Lupus, CSF Leak, Chiari – Oh MY!

I humbly apologize for my long absence.  I’m quite certain I have a rock-solid excuse for not writing lately.  (1st hint, Chiari malformation.)   If you promise to excuse my absence and keep reading, I’ll share what has been going on with me. 

Between my bolt-in-the-skull surgery a few months back and my recent surgery, I haven’t felt up to the task of writing, as you can imagine. 

lupus fatigueMy desire to write was present, but my energy was playing hide and seek and it won.  My prior surgery for ICP monitoring was on April 12th.  I honestly wanted to post a blog article right after that one and certainly before my recent head surgery, which was scheduled for the end of June.  Unfortunately, I simply could not muster up the energy. Feeling wiped out from my first surgery, combined with my looming 2nd surgery…

I felt frozenlupus anxietyTruthfully, I was overwhelmed with fear.

Being a surgery veteran, for enduring a handful of medical procedures and surgeries, my newfound “deer in the headlights” trepidation about my approaching surgery surprised me.  Perhaps it was because the upcoming surgery was going to be vastly more invasive then prior ones, and it involved my head (skull and possibly my brain).  I was scheduled to have a Chiari decompression surgery – by choice.  Actually, my choices were rather simple and straight forward: 1. undergo the surgery, or 2. risk potential paralysis if my condition was left untreated.  I chose the former because I’m not much of a gambler.  Probably because I usually lose.  My chiari surgery was performed at the Johns Hopkins Bayview Medical Center.  My experiences at this hospital have all been positive, so I give them a thumbs up, in case you are hospital shopping.

Once my surgery was scheduled, all I could focus on was my calendar screaming at me like a blinking neon sign with the date otunnel visionf my surgery on June 28. I felt frozen with tunnel vision fixated on that date.  I could not stop thinking about June 28th.  June 28th.  June 28th!  I shouted at my calendar to shut it’s pie hole, but it refused to listen.  I tried to distract myself with every task I could think of that needed to be handled before my surgery:  grocery shopping, laundry, all medications refilled, bag packed for my hospital stay, pet sitter scheduled, etc.

With my lightning speed approaching surgery, I knew I had to handle the most unpleasant chore, which was to “get my affairs in order”.  You know, just in case.  Being faced with this task sickened me.  I felt dismayed simply because I’m in my early forties.  I never imagined I would ever have to complete such a task, out of fear of not surviving a complicated operation.  How did I get to this place in my life?  My body is in its forties, yet I feel decades older. 

Considering my situation from a more rationale perspective, I’ll admit everyone should have their affairs in order, especially if you have children.  I updated my “Advanced Directives” and my beneficiaries, all in the event that I did not survive the surgery.  (2nd hint, I survived.  But still, it’s undoubtedly wise and responsible to double check your affairs.)

Back to why I needed head surgery.  As luck, or misfortune, would have it, my brain is extra-large and my skull simply could not contain it anymore.  Personally, I always suspected my noodle was rather immense and now I have confirmation. lupus chiari

Alright, I wish.  My brain isn’t oversized.  Medically, I have a Chiari malformation, which means my brain sagged/dropped down through the base of my skull opening and into my neck area.  Ewwwwww.

With a Chiari, my most prevalent symptom is a constant headache.  The less significant symptoms include nausea, fatigue that increases throughout the day and practically immobilizes me when the sun goes down (no late night parties for me), neck stiffness and pain, difficulty getting comfy when sleeping on account of the neck pain, overall muscle weakness, head pain that increases with activity or exercise, cognitive dysfunction, and of course convincing doctors that we are not crazy (our favorite one of all).

The day-to-day headaches vary in the intensity of pain and location in my head throughout the day and night.  At least the headaches aren’t predictable and boring.  But, my headaches are unrelenting because no matter what I do, they are always present on some level and to varying degrees.

It’s not clear what caused my Chiari.  It’s possible that it was genetics.  Or perhaps the pressure was too high in the cerebrospinal fluid (CSF) which encases the brain and runs up and down the spinal column.  High CSF pressure could have caused a weak spot in my spinal column to basically have a “blow out”, thus causing a CSF leak.  In turn, the leaking fluid caused my brain to drop to the bottom of my skull because the fluid was too low for the brain to float happily like a beach ball in a swimming pool.  The release of CSF and loss of fluid pressure in turn caused my brain to plop down to the bottom of my skull somewhat like a large blob of jello falling to the kitchen floor.  Yuck is right.  Tragic is my perspective.

Another possibility is that I was not inflicted with high CSF pressure to begin with, but instead suffered a spontaneous CSF leak in my spinal column first, and that in turn caused the Chiari malformation (brain drop/sag).  The doctors cannot determine which came first, the Chiari or the CSF leak – chicken or the egg question.  What the doctors (and me) can agree on, is that the two afflictions, the CSF leak and Chiari malformation, have teamed up and wreaked havoc on my brain, spine, body, quality of life, etc. 

The goal of surgery was to restore normal fluid flow around the brain and up and down the spine, and of course relieve the fluid pressure.

brain chiari csf (Happy Brain)

I cannot possibly share in one article all that I have endured with my multiple CSF leaks that led up to the moment of requiring Chiari head surgery.  All of my CSF leaks occurred over a four year period and it involved numerous medical procedures, traveling to two other states, unimaginable pain, hope, hope-squashing, panic, depression, optimism and pessimism, disability, I could go on and on.  I want to share all of it with you in hopes it can help someone, anyone, but doing so in one article would essentially be a written mini, non-fictional book.  (Hopefully a best-seller.)  I promise to share the details of my tribulations later.  For now though, I am too darned tired, as you can imagine.

My post-surgery follow-up with the surgeon is in a few days.  Surprisingly, I’m looking forward to it.  I’m fairly certain the surgeon visited me in the hospital right after surgery, and he explained all that was done during the operation, but that quite possibly could have been a hallucination from the pain medicine.  I know he removed part of the bone in the back of my head, which was the first and minimal plan of attack.   Ewwwwwwwww again. 

After that factoid, I’m not certain if he did anything further.  I’m unnerved with anticipation wondering if the removal of a bit of my skull was enough to relieve the pressure on my brain.  Or was more done, such as placing mesh or titanium under my brain to lift it up and put it back into its proper place?  If one of these two items was used, will I set off metal detectors in the future, transforming me into Bionic Head Woman?  I hope the surgeon has carved out a considerable amount of quality time for our appointment, because I have an extensive list of questions.

I’ll share further details after I’ve recovered more and had numerous naps.  Please stay tuned……

P.S.  Of course we can all google “Chiari”, and I advise you to if you suffer from unrelenting headaches, but here is a good site to start with:  https://rarediseases.org/rare-diseases/chiari-malformations/

 

lupus butterfy

2 comments

  1. Linda says:

    Stacey, I am so sorry you had to go thru so much but I am happy you are sharing your experiences with everyone. I so hope you are on the road to better health. Will be praying for you for good results.

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