Melissa Den. Chiari Malformation, Cord Traction Syndrome. Descent of the cerebellar tonsils. Discopathy.

Published by ICSEB at 27 October, 2023

11 years Post Intervention-Sectioning of the Filum Terminale

31^st May 2023

Hello my name is Melissa Den and I live in Australia. In September of 2012 I was diagnosed with Cord Traction Syndrome, Descent of the Cerebellar Tonsils and Discopathy. Following this diagnosis I underwent the Sectioning of the Filum Terminale by Dr M. B. Royo Salvador at the Institut Chiari & Siringomielia & Escoliosis de Barcelona on 4th September 2012.

I write now to share my present health condition. Looking back over my first testimony written shortly after the intervention (the sectioning of the Filum Terminale) my message remains true; I have continued to enjoy much improved health overall. There has not been any adverse side affects to having had the procedure at all, only benefits.

Reading through The Filum System: A brief Guide written by Miguel B. Royo Salvador, this has given me more understanding of Filum Disease and how it affects the brain, spine and nervous system. I now understand that this cord traction has affected my brain, spine and entire nervous system. It has been very interesting learning about why I feel like I do and the results of reversible and irreversible injury within my body. Knowing the sectioning of the Filum Terminale has ceased any further progression of the disease has been a great relief. Eleven years on I live with some irreversible injury but am finding ways to live and try to avoid things which I have learnt aggravate  my condition.

I would also like to mention that in 2018 I was treated By Dr Wouter Schievink at Cedars Sinai Los Angeles California for a Cerebral Spinal Fluid leak.  Dr Schievick performed a laminectomy to surgically repair a 7mm tear in my dura.

For Filum Disease patients there is a possibility that other direct family members can be affected by the Disease as well, as it was with our daughter.  As a young 5yr old I noticed physical things that were unusual for a child of that age.  Given I had been treated for Filum Disease we had MRI’s done for our daughter and sent them to Dr Royo. The MRI revealed no clear evidence regarding our daughter having Filum Disease but we were advised to see how she goes, especially at the time of puberty and growth within the vertebral column. Ten years on and with Filum Disease symptoms present a second MRI was done when our daughter was 15yrs. This MRI report showed possible evidence of the condition. A clinical examination in Barcelona confirmed this and sectioning of the Filum Terminale was performed on our daughter in March 2022. Just over one year now since treatment and our daughter has benefited from the procedure with the most noticeable change in reduced back pain and headaches.

Once again I would like to thank Dr Royo and the team at the Institut Chiari & Siringomielia & Escoliosis de Barcelona for the work they do. Thank you for your time in reading this testimony. I pray that me sharing my journey may be a benefit to you or someone you know. I hope and pray as I gain more understanding about Filum Disease that the Lord may use me and my story to help raise awareness about the condition.

I continue to thank the Lord for His guiding hand upon my family and my life.

Blessings to you
Melissa Den

Email:  [email protected]

Surgery date:  September 2012

Hello my name is Melissa Den, I am 42yrs and live with my husband David and three children Isaac 9, Cooper 7 and Lucinda 5 on a small mango orchard in the East Kimberley of Western Australia.

After many years and several Doctors I was diagnosed in Australia by MRI in May 2012 with a crowding of the Foramen Magnum, Posterior Fossa and Fourth Ventricle along with descent of the Cerebellar Tonsillar. Chiari Malformation was mentioned. A neurosurgeon in Australia suggested decompression surgery if my symptoms were debilitating.  I researched this and had difficultly finding a specialist in Australia who had experience performing this surgery.

I am a Christian and I strive to seek Gods wisdom and direction each day in my walk with the Lord.  There were specialist in America which had experience in my condition and after much prayer my husband and I decided to send my health history to the States to see if they could be of help.  I wasn’t comfortable with the idea of decompression but with my symptoms getting worse and the nerves in my body starting to be affected I felt I had no choice.  Meeting the needs of my young family was becoming more difficult. I tell my story in the hope of helping someone else just as I was informed when I read other peoples testimonies. I will mention some symptoms only for the reason that someone else reading this may benefit. Lower back pain for over 20yrs, neck & shoulder pain/burning 15yrs, weakness in legs and arms, numbness in right leg and cramps, pain at the base of the skull (especially when I sneezed or coughed) daily fatigue, frequent nausea, heart palpitations, daily headache/fog, pain in jaw, cheek bones and behind the eyes, inability to think/poor memory, sore throat often which came to nothing, crackle and sound of wind in the ear, affected by the cold and heat (extremes made me feel sick) and motion sickness. These symptoms were subtle in the beginning but over the years became worse.

The forward direction towards the States started to come up against resistance.  Several things happened at once giving me a clear direction that God didn’t want me to take that path.  I turned to God in prayer.  I had wonderful support from our home church, family and many others throughout Australia who also prayed for me.  An answer to prayer came when God lead me to Chiari Institut in Barcelona, Spain and Dr Royo Salvador. I emailed through my history and MRI scan in July 2012.  Dr Royo and the medical staff viewed this information and concluded that in my case there were signs for Cord Traction Syndrome and Sectioning of the Filum Terminale surgery was potentially indicated. I was also advised that it was not possible to confirm this diagnosis at a distance; it can only be confirmed in a neurological examination at the Institute.

After much prayer and what we felt to be many open doors from God we left Australia to travel to Barcelona.  The neurological exam confirmed the diagnosis and intervention was performed the following day. As soon as I woke I could feel a wonderful change had taken place in my body. The intervention not only ceased any further progression of the disease but also healed me of so many of the symptoms I once had. Immediately my face looked different and my eyes appeared physically more open. I now have vitality and stamina. I feel like I have a new body. Some of the symptoms I had for over 20 years have disappeared. This was over and above what we could have ever imagined. This result was from minimally invasive surgery. At this time, it seems Dr Royo Salvador is the only specialist who is offering this treatment. Due to the procedure Dr Royo Salvador performs I was able to avoid major surgery and cease any further progression of the disease. Dr Royo Salvador, Katharina and the medical team have extended the highest level of care and professionalism towards my husband and me during our stay. I thank them for their patience in answering my many questions and the way they conduct themselves as a medical team – meeting the needs of the patient with much compassion.

Praise and Glory to God who has been my guide on this journey.  I pray this testimony will give direction and hope to others facing similar circumstances.