Chiari Online Support Group

Visual Symptoms and Increased Pressure

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!