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Thanks Barbara,
I did my Grabb-Oaks measurement and depending on the image i’m getting between 11-14mm, which according to my research it should be less than 9mm. I also calculated my Clivo-axial angle at 136 degree’s. Now if I could just get a doctor to agree that I have CCI.
Ruby,
I am by no means an expert on all of this,but I do recall reading several articles about chronic lung issues being connected to EDS. They caught my attention because my son has had issues with his lungs since he was a baby. I do apologize that I can’t find the particular article,but I did find this website. http://www.ehlers-danlos.org/about-eds/medical-information/lungs-and-eds/
I hope this helps some and wishing you the best of luck in you journey!
Barbara,
I can’t say that I have encountered anything quite like your description. What part of the body are they showing up on? If it is on a hard surface such as the soles of your feet or palms, it kind of sounds like a type of wart. I have seen these in many presentations. Pictures would always help 🙂
Jess
Dr. Diana,
He actually yelled at me. It was quite shocking, I had to ask him to leave the room until he could calm down and talk to me with respect. He came back with my prior notes and said that if I was still symptomatic on the therapeutic dose of topamax he would put me back on diamox. He also is referring me for automatic dysfunction testing. He really didn’t want to do this, but since the only thing he was willing to diagnosis me with was a headache. I can’t seem to get the doctors to focus on anything other than the headache. They disregard all of the other symptoms. I am trying to think of a tactful way to email my neurologist your book now and ask him to please read it and be open that EDS does have something to do with all of this. Sorry for sounding like a soapbox, but so very thankful for this.
Dr. Diana,
My Doctor did not elaborate on the specifics of the “sinus disease” just that it was there. This was the original report:
BRAIN MRI:The gyri and sulci are normal with preservation of gray white matter differentiation. There is no acute ischemia, hemorrhage, or mass lesion. There are no significant foci of increased or decreased signal. The ventricles and extra-axial spaces are normal. Normal flow-voids are seen at the skull base. Internal auditory canal structures are normal. There is mucosal thickening in the left frontal and maxillary sinuses with an air-fluid level in the left maxillary sinus. The mastoid air cells are well aerated.
BRAIN MRV:
The superior and inferior sagittal sinuses, transverse sinuses, straight sinus and sigmoid sinuses are patent without evidence of filling defect. The smaller caliber sinuses and occipital sinus or suboptimally evaluated. IMPRESSION: Normal noncontrast MRI of the Brain. Normal MR venogram submitted of the brain.
It was then amended to state:
Amended Report: There is inflammatory sinus disease.Most labs have been normal except I have low levels of Magnesium and Phosphate and a high platelet count. Also I came back positive for Rocky Mountain Spotted Fever although I have never had any symptoms for this particular tick borne illness.
I am beyond baffled now. I was convinced that I was suffering from high intracranial pressure. Being in the military makes it very frustrating since the majority of our patient population is health and no one has heard of any of my conditions.
Many Thanks for you response I am a huge supporter of your work and I know that it will change medicine as we know it!
