Published by ICSEB at 6 June, 2025
Surgery Date: 19 September 2024
Date patient testimonial: 19 May 2025
My name is Christina, I am 43 years old, and I live in British Columbia, Canada. I’m a mother of two children. At age 30, after seven long years of unexplained and often debilitating symptoms, I was finally diagnosed with Syringomyelia when doctors discovered my cervical syrinx. Before that, I had been misdiagnosed fibromyalgia and blaming my mild thoracic scoliosis and herniated discs in my cervical and lumbar spine on all my symptoms. Despite my worsening condition, doctors insisted those findings were the root cause of my symptoms, yet offered no real solutions or surgical interventions. I was told to learn to live with it and pick my own path.
The next twelve years were the hardest of my life. I deteriorated gradually, experiencing increasing pain, weakness, and loss of function. The last three years were especially brutal. I was in constant, severe pain. Every step I took felt debilitating. I couldn’t do anything without suffering. I begged for help, but I was dismissed by dozens of doctors, including my own neurologist. I was repeatedly gaslit and passed around by medical professionals until I felt completely abandoned. No one would listen to me. No one wanted to help me. I lost all hope.
In desperation, I turned to Syringomyelia support groups on Facebook, hoping to find advice or direction. That’s where I came across a woman sharing her experience of having surgery in Spain at the Institute of Chiari & Syringomyelia & Scoliosis of Barcelona (ICSEB). She had undergone the Filum System® surgery and was doing incredibly well. I reached out to the Institute immediately, submitted all my medical scans, and was soon told I was a candidate.
Thanks to the generosity of those who supported my fundraising efforts, I was able to travel to Spain and have surgery with Dr. Salca on September 19, 2024. From the moment I arrived, I received some of the best medical care of my entire life. Every staff member treated me with compassion and respect. It was deeply emotional to finally be validated to be seen and heard after more than a decade of being dismissed. They even discovered that I had Chiari Type I, something that had been completely missed back home.
The English translators were incredibly supportive and stood by my side through every step of the pre-op and post-op process. The hospital staff were attentive, kind, and thorough. My experience at ICSEB and Hospital Sanitas Cima was truly life-changing.
As I write this testimony, I am eight months post-op, and I feel incredible. In fact, I felt better almost immediately after the surgery. I no longer experience any symptoms of Syringomyelia or Chiari. I finally feel free in my body something I hadn’t felt in a long time. I’m not just surviving anymore; I’m thriving.
I am forever grateful to the compassionate team at ICSEB and to everyone who helped me get there. They didn’t just treat my condition they saved my life.
Below is a list of symptoms I dealt with for almost 2 decades. Now they are a thing of the past.
Head
- both ears have tinnitus, sometimes one can go quiet or people sound under water, especially when I’m in a group of people. Like the mall or a dinner party, restaurants, meetings with work, crowded waiting room.
- lots of tension headaches that go up the back of my neck and head over the top and over behind my eyes.
- I have terrible sensitivity/pain in my mouth that has been stumping my dentist. There is no dental reason for this type of pain I’m having in my mouth.
Neck
- neck goes into deep protective spasm monthly. Very stiff/hard muscles . Often causes my entire spine to go into spasm over a few days. Usually last 7-10 before it’s over. But then tender still a couple days.
- feels like a tight elastic band at the back of my neck to shoulder blades could snap.
- sometimes my head feels like it will roll off my neck. Like my neck can’t hold my head on it.
Shoulder/shoulder blades
- between them right in the middle hurts badly. To press also. Shoulder blades burn and ache. The more I move my arms, the worse it’s gets. When it’s really bad it becomes painful to take full breaths or deep breaths. It can also activate with walking from lumbar and creep up my back to my shoulder blades.
- hurts my upper back to sway my arms when walking
- folding laundry, washing dishes, cleaning a mirror or other repetitive arm movements activates the shoulder blade pain badly. It can also go into spasm with repetitive motion of the arms.
Left/Right Arms & Hands
- both arms can have nerve pain going down into fingers that radiate from the base of my neck. Usually into the first 3 fingers. •Sometimes my hands spasm into a tight claw shape.
