Syringmyelia Awareness: The Human Side of SM / CM Part 2

Re-Posted from The Royal Spaniels Fall 2008 by Tammi Brown

The decompression is the most common surgery done on CM patients, which is the same surgery they are currently doing on Cavaliers. In the Winter 2007 Edition of Royal Spaniels, Dr. Dominic Marino wrote of this surgery on Cavaliers. In combination with my neurosurgeon, Dr. Paolo Bolognese, the two of them worked together to perfect the cranioplasty (placing a titanium mesh and a bone cement cover over the portion of skull bone that is removed). In both humans and dogs, the decompression surgery is designed to create more space in the back of the head in order to restore the proper flow of cerebrospinal fluid, which in return will hopefully reduce the size of any syrinxes.

Every neurosurgeon has a different approach to this surgery. Unfortunately, some neurosurgeons, because they are uneducated about Chiari, can do more harm than good.
Research has shown that brain surgery can improve symptoms for about 80% of patients, but fails 20% of the time. I fall in the latter percentile. After about three months, all of my symptoms returned. I was unable to return to work and had to give up my dream job. Over the next five years my symptoms increased. I started having major low back pain, bladder issues, and loss of sexual function, increased headaches and neck pain. Even though Chiari malformation was described back in the 1890’s, the in depth research on both CM and SM didn’t begin until the introduction of the MRI. To this day, they are both still considered rare conditions and a great deal is still left to be learned.

From 2002 to 2006, a new theory was born regarding the cause of Chiari in several patients. The theory was tethered cord syndrome, a condition where the spinal cord tissue is abnormally attached to the bones of the spine. The filum terminale is a fibrous thread which connects the very bottom of the spinal cord to the coccyx bone. If it is unusually thick, or tight, it can essentially place the spinal cord in traction, pulling it down along with the brain stem. In 2006, Dr. Bolognese diagnosed me with tethered cord syndrome and told me I would need to have more surgery. He told me my brain stem was stretched to its complete maximum. He also told me I had cranial/cervical instability/settling, which means my head is bobbing on top of my spine and my head is settling down into my neck. Many other CM patients have this condition, which can be caused by whiplash or from a condition called Ehlers-Danlos syndrome (a connective tissue disorder). In my case, we believe the cause of this instability is due to the forceful chiropractic adjustments of my head which, for years, brought relief to the very top of my spine and neck For this condition, a cranial/cervical fusion is recommended. This surgery is the most invasive surgery of all because rods are screwed into the skull and cervical spine to stabilize and lift the head permanently.

In January 2008, I had my spinal cord un-tethered. The surgery revealed several defects within the lower spine that had been continuing to obstruct the proper flow of spinal fluid throughout my spine. These defects were repaired. Three months after the surgery I began physical therapy, which will be a life long process, in order to keep my neck muscles strong to avoid the cranial/cervical fusion. Six months post-op my MRI’s revealed the syrinx in my cervical spine finally getting smaller, meaning the last surgery did its trick in restoring proper spinal fluid flow. Things are starting to look up.

Is there a genetic component to Chiari malformation? No gene has been identified as of yet, but scientists have identified specific chromosomes where genes may be located. There are a number of families in which several members have been diagnosed with CM. In October 2007, Extreme Makeover: Home Edition featured the Carter family from Billings, Montana where the mother and her three daughters are all suffering from the devastating affects of CM and SM. Some have thought the small posterior fossa (the base of the skull), which tends to be abnormal in Chiari patients and Cavaliers, could be the genetic link. However, when studying families such as one of a family with four generations of CM patients published in the January 2008 Journal of Neurosurgery Pediatrics, they showed no such link.

Not a day goes by that I don’t continue to have many symptoms. Some days it is hard to get out of bed, especially really rainy, overcast days. When there is a big pressure system moving in the pressure in my head/neck increases, which was much worse before my decompression. Unfortunately, I notice my dog being more lethargic and having a tougher time getting going for his morning walk on those types of days. My symptoms also increase with stress, anxiety, bright lights, loud noise, commotion, reaching, pulling, upward or lengthy neutral head positions, strong smells and even certain foods.

I have made the environment for myself and my dog as non-toxic as possible through using green household products, body products, and as much organic food as possible. Although I do have to take medications, I fill my body with whole food supplements to counteract the negative effects. I use Young Living therapeutic grade essential oils for all different kinds of remedies: pain relief, stress, energy, migraines, sleep, memory, perfume and much more. I even use an herbal flea collar that is made out of essential oils, as I am concerned with the flea control that requires placement on the spine. With proper knowledge many of the Young Living oils, along with the Young Living Raindrop Technique (a technique designed to bring the body into structural and electrical alignment) can be used safely and effectively on animals. Many other alternative therapies can be very effective for humans, as well as dogs, such as: cranial sacral therapy, massage therapy, acupuncture, reiki, chiropractic/kinesiology (when they know what they are dealing with). Unfortunately, it is the cost that keeps most away, as there is no “one time fix” and most aren’t covered under insurance.

Living with Chiari and syringomyelia is a lifelong engagement. It is a long road to acceptance, but the journey brings new friends, greater appreciation for life and the ability to overcome the guilt about the work that isn’t getting done while you rest. It teaches you to appreciate every moment, to be thankful for the good days and not take life for granted. As fellow Chiarian Sheila Reilly writes in her Chiarian Creed, “I will not ask, ‘Why me?’ While Chiari has weakened my physical body, it has strengthened my heart, my soul and my spirit.”

Living with a Cavalier with Chiari and syringomyelia is very humbling. He has helped me find JOY. He has brought such laughter and unconditional love into my life. His tail never stops wagging, he never stops smiling, he never admits pain and his life revolves around me walking by so he can tip over in order for me to rub his belly. Who knew living with a Cavalier with CM and SM would be so enlightening. On the days I am feeling my worst, he inspires me to get out of bed. He inspires me to go for a walk and keep moving through my day no matter how I feel. He is always an inspiration as he is so full of life, extreme joy and lives in every moment. We really can learn a lot from our dogs. Mostly, I wish I could learn how to get someone to scratch my belly every time I rolled over.

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  1. Thank you so much for sharing your story. I have found you truly inspirational. I am so sorry for your pain but I feel your strong spirit in your words. It seems like you have a special healing bond with your cavalier. You know some things that he feels and can help and he has helped you bring laughter and love to your life.

  2. I guess finding useful, reliable information on the internet isn’t hopeless after all.

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