Samantha's Treatment For Chiari & Syringomyelia

Hi, my name is Sam, and I am raising money for a procedure called Filum Terminale Sectioning. Those that know me know that my world has recently been turned upside-down when, after 14 years of struggling with debilitating pain and many concerning neurological symptoms, I was diagnosed with a progressive condition called Chiari I Malformation and Syringomyelia.

Chiari Malformation is a condition in which a part of the brain called the Cerebellum compresses on the brainstem and descends into the spinal canal, many times blocking the natural flow of Cerebrospinal Fluid (CSF). This can cause a multitude of neurological issues - the most common symptoms I have being: headaches, balance and coordination issues, vertigo, vision changes, numbness and tingling, neck pain, muscle weakness, difficulty swallowing (dysphagia), insomnia, and many many more. In addition to this, I, like many Chiari patients, also developed an associated Syrinx in the spinal cord. This is essentially a cyst that forms in the spinal cord filled with CSF, which over time can grow longer and expand outward causing damage to the spinal cord itself and the nerve fibers surrounding it. In addition to these expressions of Chiari, many people also have a list of other diseases and conditions that are not considered “directly related” to Chiari, but are linked to the condition.

My MRI of the cervical spine showed my cerebellar tonsils to be descended 12mm below McRay’s Line, which is pretty significant compared to many. My syrinx was measured to extend from the C3-T1 vertebral levels, with expansion (damage) to my spinal cord at the T1-T2 levels, and I was found to have mild multi-level Degenerative Disc Disease throughout the thoracic spine as well as a visible, abnormal straightening of the neck (Kyphosis). Apart from this, I also have symptoms that indicate that I have a condition of the central nervous system called Dysautonomia which can be common for Chiari patients to have, but is not a “normal” expression of Chiari. I experience tremors, episodes of near-fainting (Pre-Syncope), Orthostatic Hypotension, exercise intolerance, inability to regulate body-temperature, episodes of vision loss, reduces sensation of touch, shallow breathing, and many more.

Upon diagnosis, I was immediately scheduled to have a brain surgery called Chiari Decompression Surgery within weeks of being consulted by a neurosurgeon. This surgery involved a moderately invasive technique that involves removing part of the skull (Suboccipital Craniectomy), removing the first vertebrae (C1 Laminectomy) as well as cutting open the Dura (Expansile Duraplasty). This procedure was terrifying for me to mentally and physically prepare for, and yet I felt that I had no choice but to get through it, as my symptoms had progressed badly enough to no longer be able to function a normal life. I was constantly in severe pain that was not eased with pain medication and was exacerbated by all types of therapy, and I was having damage to my spinal cord, putting me at risk of paralysis.

My surgery was performed in Newburg, Indiana on July 24th where I stayed in the hospital for 3 nights. Following this surgery, it took 3 weeks to mostly recover from the procedure. Recovery involved intense headaches from swelling of the dura, inability to move my neck from side to side due to the surgery involving the neck muscles to be separated for 2 hours, and difficulty swallowing (dysphagia). It was very hard to eat food and to take medication. I was also not allowed to bend over or lift anything, and sometimes even standing up caused painful throbbing in the head. It was a rough recovery, but I was optimistic because it seemed most of my symptoms had greatly improved. At 3 weeks, when the headaches cleared, I felt really good other than having very mild residual muscle spasms, which was not unexpected, as I was still to expect my syrinx to take many months to a year to hopefully shrink on it’s own. However, around 7-8 weeks post-op, my symptoms started to return and some seemed to worsen. My muscle spasms and nerve pain were back, I was waking every hour of the night again, my vision problems worsened and so did my Orthostatic Hypotension. Then I had another near-fainting spell (Pre-Syncope) which was followed by two whole days of numbness and loss of sensation in my hands, face and chest, difficulty regulating my breathing, dizziness, and severe brain fog with dissociation (a sense of non-reality like being in a dream). I was back to having stroke-like episodes that had me terrified for my life.

After having my symptoms double-back on me, I felt utterly defeated. While I trust that my neurosurgeon did a good job with my Decompression Surgery, I feel I have fallen into the 40%+ of Chiari patients that don’t see improvement with treatment and possibly continue to progress worse. Meanwhile, I have been following some Chiari support groups and have learned quite a lot on my journey since I have had my procedure done. What I have found is that many decompressed Chiari patients end up having to undergo multiple surgeries due to symptoms returning, worsening, experiencing new symptoms, or experience some scary (and painful) complications. Some end up having more invasive surgeries done such as having a shunt put in, intradural tethered cord surgery, cauterizing the cerabellar tonsils, etc.. I have heard of some individuals having their 8th surgery!! This is absurd to have to endure.

I have recently found out, however, that there is a far-less invasive surgery that is being done at the Chiari and Syringomyelia Instutute of Barcelona that has had at least 30 years of research behind it and a much larger percentage of positive outcomes and relief from symptoms. And not only that, but most report completely gaining their life back! Some even stating that they have improved so much that they forget that they ever even had Chiari! The procedure is called Filum Terminale Sectioning, and is not done here in the US. The Institute believes that in many cases of Chiari and Syringomyelia, there is an underlying cause of the condition called Filum Disease, where the very end of the spinal cord that connects with the base of the spinal canal (Filum Terminale) and is meant to be elastic, becomes too tight, causing traction on the spinal canal. This traction can wreak havoc on the central nervous system and can cause the cerebellar tonsils to descend, which can in turn cause a syrinx to form, and in some cases can cause Scoliosis. The Filum Terminale treatment involves sectioning the excessively tense filum terminale using a minimally invasive extradural technique to eliminate the cause and prevent further progression of the condition. Rather than being bed-ridden and recovering painfully for weeks, this treatment allows the patient to only be admitted in the hospital for a day, and to be up and walking the next.

I have heard many good things and am following along with the stories of others in the US who have raised money to travel abroad and have had the operation done there. I sent my exhaustive list of symptoms, my medical history with my condition, and my MRIs to the Institute in Barcelona for preliminary review and have received an approval as a candidate for their treatment of Filum Disease. It has brought me to tears hearing that I may have a very good outcome from this surgery, and that I have the chance to actually resolve the root cause of my neurological condition. It has been beyond words just how difficult my life has been, living in constant pain and experiencing traumatic stroke-like episodes and dysfunction of my central nervous system. I would like to be able to experience normal life with my two kids as they grow up and to be able to travel and go on adventures with them. So, here I am asking for help, which is something that is very hard to do. I am still in the process of paying off the medical bills from the decompression surgery, and have been out of work for 4 months. I am unable to return to work like I thought I would be able to, and need to have the chance to function well enough to make a living for my children and myself.

Since this treatment is done in Spain, the costs are not covered by insurance, otherwise I’d jump into this and cover the remaining costs over time. I will need to have funds to cover the consultation, surgery, passport registration, flight, stay and food, and I will have to be abroad for about a week. I need as much help as I can get and I greatly appreciate all who have listened to my story and supported me this far. Thank you so much.

Sam