Fiercely Independent Pam

Tag: IIH

  • 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.

  • Happy Shunt-anniversary (4 years and counting)

    I really wanted to write something about my shunt-anniversary. That is the day that I “celebrate” for having my vp-shunt placed. A vp shunt drains the extra spinal fluid that builds up in my unique brain and dumps it into my stomach area via a catheter that runs the length of my abdomen. This is due to a condition I have called IIH or Idiopathic Intracranial Hypertension (IIH), also known as pseudotumor cerebri, is a condition where the pressure inside your skull increases for no apparent reason. This elevated pressure can cause various symptoms, most notably headaches and vision problems. It primarily affects women of childbearing age, particularly those who are overweight. I was the perfect candidate for this unique disease. I had a series of bad headaches (totally unable to be controlled, needing ER visits or admissions), eye issues like pain and double vision as well as loss of vision, and neck/back pain.

    After a ridiculous amount of ER visits, being labeled as a wimp or not being able to handle a simple headache, or a drug seeker, I was finally referred to a neurologist. The neurologist looked at my unique medical records and went on a hunch that something else was going on. Multiple tests then happened included an always fun and painful lumbar puncture. Measurements were taken of the pressure at the opening and closing of the puncture, which has to be done without anesthesia of any kind- YIKES! Mine was very elevated indicating a potential problem. Around the same time, I started seeing a wonderful eye doctor. He diagnosed me with papilledema (swelling of the optic nerve) that could cause me to lose my vision permanently if no action was taken. The combination of these two events got me a referral to a neurosurgeon.

    On my first appointment with the neurosurgeon, I was told three things, I had a weird tumor (nothing too scary), that officially was diagnosed with IIH, and I needed brain surgery (again) to place a shunt. Oh, and the surgery would be within the week. I, for the first time in a while, was rather stunned and didn’t ask my usual crazy number of questions. One thing that stood out to me was the fact that that I would lose my hair on the side where the shunt would be placed. I latched onto this thought and had to control it. So, I did what every rational person would do- I had my head shaved in advance of the surgery.

    I made a quick decision to shave my head- literally within twenty minutes of leaving the neurosurgeon’s office, as I had a pre-scheduled hair appointment. I walked in to my wonderful hairdresser and asked her to shave my head. She asked me several times if I really wanted to do it. I was determined to control whatever I could at this point and she not only shaved it for me, but wouldn’t charge me for the “cut” either. I remember driving home, bald as my father, and wondering what they were going to say. Both were in complete shock about the hair and major surgery that was going to happen so soon. I snapped a picture and sent it out to the universe announcing what I had done.

    The surgery was pretty complex and I spent several days in the ICU. I had a big incision with staples on my head as well as my abdomen. I am blessed with not remembering pain long term, but remember that my wonderful doctors including my neurosurgeon and pulmonologist rounded daily, if not twice day. After being finally placed in a regular room, I went home at day eight. I was so glad that I shaved my head because it was nasty after the surgery and caked with blood, staples, and anything else that came with the surgery including not being able to shower for another two week and only using baby shampoo after that for a while. My crazy curly hair would have never managed that sentence, plus it was summer in south-west Florida!

    My hair grew back very slowly, but healthier than ever. There were a few sunburn moments, but I quickly learned to find some awesome hats (with the help of some friends). I look back now on the decision to shave my head and realize it was one of the best, most freeing decision I have ever made.

    Having a shunt came with something I wasn’t prepared for at all, mainly the very real fear of the shunt getting infected or damaged and being so close to the brain. Every stupid infection without a simple source raises a red flag, as does each non-typical headache, or injury to the head. I can’t even count the number of shuntograms, ct studies, MRI’s, or x-rays that have been taken. I am often surprised that I am not green from radiation. Nonetheless, I would have the shunt placed again given the choice. My shunt, while temperamental and fragile has saved my vision, and freed me from the worst headaches of my life. I have to be careful around magnets, which is oh so much fun when a doctor orders an MRI and caused me to have to change things like my mask for my sleep machine (NIV) because it had magnets.

    I have some scary moments with the shunt so far. A few concussions, viral meningitis, changes in the programable valve, ER visits, trips to MUSC and more. When I moved back to Myrtle Beach, I was nervous about losing my beloved neurosurgeon, but I found someone at MUSC, an amazing woman, about my age that takes no prisoners. I like that approach! Somedays I forget that I could’ve lost my vision or that I have a foreign and expensive device in my brain, other days its one of my first thoughts, either way, its a part of me and my life story.

    I wish I smiled, but this was a few days after the shave…