- I can get some pretty bad joint pain in elbow and wrists. Where it hurts to even micro bend or naturally sway when walking. I’ll have to put my hands in pockets to support them when walking. I often need to use a brace to keep them from bending so I can do normal daily tasks. I started wearing the braces in 2010.
- temperature is often tough with fingers. Not feeling the cold/hot correctly.
- easy to cut myself and I don’t know until blood is squirting.
- hands and fingers go numb daily and multiple times per day. The triggers can be: if my hands pushing a stroller, grocery cart, working at a table that cause my hand to be high than my elbow. Same with typing on a keyboard if the table is too high. Eating food and raising hand to mouth, brushing teeth. Also during yoga class when my hands have to be held above my heart. I have to drop my hands often and shake them. The numbness can be painful.
- hands held above head, blood drains so fast and feels like prickles, sharp.
- when sleeping on left side right arm goes numbs and visa versa.
- I’ve kept short hair since even before I was diagnosed because the weight triggers headaches, it’s too hard to keep longer hair tidy when my arms constantly fail me.
Ribs
- spasms with intercostals muscles
- ribs can feel bruised to the touch, can’t wear tight bras or shirts.
- can hurt to take deep breaths when they spasm.
- Sometimes it feels like someone has hit me with a bat in the ribs most days.
Hips
- Hips daily are very painful. Throb, radiate, burn. I often wake with them still sore from prior day unless it was a day off work and I was low key.
- Right hip has more chronic severe pain over left. Every bend, walking and even turning corners while driving are painful.
Lumbar
- tender to touch, sore, achey, stabbing, throbbing.
- my lumbar goes into spasm every 2wks about and as the day progresses the spasm goes up and cause my thoracic and cervical spine to go out.
- lumbar is loose. Lots of instability. I can hear a knuckling sound when I move or twist. especially in yoga classes and getting worse with every passing year it seems.
- the more I walk around doing everyday regular task, the more my lumbar tightens and back muscles under rib cage. Becomes excruciating by dinner.
- it’s painful to semi bend and hold over a sink to brush my teeth and because my arms don’t like to be raised, I have to brush my teeth folded over counter with face in the sink brushing to support myself.
RIGHT LEG
- R hamstring cramps, stabbing pain,
- R sciatic /has been pretty constant over 10yrs. I’ve asked to have my leg amputated but my neurologist says it wont help and I’ll still have phantom pain. I’ve asked twice for amputation 3-4yrs apart. It rattles me bad.
- tendonitis like pain in feet. Especially worse in summer when swimming. Happens with repetitive kicking motion. Also happens when we get cold snaps into the minus during winter.
- big toe numbness and/or first 3 toes.
- feet go numb when walking, driving. Have to wear super loose footwear. But sometimes there is just no trying to avoid it. They go numb multiple times per day.
- knee pain, no pattern. Happens randomly.
LEFT LEG
- big toe numbness and/or first 3 toes.
- feet go numb when walking, driving. Need loose foot wear.
- knee pain
Left leg is considered my “good leg”
Body as a whole
- sometimes my skin can hurt to be touched. Getting dressed and even pulling down pants to use the washrooms hurts my skin.
- Flu like symptoms without fever.
- sometimes it can feel like I’m walking in thick mud. Have to walk with small gait. •Lifting legs hurts/feel weak to do stairs.
- legs flush with tingling and weakness when I climb stairs. Often need to pause to wait for some sensation to come back.
- can feel like cold water is being dripped down the back of my legs.
- can’t blow up balloons. An arm or leg will go numb and be painful. I can feel bubbling sensation and the base of skull. Pressure and pain.
- when my pain is real bad it makes me very nauseous and I have to take gravel to get some food in me. When the pain is extreme I will vomit. I had chronic vomiting the last few years when I was at my worse.
- If I have a good restful sleep I have the ability to have a little less pain when I wake up. If I had a hard day prior, it can take a few days to recover. Days off I cannot do much but rest in bed so I can handle work coming up.
- when I work, my pain increases thru my shift and by dinner I can’t even stand at the stove to cook dinner and need a stool.
- I wasn’t able to grocery shop. The bags too hard to carry and the cart hurts my back to turn corners. Arms go too numb. Spasms would activate in my back.
Contact details:
Email: [email protected]
Instagram: @stina.k.e
