Thursday, July 7, 2011

25 Years of an Amazing Shunt

Tonight I am having a little internal celebration. I have reached a remarkable anniversary in my life. For 25 years now, a tube in my body called a shunt, implanted in my body to treat a neurological condition, has worked perfectly. It's never become infected, never broken, never became dislodged and I didn't outgrow it.

Before I was born, I was diagnosed with a cerebellum defect called Dandy Walker Variant. Basically, my cerebellum didn't fully form; there is a cyst in the space where the rest of my cerebellum should be; the fourth ventricle of my brain was a little dilated and a brain membrane called the septum pellucidum never formed at all.

The defect itself is medically inconsequential for me, but it caused the cerebrospinal fluid in my brain to accumulate. A condition called hydrocephalus. To drain this excess fluid, a tube called a shunt was implanted in my body when I was ten days old: from the fourth ventricle of my brain to the peritoneal cavity, a space in the upper abdomen.

But even this shunt has been relatively inconsequential for me! Most kids who have shunts require at least one shunt repair or replacement before they reach adulthood. I'm 25 now and I have not required any. The pressure in my brain is great, as is the fluid level. Actually, I don't technically even have hydrocephalus anymore because the shunt works so well.

My shunt has worked so well it has prevented likely complications of hydrocephalus such as intellectual disability, serious mobility problems and life threatening illness. I am very lucky.

I've always seen my shunt as more of an organ than a medical treatment. In grade five science class, my class was asked to each choose an organ to do a project on. My teacher asked each child and wrote their responses on the blackboard. A few chose the heart, a few the lungs, kidneys, etc. I chose my shunt.

My teacher, who was made aware of my condition, asked me to explain my shunt to the class. In explaining it, I showed an understanding that the shunt was unusual and unique to me, but I also normalized the shunt by explaining how it kept me healthy and active -- just like any other organ would.

Even though the shunt is just below my skin (except for the part that goes into my brain of course) and I had a bunch of provisions growing up to protect it, I've never been afraid of damaging it, or of getting sick with hydrocephalus. Especially when my neurosurgeon told me that scar tissue had surrounded the shunt. This was my body's way of protecting the shunt, just like it protects any other organ. My body did not think my shunt was a foreign body, something to be destroyed. And I didn't either.

But I don't feel totally invincible. Medically, my Dandy Walker Variant and hydrocephalus have not been a problem at all with the shunt, except for some nerve damage that eliminated some peripheral vision from my right eye, but that doesn't mean I'll never have more problems. And I learned last year that an MRI or CT scan may not detect hydrocephalus if it is mild or intermittent. And it won't necessarily detect a shunt infection either. I've been having weird symptoms off and on for two years now since a weird illness following my wisdom teeth extraction in the hospital and I'm not convinced my shunt is not involved even though my scans are clear. The balance problems, stamina and leg fatigue issues I'd always had became worse.

And there's other unpleasantness.

And I do have a learning disability called the auditory processing disorder that makes following auditory directions difficult. My shunt hurts me sometimes, probably because of the scar tissue chafing it.

And I have a bunch of other relatively harmless, but difficult health problems and a long history of freak illness. Don't know if there's a connection between those and my brain, but anyway...

The Sunshine Foundation, that grants wishes to children will illnesses and disabilities, appreciated the struggles I faced -- my family faced -- and sent me off to Disney World in 1992. My dream was to meet Scrooge McDuck!

Isn't he handsome?

I didn't understand why I got this amazing trip. I still don't. I tend to feel guilty when I get sad or frustrated about my problems. A big part of me feels I have no right to complain because of the great health and mobility I have had in my life and how unusual these things are for someone with a shunt.

But I know I struggle and I've been through a lot Having had much better health and mobility than many with my problems does not invalidate my experiences.

Thanks for celebrating with me. And thanks to Scrooge, wherever you are. One day I will come see you again.


  1. Congratulations on 25yrs, that is amazing. Never for a second apologise for feeling well, you have been through a lot and feeling well now (fingers crossed the niggling symptoms pass) doesn't negate that. I know it's hard sometimes as there is always someone else who is worse off, but that doesn't invalidate your experience. I hope you do go out and celebrate in style. :)

  2. Here's to many more healthy years! I didn't know any of this about you. I hope the symptoms pass on their own and aren't indicative of any serious problems. You are amazing :)

  3. Scribe IS handsome! :D

    You're absolutely right. We have to celebrate our health victories. Congrats!

  4. Well done. And thank you for being brave enough to share that with us.

  5. What an eye-opening story. Whatever joy you receive you do not need to feel any guilt for.

  6. Congrats on your 25 years of bravery. Such narrative eloquence in sharing your personal experience.
    Wish you many more happy & healthy years.

  7. Rusty - Thank you! I meant that I felt bad for feeling like I'd suffered, not bad for feeling well -- Though when I was younger I felt that I'd gotten away with something for having such "luck." I appreciate your comments on validation, especially knowing you have read so much about my health experiences here.

    Dom - Thank you! I don't foresee shunt problems in the near future. Ha ha. I also hope things pass.

    Danine - Gotta love Scrooge! I'm glad you understand about celebrating "health victories" Thanks!

    MorningAJ - Aw, thanks. It doesn't feel brave, but I guess it is.

    LPC - Thank you! I like "eye opening" and I'm glad it had that effect on you. I don't feel guilty for my luck.

    Yaser - Welcome to my blog and thanks for the compliments! I don't know that it's bravery as it feels that all I've done is live fully and make things work -- something most of us born into this situation would do. You adapt. You grow.

  8. Somehow it does seem amazing that this procedure has worked so well over so many years. It must be meant to be. Best wishes for many happy and productive years still ahead!

  9. Ashley you are just an amazing person! Your journey has truly been challenging. This is such an informative blog....I love reading all of your articles....You are so articulate, and your beautiful personality shines through everything you write.

  10. Mythopolis - Yes, it is amazing to me too! Thanks.

    Anonymous - Aw, thanks. I'm blushing! I try to write with personality as much as I can. It's important, I think, especially in a blog. People come back for the personality as much as they do for the content.

  11. Thank you for sharing your story my 4 year old has dandy walker variant as well and has had her shunt for 3 years now with no problems. Your story gives me hope that she can make it to 25 without having to have a new shunt placed.

  12. Mommy - Thanks so much for your comment! I'm glad to read about your four year old. I've gotten many comments from mothers of young children with DW thankful to me for telling my story because there is so little information out there on adults with DW. It's so lovely to know that I have been a resource to you.

  13. thanks for finding my blog and leaving a comment today! really appreciate it!

    and congratulations to you and your shunt for a great 25 yr relationship. God bless you and keep you healthy and happy!

  14. I have a shunt and Dandy-Walker Variant as well! I did outgrow mine and had the tubing extended when I was 7, but I've been living in great health with the shunt since I was a month old (I'm 21 now). Thanks for sharing your story. Here's to many more years of health and happiness.