So I have been both blessed and cursed with a VP shunt. Since 2021, I have had a codman certias shunt that drains excess spinal fluid from my brain to my abdomen area. It is adjustable by a specialized magnet and can be great or act up at times. There is a constant risk of severe infections and simply malfunctions. It is hard to evaluate either of these complications, as usually, a lumbar puncture is required. If you’ve ever had a LP, or spinal tap, you know that it’s definitely not the easiest and can be quite painful and definitely stressful. I am not sure how many I have done, but it is at least 35!
In my world, I have an extra complication of needing to be on blood thinners, currently warfarin and Plavix. Doctors tend to panic and require you to be off of these for a good 5 days before they will attempt. This creates a hostage situation requiring patience and support when your hospital stay is extended this long.
Then comes that actual procedure, this time it will be done by Interventional Radiology or IR. I have found this unique group of doctors to be highly undervalued and they do not get the credit these deserve. IR doctors often are able to fix things or get information that other’s can’t and in a matter that is neither a panic nor a dragged out ordeal. Their staff members tend to be pretty knowledgeable as well. I’ll spare you the nitty gritty parts of the process, but sometimes its easy and not too painful, and other times I have been left in so much pain, I required another procedure to place a “blood patch.” I’ve been told my anatomy doesn’t make it easy for anyone to be super successful.
I’m currently dealing with symptoms, of high pressure. This means an intense headache that comes out of nowhere and gets worse when coughing or bending over. Rest helps, but mornings tend to be bad. I also have eye pain and vision issues. Then there is the super brain fog issues- not being able to remember things, especially names of common items like medications or procedures. It’s more of problem for me right now than usual. The lumbar puncture will determine if my pressure is high (and how high) which will help determine if the shunt needs to be adjusted. The very act of draining fluid also allows for some relief.
The eye pain/difficulties and headache are also indicators of something called papilledema, which is the swelling of the optic disc, the area where the optic nerve enters the eye. Without treatment , this will lead to permanent vision loss. I have had three different battles with papilledema in one or both eyes. Luckily, most of the damage was reversible. Treatment usually requires high power diuretics, I usually end up on Diamox, which has a lot of side effects. I need to see an ophthalmologist to diagnose the papilldema and judge its severity. Ophthalmologists are hard if not impossible to find in a hospital and bed exams aren’t always the most helpful.
So for now, I wait, for the lumbar puncture, as well as for help from ophthalmology. I wish there was a spell to lower my INR so that the wait time could be reduced and I could get back to my “regular life”
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