Bengt needs a brain scan abroad.

I need a upright MRI scan for Chiari malformation to apply for treatment.   Hi, I'm a Swedish/American, 53 year old guy living with hEDS or Hypermobility Ehlers-Danlos Syndrome . Sweden has recently sold out their upright MRI's. So many of us with EDS here are now looking towards the UK for diagnosis for Chiari Malformation  which is one of the many comorbidities to EDS. Why upright MRI?  Because often cases are missed without the effect of gravity on the brain.  So ok, where should I start?  I have been suffering from neck pains for most of my life, or as far as I can remember anyway. I also had pain and other joint problems early in life and was very bendy at gymnastics in school. Today when I'm 53 thing's have escalated in the last 15 years, to the point of being unable to work and on our equivalent of disability benefit's until the age of pension. My diagnosis....  I was assessed and diagnosed with hEDS five years ago by one of our best specialist's in EDS and neurologist, Anders Östberg at Gotahälsan in Mjölby. But the knowledge and interest about EDS (or any other "rare" ailments)  by the rest of  our national healthcare  is extremely low.  I'd call it knowledge resistance to be honest.... Hence selling out equipment vital for diagnosis.... They don't want to know. Nor do they want us to know....  Right, to my neck....  I'm a bobble head. My neck is hypermobile and unstable which causes a constant what I call "base pain"  deep inside where the skull meets the vertebrae. And weekly flares that spreads from within the first vertebrae area, up towards the eyes and I partially loose eyesight. It also darts down my neck into my shoulders. It's a debilitating pain that can not be cut by morphine patches nor any additional medication I've tried so far. Those days are spent in bed,  head propped up with a Aspen Vista neck brace and a pile of pillows. I can also cross many of the diagnostic boxes of the neurological effects of Chiari I. I got the tip about a clinic in Kensington from a swedish EDS support group. And as it happens, I will be cat sitting in London from the 24th of April to the 8th of May. I realise this is very short notice. But I thought I'd take a chance to see if I can have a neck scan for Chiari I done while I'm in town. I only need help with the scan which is £1395. Tickets, room and board are already sorted.  Why...?  Because after diagnosis,  I can apply for treatment and perhaps surgery in Sweden. Also, I value the personal understanding of what exactly is going on inside my neck. Which can perhaps lead to finding other survival tricks from my fellow Zebra's. I have been in contact with Medserena Upright MRI Centre  in Kensington and here is what they are offering me for my specific symptoms: "Dear Mr Brown, Thank you for contacting us with your enquiry. Based on the clinical history you have provided for us, we would recommend our package that consists of the following:  An Upright sitting MRI scan of the Craniocervical Junction including views Rotating the head to the Left and to the Right, which allows us to assess for any ligament damage/laxity of your ligamentous complex and any subluxation/ dislocation of your Atlas. An Upright sitting MRI scan of the Cervical Spine including views in Flexion and Extension, which will show any Chiari malformation/tonsillar ectopia and also the stability/instability of your cervical Spine You will leave with a CD containing all your MRI images. A findings Report prepared by Professor Francis Smith will follow in 3-4 days via e-mail. The fee for the above Package 1 is £1395  The 1½ hour appointment slot can be accommodated given 4-5 days’ notice and at the moment we have very good availabilities between 24th April to 4th May." Thank you for reading this far. And thank you, thank you if you choose to donate to my cause!  /Bengt

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  • tim eborn 
    • kr200 
    • 36 mos
  • Paul Cooke 
    • kr200 
    • 36 mos
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    • kr600 
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    • kr400 
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Organizer

Bengt Brown 
Organizer
Boxholm, E, Sweden
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