caroline holzberger

Keepin' it real about motherhood, Jesus, life, and everything in between.

WhatchutalkinboutWillis?

Ah yes, the 80’s. A time of neon colors, big hair, and cheesey TV shows.Silver Spoons. The Facts of Life. MASH. Perfect Strangers. Gimme A Break. The Cosby Show. Knight Rider. Doogie Howser. Mr. Belvedere. Wonder Years. MacGyver.

All such classics. All such innocence. Friend, they just don’t make them like they used to!

Now, aside from the epidemic of arrests, drug addictions, and destroyed lives that plagued 1980’s child-stars, their work as childhood actors was simply a lot of fun for those of us fortunate enough to grow up in that era. For those of you who weren’t, I give my condolences.

Along those lines was a favorite of mine, Different Strokes. In case you lived in a hole in the 1980’s, this was a show about a white, wealthy Manhattan businessman who, at the dying wish of his black housekeeper, agreed to adopt her two sons. Now, this was loooong before the trend we have seen in recent years of families adopting outside their race. Back then, this was just not done.

But, Mr. Drummond obviously believed there were “different strokes for different folks”. The two young black boys went from rags to riches, literally overnight. Willis and Arnold now enjoyed a life they could have never imagined.

Maybe the best part of the show was when older brother, Willis would tell his little brother, Arnold, something that seemed unbelievable. Arnold would squish his chubby little face up, scowl his eyes and say “What ‘chu talkin’ ‘bout, Willis?” as if in sheer disbelief.

He was chubby. He was cute. It was priceless. And, he made us all laugh by saying the thing outloud each of us so often thought. The tagline caught on like wildfire and is still used by cool kids around the country. J

Including me. Or should I say, at me.

I have, over the past few years had the opportunity to receive that “What ‘chu talkin’ ‘bout, Willis?” type of face over…and over…and over…when I say something like “I have multiple spinal fluid leaks.” or “I have had to lie flat for week or months at a time.” or “My adrenal glands have failed and I can’t even stand up long enough to wash dishes.”

“What ‘chu talkin’ ‘bout, Willis?” is written all over their faces. Even now, on my blog, I will have people say “Ok, so what is going on again?” “How did all this start?” Oh friend, how much time do you have?

So, I have decided to write up this brief ya right explanation of what in the world has been going on with me over the past four years. That way, in case someone asks, I can direct them to this post, instead of talking with so much medical mumbo-jumbo that they leave me with such a bad headache that they think it was contagious.

So, friend, here we go. (Go ahead and take a minute to find a comfy chair, get a drink, maybe a light snack…l’ll wait…….:)

Fall 2007 – I got viral meningitis from my middle son. The ER doc stuck me five times to try and get the spinal tap. He never got it. Then anesthesiologist came in and got the tap on the first try. (Fyi, I had had an epidural for each of the births of my two kids prior to this with no problems) After a few days in the hospital, I recovered from the meningitis, but suffered a postural headache. I received one epidural blood patch before leaving the hospital, but then had to return a few days later to receive a second blood patch. This one worked and I was back to “fairly” normal within a week. Really, the main side effect at this point was that every time I lied flat on my back, my arms and legs went totally numb. I had to carry an ice pack around with me everywhere, but other than that, it was fairly tolerable. Throughout the next few months, my neurologist at the time did a nerve study and even referred me to Scott & White, but no one could figure out why my arms and legs were going numb while flat on my back. They said that “this was just the way it was” for me now and I should try to function as normally as I could.

Summer 2008 – My neurologist released me to be able to have a baby, assuring me that no tests showed nerve damage or any other reason why I couldn’t carry a baby safely.

March 2009 – I had my third child, this time with no epidural (OWWWW!!) because the anesthesiologist at the hospital I delivered said she “wasn’t going to come near me with my spine history”. The labor was painful, obviously, and somewhat traumatic. I tore my cervix and bled severely. I had emergency surgery to fix it and thankfully didn’t need a transfusion. This trauma didn’t, however, cause a spinal fluid leak. I only tell you this because…

Fall 2009 – I felt AWFUL (extreme exhaustion, severe anxiety out of nowhere, headaches) for a few weeks and thought it was just my hormones adjusting to lowering my nursing schedule of my baby. Turns out my adrenal glands failed completely. They sent me to an endocrinologist who tested my cortisol level at zero. He immediately put me on hydrocortisone and kept raising the level of it until I felt like I could get up. I ended up on 80mg a day (normal dosage is 20mg) Then, shortly thereafter I didn’t feel exhausted anymore, but I kept experiencing headaches again, with no explanation. He assured me that with that amount of hydrocortisone in my body, I should feel no pain. So, I finally had to just check into the hospital and have tests run to check my brain. All MRIs came back normal, yet there was still no explanation as to why I was “all of a sudden” having positional headaches again. I was told that “people don’t leak spinal fluid spontaneously”. They said I had developed occipital neuralgia since the back of my head was so sensitive to the touch. They did two occipital nerve blocks, which didn’t do anything except hurt a lot! It took months to finally get a doctor to agree to do another blood patch. It took two patches, again. Then, within a week, I was relatively pain free. Now, I just had to slowly get off the crazy amounts of steroids I was on. This process took over a year, during which I suffered near adrenal crisis a few times due to ovarian cysts (which I had never had before) and bronchitis.

