- This topic has 3 replies, 2 voices, and was last updated 4 years ago by .
- You must be logged in to reply to this topic.
Are there any specialists in the UK who are familiar with the Driscoll Theory? I have diagnoses which include a hereditary disorder of connective tissue/hypermobility syndrome, POTS-like dysautonomia, GI involvement, musculoskeletal & neuropathic pain plus several other symptoms. I am suspicious of possible vagal nerve involvement and ICP issues having found this website. I would be very interested to know if there are any links with UK consultants or specialists.
I don’t think there are, well at least I haven’t found one yet (please let us all know if you find one!). You just have to find a consultant who could possibly diagnose the raised intra-cranial pressure based on one of the medical signs, such as a Neuro-opthalmologist who might find a swollen optic disc – though remember you can have raised ICP without this sign. I was lucky and this sign was visible (though it wasn’t blatant) but I was able to obtain Diamox. I only needed a small dose and it made such a difference.
Just an afterthought – whoever you see, don’t let them use any invasive methods to test for raised ICP, as it can worsen your situation, especially if you have low-lying cerebellar tonsils on your mid-sagittal MRI, see
The low-lying cerebellar tonsils can actually act as a ‘bung’, giving a false negative result (when your pressure above the ‘bung’ could be raging!)
There is another sign of raised ICP sometimes seen on MRI’s but, it’s usually when the pressure is very high and that is, flattening of the back of the eye itself. My advice is, ask whoever is assessing you, to look for subtle signs because these are often overlooked and we are subsequently left to fend for ourselves.
Hi there ! Dr Mathias in London imperial college I think is the best person to see re autonomic disorders.Your Gp can refer you even if not living in the London area
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross