthenia gravis. How were you tested for that and what does the full treatment look like?
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Thanks for that information. It is a shame that all the symptoms can be for Chiari too! Hard to differentiate between rare conditions. Hopefully the treatments that are available to you will sort out those brain processing symptoms.
Power on through the testing journey!
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Very interesting information. One question, did the neuro-opth dx you? My daughter was referred to see one but there are only 2 in the state and neither will see any patients under age 12. I second @gabby_jazzypants, it’s so frustrating that so many of the symptoms are similar. More research and education is definitely needed! Wishing you all the best in your quest for answers and thank you for sharing your experiences.
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@myangelface it was my Neuro Opthamologist who diagnosed me. We have just a few here in GA & the 1 at Emory wouldn’t see me because I hadn’t been there in the past 2 years. One of my Optometrists referred me to the one I’m seeing. Hope you can find 1 to see your daughter!
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I went through the same progression but have had decompression surgery and tethered cord release. Severe double vision progressed from Jan 2019 and was seen by Neuro ophalmologist…also saw nothing in eyes. Came in saying “not your brain,” without even introducing himself fully. Was completely set against Chiari dx despite history of past 4.5 years. Even quoted the rudest doctor I had ever seen, in his report, the one my doctor wrote a scathing review to his boss.
That neuro-op sent me to another ophthalmologist, locally, who ordered prisms…both vertical & horizontal…and her optician had never seen a prescription like it…for any age. We are unique. Only had them for 6 weeks and they weren’t fitted. Right eye is still “off,” but depth perception is improved.
I was tested for ocular myasthenia gravis…it all came back negative…chiari causes choking (returning symptom- lost 60 lbs last time-was afraid to eat towards end).
I had the rudess neuro-opthalmologist too! Unbelievable. He wrote in his report, as well, that Chiari was not the cause but had no further opinions.
Just to speak on prism glasses is that my understanding is that they are a prop for the eye and basically force the eye into a better position but that the underlying causes are not addressed - ie Chiari Malformation affecting the visual processing centers of the brain. As time goes on different lens again are needed as the brain adjusts to the presence of the prisms. And are they expensive!
If you are ever interested you are welcome to give me a shout out about vision therapy. It was truly a Godsend in fixing up my brain’s ability to process visual information. I was able to fix up the horizontal, and vertical component of vision that the prisms address, as well as depth perception and a host of other problems that I had that I know longer know the names of. The eyes are great now when surgery alone did not fix it. My brain needed in help in relearning how to sort out what the yes were seeing.
I say it again - vision therapy addresses the brain’s ability to process visual information. The brain can relearn
Thank you for the reminder…I have no clue when I posted that. Frustrations, I guess. I did have a baseline visual testing done in 2016 & requested the same testing at a vision therapy Dr., here in Marquette, MI. Currently, we are not allowed to pursue it, due to Covid crap. The testing will be done, soon, I hope & the therapy will have to be approved by my insurance 1st.
I do not think that we are allowed to speak ill of specific doctors. Might want to change that post! Any thoughts on the concept of vision therapy?
I thought I’d follow up as it’s been a while since I initially posted this. I ended up getting tested for MS as well and it was negative. I did get a referral to a second neuro opthalmologist who was wonderful. He took a lot of time with me and didn’t dismiss my symptoms or the Chiari. He did say that the prisms are helpful but that sometimes they are used when there are actually more serious underlying issues. He did diagnose me with something that has to do with convergence of the eyes but I can’t remember the exact term and also can’t find it in the records! The hard thing is that of course there is any magic treatment for it. He suggested working on getting migraines under control which I do notice a difference with visual symptoms and my migraines since I tend to have a lot of ocular ones. He also suggested a few other things but again no magic. I think the one thing that made me feel better was that he said it wasn’t a serious underlying issue. He also did an extra CTA and I had a spinal tap. So that is just me. I would push until you find a good Doc you feel comfortable with. The first one I saw was awful, she made me cry! This one was amazing. The difference is crazy and it literally makes the world of difference for us!
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No worries! Doctors can be quite exasperating. I do hope that your testing gets done soon. In regards to insurance, I know that here in Canada, visual therapy is typically not covered. It can help to stress the point with insurance companies that visual therapy has to be referred by an optometrist or what ever medical person is doing your testingand is under their care.
I found that because of the long standing impact of the Chiari, my progress was slower than expected and that one visit a month with enough progressions of exercises (or none!) was enough to keep me moving slowly forward. There is a movement in the visual therapy world where they expect you to come much more frequently and work with a therapist. I personally found that two sessions a day every day with just me was much more impactful for my progress. Our brains need time to change!