February 17, 2016 at 10:20 pm #969
Is anyone good at reading MRIs? Barb? Do you see anything? Does this look like an aneurysm at the back of my head? Also, I am having trouble with my sinuses and I believe it is related to cerebrospinal flow somehow. Does anybody see anything? Thank you for your help. All ideas are welcome.
MJFebruary 18, 2016 at 8:23 pm #5867
Sorry but aneurisms aren’t my area of expertise, nor are CT scans unfortunately, which highlight the bone really. Also, the contrast between the different soft tissue elements on a CT scan, is not as keen as it is on an MRI scan. What was the purpose of your scan ? Did you have an injection ?
Did you ever get an answer for the cause of your prominent veins because mine are starting to display a swollen appearance – not as marked as yours were though but, never-the-less more noticeable than previously.
(UK)February 18, 2016 at 9:36 pm #5870
Hi Barbara. Thanks for replying.
The purpose of the CT Angio stemmed from a vascular spasm that was noted in my right subclavian artery during ultrasound testing. So the focus was on my shoulder. They found a kink in the subclavian artery and possibly some pressure on it from an extra cervical rib. I did an injection but it was timed for the shoulder.
I am actually not sure if these images are CT or MRI-I didn’t label it when I transferred it to my iPad. I thought it was the CT Angio, but it could be my MRI – I don’t know how to tell the difference.
My prominent veins are more so than before as well. The vascular team dealing with the kinked artery referred me to a specialist because they felt I have systemic vasculitis. Still waiting for that appointment a year later as well as an appointment re-dermatomyositis diagnosis. I am positive too that I have erythromelalgia in my hands and feet. It is getting worse and keeps me up at night. the erythromelalgia is activated/coincides with the prominent veins. They are related.
In addition to the kinked artery, I have many visibly tortuous veins. I am convinced that I have vascular EDS, my geneticist has me diagnosed with classical, but also said that we can’t rule out vascular 100%. She said she would reconsider the vascular EDS diagnosis if I had any tortuosity’s in the CT Angio, which I did. I have not met with her yet though.
Does your blood pressure go up with your pots? Mine does and I feel this has something to do with the prominent veins.
Start with vasculitis for the prominent veins. If I get diagnosed with anything I will be sure to let you know.
Thanks BarbaraFebruary 20, 2016 at 5:08 pm #5881
I’d be contacting the hospital again to see what the delay was with the appointment, having to wait a year is outrageous. Yes, if I stand up for any length of time, my blood pressure goes up (and up!)February 20, 2016 at 11:39 pm #5883
Been waiting since December 9, 2014 for that referral. I followed up three times within the first six months and then got really frustrated and now it is been well over year. Dermatomyositis and systemic vasculitis are definitely two things that should be diagnosed quickly-I am not impressed.
Thank you for the push Barbara- I will follow up AGAIN. I wish you all the best Barbara-I know you have a lot going on. Have you tried craniosacral therapy? I dramatically improved. I would say I feel 70% better since receiving craniosacral therapy on a weekly basis. This is proof to me that I have intercranial pressure issues. I also have some weird sinus issues related to the intracranial pressure. And this could be related to the type of systemic vasculitis that I may have. I know it sounds crazy, but if I push on one of my swollen sinuses my neck pain (back of neck) and the pressure in my head subside and my shallow breathing returns to normal deep breaths.
MJFebruary 21, 2016 at 12:37 pm #5885
I felt so fragile at the cranio-cervical junction for many years after my accident, I just DAREN’T let anyone near me to manipulate anything but I have, throughout the whole of my life, tried to keep my posture nice and upright. It was just so difficult, to get my head properly ‘up’ after my accident.
Well, to start off, nothing surprises me about this whole condition, as much of it doesn’t fit within well-known medical boundaries.
This sinus thing is interesting, whereabouts exactly do you push, a rough drawing might be useful ? I don’t suffer with sinus issues so I’m ignorant of these things but it might hold a clue if you show exactly where you press. Do you shift your head position in relation to your neck when you carry out this exercise ?
I believe the shallow breathing, indeed the general dulled response to breathe, is due to subtle brainstem compression.February 22, 2016 at 9:10 pm #5891
I have to move out for four weeks while my house is under renovations-I am trying to pack up some boxes and load up the car but of course it’s killing my neck and I’m exhausted. Anyway Barb, I didn’t want to rush my response to you, so I will reply as soon as I can. I will be without Wi-Fi while staying at a friends house, but I will try to get back to you as soon as I can get to wi-Fi.
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