In March we decided to fly for an appointment with a neurosurgeon who specialises in EDS and other connective tissue disorders patients. Dr Gilete from the Teknon Clinic examined Alicia during our visit to Barcelona. We brought all our previous medical tests results. First, an interview with Alicia, then a study and analysis of MRI scans. Already on an ordinary MRI, he noticed and pointed to anomalies. This is the first doctor we met, who combined all the dots. At the same time, he is an extremely friendly, empathic man with great experience as a neurosurgeon.
When we talked about all Alicia`s symptoms Dr Gilete nodded understandingly and said it was typical. Why have we not met such people before? Dr Gilete told us what he suspects and to be 100% confident, he requested additional MRI in an upright position with tilting and twisting of the head.
That’s what we did. We were referred to the Medserena Upright MRI Center in Kensington, London. Being still in Barcelona, just after talking to Dr Gilete, I made an appointment by phone. This is one of the few places in Europe that performs this specialist study. Dr Gilete described in details the scans he expects.
It cost us nearly 3,000 pounds. In contrast to traditional MRI, where the test is performed in a horizontal position, the Upright MRI test is also performed in a vertical position. In this case, there is a completely different cranial pressure on the spine. The study in London lasted almost two hours and Alice was scanned in various positions of the body and neck (straight ahead, bending the front, bending the back, bending the sides). We know that for this specialist MRI, patients from many other countries also come to London.
We have received CD-ROM with scan right away in Medserena Upright MRI Center. After going back to our hotel scans were sent via the Internet to the clinic’s server in Barcelona. We were very stressed while waiting for the answer from Barcelona.
Before Easter, we got the description and the final diagnosis of Dr Gilete. It was shocking and frightening for us. Principal diagnoses related to the current situation: Superior Odontoid migration (SOM) and Rotary Atlantoaxial Instability (AAI). According to Dr Gilete, neurosurgical surgery is needed as soon as possible. Cervical fusion is currently the only option for cervical instability. Symptoms will only worsen if left untreated until Alicia is left completely bedridden and pain is unbearable. Intestinal paralysis, seizures, dysphagia, trouble breathing, and general paralysis, sepsis, are common issues in advanced cases.
We were given two dates – April 26th and May 24th. For financial reasons, we had to choose the second date for a surgery. Now we are waiting impatiently for the surgery and we are doing further diagnostics. Everything is urgent.
Thank you for your donations. You can help us here – www.gofundme.com/liferoralicia.
Alicia is on the edge and needs your help now. She suffers from rare diseases and is going to have life-saving surgery. We also need to raise funds for additional costs related to a neurological surgery in Spain and further medical tests for EDS, POTS and MCAS. Please, help us to Save Alicia`s Life.