Fiercely Independent Pam

Tag: VP Shunt

  • Hurry Up and Wait…

    My dad would say this all the time, especially when dealing with the medical field. Being in the hospital is a waiting game; you have very little control over when something is going to happen. Nevertheless, you always seemed rushed.

    I’ve been in the hospital, this time for a week now. When I came in, they wanted to do a lumbar puncture to determine what could be going on in my head/shunt. The doctors attempted several times bedside in the emergency department, but had no luck. Lumbar punctures are never fun and always pretty painful. The decision was made to repeat the attempt with the help of interventional radiology (IR). The problem with this is that IR would not do the lumbar puncture until my blood thinners were held for at least five days. So, I waited.

    Five days later landed me right smack during the weekend, where there is a skeleton crew for IR. So, it being Monday, I believed that I would be scheduled today. Around four o’clock, I figured it wasn’t going to happen and I was bumped to tomorrow. My nurse confirmed this and a whole lot of “Hurry up and wait” took place.

    We will try again tomorrow and with any luck it will be a success and I will be able to go home afterwards. Having a shunt and having IIH means that lumbar punctures are always on the table. I came in with a severe headache and blurry/double vision. These are troubling signs of possible papilledema or swelling of the optic nerve in one or both eyes. This can lead to permanent vision loss if not corrected and treated.

    I’ve had several rounds of dealing with papilledema and each time my previous eye doctor would remind me of the seriousness of the issue. Unfortunately, an eye exam is a tricky thing in the hospital. It usually needs to be done as an outpatient because of the necessary equipment and most hospitals don’t have ophthalmologists available beyond phone consults.

    I will be sure to follow up with a local ophthalmologist and if necessary, my neuro- opthalmologist at MUSC. More opportunities to “hurry up and wait!”

  • My life as a Plant…

    My biggest hurdle in dealing with my medical issues, is not the pain, constant appointments, or missing answers, but rather the unbelief of others. Whether it is doctors, nurses, friends, family members, or even strangers, it’s so hard to deal with people who believe that there is no way I could have so much wrong with me. It eats me to my core. I know I have to deal with these feelings and I need to let people have their own feelings, but it’s not easy.

    I can handle the medical procedures, medications, and pain. I boost myself up and put on a smile along with my crazy curls and deal with what has been handed to me. I believe that it is not to hurt me, but rather teach me and help me be stronger for myself and others. I shut down and wilt when others don’t believe or think they can solve all my issues.

    Lately, my wilting and shut downs do not portray my best-self. I get upset, cry, and become very anxious. This cycle just keeps me in a place that I do not enjoy, nor does anyone around me. I will continue to work on this but it’s so important and easy to be believed. To the medical world, do your homework, my issues, while mostly invisible, are still very much real. Things like shunts, surgeries, and medications do not happen without having proven needs that are not arbitrary, but reality for myself and thousands of others. To my friends and family, it sucks that I am not reliable anymore and that I need help. Please always tell me if I am asking too much or you are not able to help. I promise it will not change our relationship. Ghosting me or not explaining the distance, hurts and will impact our relationship, which I hope neither of us wants. To strangers that feel they need to comment, I will simply let you believe what you want, your comments sting, but frankly, I don’t have the energy to fight for a non-existent relationship.

    All of this might seem a little cold or not like me, but it’s self-preservation at this point. I’ve chosen to subscribe to the “Let Them Theory”, in which I recognize that I cannot force or make anyone do anything, only people can change if they want to. It has been a freeing practice, and has helped me not to stress about relationships.

    For now, I will recognize that my body does not look like a temple, but that doesn’t mean I don’t want to treat it that way. I really am the lost plant on clearance begging for a little water, sun, and love. I will push through the ugly soil, but just need to believed that it is possible. My scars and experiences tell a story that I am proud of.

  • Shunt troubles or just fear?

    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”