Well what a ride this one turned out to be!
Started with some self-care. What everyone has been banging on about for past few years now. I found the perfect Osteo literally a 2 minute drive from my house, could get there early for a 9am and then off to work. She understood EDs, she understood me. She was willing to work with SIEDS as she understood the importance of my exercise (which they banned), this were great until the weren't!
We got to my neck. She felt the intense knotted muscle on the right side of my cervial spine, near the base of my skull. She set to work on it after consulting a mentor of her. Crano-sacral drainage they call it. She said it didnt feel right, that things were slow to drain, that my skull almost felt uneven. Took her word for it and tried to relax the best I could. It was a weird feeling. I ended up quite fatigued on the days she would literally drain my head.
Then came the migraines. The aura's were intense and they lasted so long I seemed to go out of one and into another. No headache really, just issues with my eyes and loss of feeling in my extremeties. I also found it really hard to talk. It was affecting work, getting the kids sorted. So I booked an appointment with my GP afer my osteo said she would do a support letter for the referral. We started with Muskoskeletal, both of which declined me outright. Then we tried the only Osteo-Spine surgeon I liked the look of. He met with me a couple of months down the track. Was lovely and had an EDS patient like me 10 years before and referred her to US to Fraser Henderson, the world renowned expert on EDS and CCI. I knew who he was as ive looked as loads of his You Tube lectures. I knew it was out of reach so said, what next? he said go back to your 'community' and find out who everyone else is seeing. I shot him an email and never heard back, I tried the Centeno-Shultz clinic in US and they needed DMX (digital motion xray) which from my knowledge doesnt exist here in NZ. I knew who to ask...
I went home and emailed my specialist hypermobility physio and she said she has worked with a surgeon at the conference last year in Brisbane. I emailed him straight away within a few days I got a reply with a patient registration form and a 5 page questionnaire. I filled out the form, had my Ortho Surgeon as referrer but also attached my GP and Osteo referral letters they had provided. The questionnaire was actually the most thorough I have had to date, i answered it twice and the outcome was interesting. I had never thought of my symptoms as MAJOR or MINOR before, most of the focus being on my cognitive state, memory issues, head and neck pain and dizziness/vertigo. That combo of symptoms are making it impossible to drive, think, focus, remember and I'm dealing with significant overwhelm from light, noise and lack of sleep.
The appointment was booked but had to wait a couple of months for a Zoom appt. Didnt realise that I had to get prior approval from health insurance so financed that myself and I'm glad I did as the report I got after first appt was worth it.
He asked my NZ surgeon to refer me for a MRI of neck and brain. The results came back before my appointment, they said "normal findings" but that was absolutley not the case.
Appointment came around, I was borderline for the Grabb-Oakes score for CCI but I was supine, which told us nothing and the only other was of truely knowing was a shitty upright MRI in Melbourne, Australia, otherwise I would have to be US bound to get the right imagining done. That was not what he wanted to talk to me about though, it was the other two things that were incidental findings. My Empty Cella Syndrome (which turned out to be partial) and possible Internal Jugular Vein Compression and my possible CSF leak. WHAT?
He sent me for more scans, another nearly two hours in an MRI machine, again having to take all my piercings out. I also had a CT Venogram.
I waited about a month for the follow-up appointment. Waited on Zoom for about 2 hours and the call lasted about 10 minutes. He wanted to take my case to an MDT with two colleagues, one is an Intervential Radiologist, the other an ENT surgeon doing some of the only Jugular Vein surgery in Australia.
Two MDT meetings and nearly 4 Zoom appointments later I had a plan for surgery. It is a really good support letter and hope it will be enough to help me secure the funding. I have Meningeal diverticulum in all three areas of my spine (Cervical, Thoracic and Lumbar). 3 largest in my Thoracic are potentially leaking, causing cyclic pressure issues, compounded by Bilateral Severe Internal Jugular Vein compression. Problem is no-one here agrees! This month I go for for a 3rd NZ opinion, this time its a recommended surgeon by my GP. Even before seeing me he wants to do an ICP procedure to confirm my intermittent IIH / CSF leaks / ICPressure. This is invasive and not recommended by my Australian Surgeon. I cannot get to Sydney for surgery unless someone backs me for the HCTP. What to do??
I will hopefully have another whole post to explain the above after the next appointment. I don't REALLY want to be booked into ICU for a week and be awake while someone drills a whole in my skull, but if needs must? To ensure I have a better quality of life and live until my 60's dementia free, I will do anything at this point.
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