Summer 2010 – I was accepted as a patient at UT Southwestern and they were helpful by working as a team to help “get me better”

Fall 2010 – I felt the all too familiar symptoms of a spinal fluid leak and went to the hospital at UT Southwestern. I was there for 16 days as they ran tests and MRIs. They came back normal. They did another spinal tap to make sure I didn’t have another form of meningitis that can linger in your body. My pressure levels were within normal range but they did a blood patch anyway. It didn’t seal. So, they tried again. It didn’t work either. Then, they did a CT myleogram which came back negative (couldn’t find leak). They released me and told me to drink caffeine and stay flat. I did. Nothing helped. After a couple months flat on my own couch, my doctor agreed to do one more blood patch. This time, it worked! Within a few weeks I was able to sit upright. It took me a while to be back to somewhat normal, which the doctors said was simply because my body was so deconditioned and needed time to rebuild strength after being flat all day every day for three months.

January 2011 – Adrenal glands kicked back in and I was taken off ALL steroids! YEAH!

February 2011 – Began to resume pretty normal life. Drove a car for the first time in six months! Things started looking up!

March 2011 – Once again, suffered another spinal fluid leak. This time, my anesthesiologist acted fast and suggested a high volume patch. We tried it and it worked the first time! This was the first time I’d ever just needed one patch to seal it!

Summer 2011 – I was almost back to normal. I mean, for me, I was. I still had to wear an ice pack a lot, and I needed to rest quite a bit more than the average 32 year old. But, overall, I was the healthiest I’d been in years! Our family had a FUN and active summer! Something we were so thankful for and was long overdue for us!

August 2011 – Once again, I began to feel the positional headaches again. This time, I got another high volume blood patch like I had in March. It didn’t work, which my anesthesiologist attributed to the fact that he tried to stick me “higher” just to be safe. But, a week a later I had another high volume blood patch (this time in the exact place as in March). This one sealed and I have been recuperating ever since. The occipital neuralgia has been fairly painful the last couple weeks (these headaches are not positional at all!), but my doctor just put me on Naproxen and Gabapentin to help with that. (My first medication since January) Aside from feeling a bit loopy, it has helped quite a bit!

November 2011 – I made trip to the Mayo clinic (insert Hallelujah chorus) and spent three days being scanned, poked, and prodded. But, I was scanned, poked, and prodded by the best doctors in the country, so I was cool with that. They came up with a plan, based on the results they found, and I was sent home. I wasn’t feeling a whole lot better physically, but definitely I felt better emotionally to simply know I had a brilliant medical team behind me.

Late November 2011 – Not even three weeks after I got home, I began to feel the all too familiar symptoms of a spinal fluid leak (my sixth different leak in four years). I was in complete denial for a week or so, but then finally had to face the facts. I arranged with my team at Mayo to come back and have the procedure done we had talked about. They knew I had been given eleven blood patches over the last few years and had found relief from them. So, the next step was to perform a fibrin glue patch. This is a material that they inject in your back, just like the blood, but it is supposedly thicker and most successful at sealing leaks. So, they did the INCREDIBLY painful procedure of injecting both fibrin glue and blood into my back to hopefully seal this deal once and for all.

Now, I am home and waiting to see if this last gluey seal truly worked.

Until then, I will try not to look at my doctor’s reports and say “What ‘chu talkin’ ‘bout, Willis?”

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5 thoughts on “WhatchutalkinboutWillis?

  1. I need a nap after reading that!

    You are strong. You are courageous. You are faithful.

    “Courage is not the absence of fear. It is the will to move forward in spite of it.”

    Your Canaan is coming, my dear friend. Love you.

  2. I am in awe of the journey you have made thus far. You may not remember me, but I was a classmate of your brother from 1st grade to graduation–I knew you as Carrie back then! In reading, it's evident to me what a strong faith, not to mention endurance, you have shown throughout this trial. My sincere best wishes to you, and prayers that God's loving, healing hands be with you continually.

    In Him–
    Nicole Phillips Klingelhoefer

  3. Pingback: Deja Vu, All Over Again « caroline holzberger

  4. Caroline, I am a new spontaneous leaker. Did your glue patch hold for you? Sara

    • Yes! I was “glued” at The Mayo clinic in Minnesota two years, three months and fifteen days ago. Still good to go! That is after thirteen blood patches over three years prior. Those would hold ok for a while, but nothing like this. Do not lose hope, warrior. God can be trusted. I am here anytime! Praying for u as I go to sleep tonight! Blessings…

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