I am relieved to announce that my neurosurgery that took place on Wednesday 13th January at 7:30am was successful, even though there were many unexpected serious life-threatening complications that occurred during the five hour operation. The specialist neurosurgeon expressed that he was amazed how I even made it alive here to the USA and that I was one of the most challenging patients he has had to operate on. He discovered that the amount of compression on my brain stem was at fatal levels – he said I must of had a guardian angel by my side!
They ended up needing to extract more bone marrow and ribs to use for my upper vertebrae because my spinal bones were far smaller than normal. This was in order to safely drill multiple metal plates and titanium rods into the back of my skull, and fuse these all together to create stability (like an internal neck brace) after they realigned my skull to a normal relationship on my spinal cord to stop the fatal levels compression on my brain stem – you can call me “Bionic Laura” from now on ha! Another interesting strange fact from this surgery is that I have grown an extra inch in height – so now I am 5ft8!
I was admitted into the intensive care unit for five days due to the complexity and severity of the surgery, and also my vitals being quite sporadic due to my autonomic dysfunction which is another different diagnosis additionally to my EDS and PoTS. In simple terms, my body’s autonomic nervous system is unable to regulate the majority of my bodily functions (e.g. blood pressure, heart rate, body temperature, breathing, swallowing, sweating, etc.) so after a traumatic surgery like I have just had, my body has been finding it even more difficult to find a balance which has been very challenging for me and causing me to have even worse symptoms. I have especially been struggling with my pain levels (rating 8-9/10), body temperature (average 94F/34C which is hypothermia), numbness on the back of my scalp and my left limbs, full body shakes, muscles spasms and visual problems.
My time in the critical intensive care unit was ‘top-notch’ service as I was looked after by the most wonderful nurses and daily visits by my incredible neurosurgeon. I also have been surrounded by my family and close friends who have travelled from a far, and those who have been sending me messages, prayers and flowers – I am so grateful for all of your efforts and support as you have helped me feel so loved, cherished and comfortable in such unfamiliar surroundings and help me get through one of the most difficult struggles of my life.
Some positive news from this surgery is that the symptoms I was experiencing before have decreased tremendously so soon after! Some of these include the pins and needles/numbness in arms, scalp and face have decreased; pain level in neck has gone from a 9/10 to 4/10; my speech is improving and not as slurred; part of my peripheral vision has come back; less black dots in my eyes; short term memory has improved; no nausea anymore; no sleep apnea and gasping for breath etc….but a further 6 months to a year, these symptoms related to my neck problems should dissipate even more hopefully once the trauma/inflammation has calmed down and the healing process continues.
I was discharged on Sunday and am now starting to really “digest” the severity of this life changing surgery, trauma and pain. I have to admit that the hardest thing about this process is the feeling of losing your independence and the need to depend upon others around you for the smallest of things. My family are my rock and they have been above and beyond supportive for me physically, emotionally and mentally.
Even though I know I have only just jumped over the first large hurdle, I still have many more to come. I am already learning that patience and taking time is the key to everything in life, and ‘listening’ to your body is most important to understand your boundaries.
Recovery cannot be sprint. Instead, it is a marathon that I know I can and will complete each and every day for the rest of my life. Please do keep supporting by donating and spreading the word of my lifesaving neurosurgery and life-long rehabilitation care by clicking here