HELP ME Myelomalacia and Syrinx after SCI C2

[tifffanylynn]

I'm a quadriplegic with myelomalacia, post traumatic syrinx, tethered spinal cord, multiple bulging disc C3-T1, 2017 C2 C3 fusion, 2020 syrinx symptoms begin, 2022 C2, C3 and C4 decompressive laminectomy, 2022 shunt placement. The shunt was supposed to help with my symptoms. However, they keep getting worse. Causing nerve pain on my face, lack of feeling. Why is it affecting my face? Why is it still getting worse? Will I ever have a new normal? Every day my body is changing. My anxiety and depression is severe. DO DOCTORS KNOW ANYTHING?! Is me getting in my wheelchair and moving my neck causing the progression?

[Sara_MHModerator]

Hello and welcome to the forum.  Gosh, you have had a long road and it's been complicated.  I'm sorry it is like this for you.  Your doctors are your best source of information but very frustrating that they aren't helping you with this.  When they don't have answers, we can feel lost.  I would remain persistent in asking your doctors to help you understand and treat this. There is something that sounds like this called trigeminal neuralgia. https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/diagnosis-treatment/drc-20353347  It can be nerve pain that is shock like but also some report numbness in the face. They do treat with various medications.  When is the last time you spoke to your neurologist about this? During your decompression surgery or shunt placement, they could have indeed done 'something' that needs to be addressed.  You wrote this a month ago. Has anything changed?

[tifffanylynn]

Yes it just keeps worsening. My face, back of head has nerve pain, burning, loss of sensation, can hardly  feel, left side worse than right