Living with Chiari, Recovering from Chiari Surgery

I should be asleep right now. I tend to get all of my writing ideas at night, as well as all of my creative and business ideas for that matter. I’ve slept so much these past few weeks that there are occasional hours I feel wide awake, like right now after 2:00 AM.

Three weeks ago today I underwent the most serious medical procedure I’ve ever endured: decompressive suboccipital craniectomy and cervical laminectomy, also known as Chiari Decompression. This included a duraplasty, which required harvesting tissue from deep within my thigh to open and expand the dura, the protective tissue the contains both the brain and spinal cord.

My daughter and I are two of the small population born with this congenital disorder, in which the cerebellar tonsils, located at the base of the cerebellum next to the spinal cord, protrude through the opening in the skull forming a hernia in the upper spinal column. Though not life-threatening, it creates a variety of symptoms, including:

  • localized headaches in the back of the head leading to the eyes,
  • severe stabbing headaches brought on by laughter, coughing, or sneezing;
  • lack of coordination and fine motor skills;
  • dizziness and vertigo;
  • inability to speak fluently without pauses and interruptions as words won’t form correctly or at all;
  • chronic neck and shoulder pain;
  • occasional tingling or numbness throughout the arms and hands;
  • and a general sense of malaise.

My daughter went through a Chiari Decompression in July 2013, and is looking at a second surgery in the near future as her Chiari Malformation is off-the-charts in both size and severity. She has a 28mm obstruction, whereas mine is 16mm, which is considered moderate to severe depending on the source; my doctor went with severe. Make no mistake, even the smallest obstruction of a few millimeters can be just as problematic.

I am healing well. My neurosurgeon saw me this week and said I was in far better condition than most patients he sees a few weeks after surgery. Though I’m tired and groggy most of the time, I feel relief from the chronic pain in my neck and shoulders I’ve endured for far too many years to recount. The headaches I dubbed the “Chiari Headaches,” not to be confused with my migraines, are gone! I feel a new sensation of clarity slowly creeping into my brain, masked by medications and sleepiness, I can sense it. And that is a beautiful thing.

I’m sad that my daughter needs to undergo this procedure a second time, but I wish for her all of the relief she can possibly obtain. She was a prolific athlete and misses it more than I could ever understand. She had to quit because the Chiari symptoms took a rapid grip of her head and body. It will bring our family a great joy to see her back on the ice figure skating or on the river rowing crew, or whatever other sport she picks up.

I’ll end with this. If you are living with Chiari, know that it is treatable. There is no cure, but quality of life can be vastly improved. If you suspect you might have it, talk to your doctor or a neurologist. The only way to detect it is by MRI. Be proactive, take control of your health. It took me a long time to reach this point, I’m 40 now, I was diagnosed with Chiari at 39. It’s never too late.
UPDATE: I learned while sharing this on Twitter that September is actually Chiari Awareness Month. I had no idea. Glad I was able to contribute in this small way to building awareness. – DTG.

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5 thoughts on “Living with Chiari, Recovering from Chiari Surgery

  1. Pingback: Living with Chiari and a Second Surgery for My Daughter | dtgriffith

  2. My daughter athlete is going off to college but desperately needs relief for her Chiari symptoms. Surgery is being scheduled. I am concerned about the healing time and what the post op reality has in store. She has lived and played volleyball through this and recruited to a great university. She’s tough but the thought of possibly improving her health is very attractive just want to be real with her about the post op. Will she be trading one set of symptoms for another?? Can you advise on your experiences with post op, please.

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  3. Hi Marie. I presume your daughter is being scheduled for Chiari Decompression. Because she is younger she will likely heal at a similar rate to my daughter.

    After my daughter’s second surgery in September she was back to her pre-surgical activity level in about four weeks. It took at least a few more months to become completely pain free from both the surgical procedure and the condition. On top of the internal healing she experienced discomfort and pain around the scar tissue as the skin stretched and healed.

    It took me three full months to heal from surgery and a few more months for the Chiari Malformation pain to completely resolve itself. I was able to fully function by the time the three months were up in late October, but I still had to manage pain for a while.

    There are the psychological effects to keep in consideration, primarily depression. For my daughter, she had a hard time feeling positive and motivated as her life had drastically changed with the loss of her sports and regular activities with friends. She went from a national-level competitive athlete to becoming the “sick child” stuck in bed rather quickly during the initial onset of symptoms. If your daughter has any of these feelings, it may be wise to have her see a counselor or psychiatrist to help her through this aspect. A positive attitude will help a great deal through this process.

    To answer your question on trading symptoms, neither my daughter nor I have developed anything new as a result of the surgeries. Most of the Chiari symptoms that I had outlined in my original post above are gone – I still have those pauses when speaking sometimes. As I mentioned earlier, this is not an actual cure, but it does provide relief.

    Overall, we both feel much better. The surgery was well worth everything that followed. I recommend it to anyone who is deemed a candidate by their doctors. For our family it was life changing.

    I hope this response was helpful. I wish your daughter and family the best.

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  4. Hi! I hope this post finds you and your daughter Chiari symptom free and healed from your surgeries. My son is scheduled for his second Chiari surgery soon. His first decompression (January, 2012) was the minimally invasive option–craniectomy and laminectomy with no duraplasty. His life went back to normal and all symptoms gone. Six months ago, he started rowing competitively on a nationally ranked team. Soon after his Chiari symptoms started again with the debilitating headaches, vertigo, etc. He (just like your daughter) was devastated that his world just came to a halt. I’m hoping his Chiari revision surgery will only be the added duraplasty and that they won’t have to put in a shunt. Can I ask what your daughter had done the second time and if she was able to get back to competing on her sports teams? Where there any physical restrictions placed on her the second time? My son is so worried that his doctor will tell him not to row or weight lift after his recovery.

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    • Hi Michelle, thanks for sharing. My daughter’s second surgery entailed replacing the original duraplasty, which had formed small boney plates on it, and replaced it with bovine tissue. The surgeon also removed excessive scar tissue. She’s doing much better in the sense that the Chiari Malformation is still clear according to recent scans, but she’s still having neurological issues. She’s developed a chronic migraine condition, much like me, and is being assessed for possible Fibromyalgia.

      Our neurologist pointed out that we are both wired with a sensitive nervous system thanks to the malformation and chronic migraine, so it’s a little difficult to sort out what may be causing symptoms. My daughter also has Postural Orthostatic Tachycardia Syndrome (POTS), which isn’t serious, but it adds to the complexity.

      As for sports and physical activity, she was told she couldn’t return to rowing for several months, so she joined her high school’s color guard back in August and continues with that. She plans to go back to rowing eventually, our neurologist cleared her for it when she feels ready. Your son will have some physical restrictions for a while. A lot of it will be determined by how he is feeling and what sports may put him at risk of injuring his head. Also consider he may be prone to continued neurological symptoms like headaches, vertigo, ear ringing, and tingling in extremities that are triggered or exacerbated by the sports. He’ll have to figure out what he can handle and overcome them.

      I wish you, your son, and your whole family well as you go through with the next surgery. Take care.

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