Hey there, my name is Luke and i was diagnosed with hEDS some months ago. I was hoping some of you here might be able to give me some opinions on some MRI’s i had taken a few months ago?
To start off i’m not looking for a diagnosis over the internet or anything, but i was hoping some people around here may be able to offer me some independent insights!
I had an MRI some time ago at the request of my Endocrinologist who i am under for my Chronic Fatigue. I mentioned that i also have a non 24 hour sleeping disorder and that it is very rare for non blind people. Apparently at least in one case i had read the disorder was caused by an adenoma and so he decided to do an MRI to check for any brain abnormalities.
The letter i got back from the MRI department said that my brain ‘looks normal in its entirety’, so yay, no tumours. However since being diagnosed with hEDS and becoming more aware of the various symptoms that go along with it i have been discovering more and more odd things about myself that seem to point to a related or concurrent problem(s), though what exactly i dont know.
I have some odd problems with swallowing, i have trouble controlling my temperature, get bad night sweats, i have a fast heart rate on standing (from 66 to 115bpm within 10 seconds in one case i measured), odd bowel problems and also have periods where i wake up with a bad pressure type headache right at the back of my head at the base of my skull, which gets worse when coughing or tipping my head forward, although these are sporadic and not constant (these headaches seem to ease off if i tip my head upside down weirdly). Also occasional pain behind my eyes. My neck also crunches and loudly pops almost all the time and sometimes seems to ‘seize up’ almost as if it has all settled and glued itself together. It doesn’t always feel properly attached either, if i move my head around too quickly it kinda feels like its going to snap off, and my brain kinda feels like it sloshes around inside my skull.
I attempted to do Rombergs test on myself (standing with eyes closed, feet together and walking heel toe) and found that my balance goes way off, i attempted to test for Hoffmans sign, though this is a bit difficult to do on yourself accurately… i did get some sporadic involuntary index finger twitching. Also self testing patella tendon reflexes there occasionally seemed to be what looked like a bit of hyperreflexia.
Now i know many of these things can have lots of other explanations in the context of EDS and related disorders, but something in my gut has been telling me to look into a possible neurological relation.
I got copies of the MRI i had done in December and although it was to check the pituitary and other parts of the brain shows plenty of other things too. One thing immediately jumped out at me from all of the things about CCI and other brain/spine issues i have read over the past months.
As far as my untrained eye is able to tell i have a very noticeable kink in my spinal cord/brainstem and a much less than normal clivo-axial angle. These MRI’s were taken lying down and i would say that my head was ever so slightly tipped backwards, definitely not in flexion. At first it didnt look as though there was any basilar invagination but i was only looking at McRae’s line, someone on another forum pointed out that my odontoid does go up past Chamberlains line, which apparently is a different type of basilar invagination.
I could not see any obvious Chiari malformation, although there is a ‘blobby’ bit hanging down slightly i do not know enough to know whether this is within normal parameters. Other people have suggested a problem with CSF flow. Obviously for this an upright MRI is recommended, but these are few and far between in the UK, and the nearest one to me is private, not NHS (although they take NHS patients, if you can convince your GP to convince the NHS to pay for it, since it is a specialised test).
I have attached several slides from the MRI below; any insights from your personal experiences or MRI results you guys have had would be very much appreciated! It is certainly something i am going to mention next time i see the doctor.