Fiercely Independent Pam

Tag: IIH

  • 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!”

  • 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”

  • I hate being sick…

    I found this quote (pasted below) and realized it said so much of what I feel on a regular basis. Those, thankfully rare moments that I really consider where I am in life. Having chronic illnesses means always finding a balance between obsessing about getting better and pretending your life is normal or in other words, embracing the reality versus ignoring the facts. Most of the time this is for self preservation; nobody, including myself wants to hear about the struggles all the time. I often tell people that my full-time job is taking care of my health and that isn’t really a joke.

    When you couple chronic illness with invisible illness, and add in rare diseases into the mix, you are faced with a ongoing problem of being believed, but almost anyone, after all no one should or could have all of this. My list is crazy(simpliefied): Primary Immune Deficiency, Asthma/COPD, IIH, RA, POTS, Adrenal Insufficiency, Type 2 Diabetes, Hashimoto’s Disease, Migraines, anemia, SVT, pituitary tumor, kidney stones, urinary issues, back/neck/hip arthritis, endometriosis/ovarian cysts(now a non-issue due to recent hysterectomy), severe allergies, history of PE and DVT and depression/anxiety. I am always aware and thankful for the other scary stuff that I have been diagnosed with and then proven otherwise like MS and Myasthenia gravis. I am well over 50+ surgeries and have been plagued with orthopedic issues from a bad car accident and stupid bad luck, along with years of playing sports. My medication list is ridiculous and it gets slapped with “Poly-pharmacy” all the time, something that the good providers see as a potential problem but not sure how to handle it. I swallow pills and give myself injections like its my job!

    I write this today, not for pity or attention, but mostly for my own good and hopefully someone else will feel less alone in their own medical journey. I do not expect my family, friends, or my “tribe” to fully comprehend all of this, as I barely do. I do hope that those who surround me with love give me grace to be imperfect sometimes. In turn, I vow to keep fighting and giving myself this same grace. I will continue to “Not let the hard days win” as I have won !00% of my battles against bad days! I will continue to search for new treatments and support, my biggest adventure in this area is attempting to get a service dog for mobility, assistance, medical alert, and of course companionship; all of this would be a total game- changer.