All this information is before I knew anything about Ehlers Danlos Syndrome and of its symptoms or associated issues.
My ENT did send me for a CT scan and the radiologist said my styloids were normal Bilaterally, I was so irritated and crushed as I knew something was wrong with me and how could it not show up. It was then that I asked him, my ENT, to feel in my throat and tell me if the anatomy at the back of my throat was normal, then he apologized for not feeling in there sooner and said it was not normal. He then sent me for a CT angiogram which showed them more clearly. The radiology report still reported them normal but longer than 3cm. I made sure to get hard cd copies of all my scans for my records. At this point I began to research and learning more about Vascular Eagles Syndrome and glossopharyngeal neuralgia and vegus nerve irritation. My referring ENT is looking for an ENT surgeon to remove them. He has pre screen about 10 and no one does the surgery.
My GP had me on “Zomig” for my migraines as needed but that stuff is nearly $8-9 a pill so I only us it when I am absolutely miserable. I can’t take “Opiates” as they make me sick and give me incredible stomach pain, So he started me on a “Toradol” as needed, but then that still was not really helping. I really don’t want to be on lots of medications so I have resisted a bit. I would rather get to the bottom of what is going on first and fix the problem rather than have a bunch of Band-Aid medication that have a lot of side effect you need mor medication to fix. He promised we would figure it out what is going on so I took the medication. He put me on a migraine prophylactic “Nadalol” It helped a bit with the headache and the irregular heartbeat but made be fell lethargic and has given me so many horrible side effects. I am currently weaning off of it after being on it for 5 months. It was not until they tried to increase the dose that is when things really got bad. Asthma symptoms came back, chest pain, Body aches, hot joints, depression, cold all the time, pain numbness and tingling increased, difficulty thinking, basically all the bad side effects ,I had them. I lost 9lbs. My GP has done a halter monitor in the past for the irregular heart beat but said I would not have to worry about it until I am older but it has been really been bothering me a lot more lately.
My GP sent me to a Neurologist who is a headache specialist who was not really as helpful as I would hoped he would have been, he did not think my symptoms’ were related to Eagles Syndrome but did not offer up much else other than medication. He did do an CT angiogram and MRI of my brain as I told him at that time that my headaches were in myfront of my face,top of head and brainstem. I told him I had been dealing with this now for over 11 months, with no real relief and just wanted help. He was not a man I really would want to see on a regular basis as he was dismissive about everything and said follow up with your family doctor. Here is the point at which I started doing research because of what was found on the scans.
“MRI Findings: No discrete lesion identified in the brain stem. There are multiple high signal intensity foci in the periventricular and subcortical white matter especially in the frontal lobes. A few high signalintensity foci are seen in the juxtacortical white mater and in the centrum semiovale. The high intensity foci may be associated with migraine. White matter demyelination disease is in the differential and requires clinical correlation. No obvious lesion identified in the corpus callosum or cerebellum. No significant mass effect, midline deviation or extra-axial collection seen. The ventricles and sulce appear within normal limits for age.”
“CT Angiogram of head and neck Finding: There is a slight prominence noted of the proximal aspect of the decending thorasis aorta which measures about 2.4cm Evaluation of ths region is limited and only the proximal aspect of the aorts is included in the scan plane and a ct of the chest is advised.”
Everything else was normal except the “Thyroid glands show slightly inhomogeneous contrast enhancement. This could be from small Cysts or nodules with the gland. The thyroid is not enlarged.”” The styloid process is elongated bilaterally and measures 4cm on the left and 3.8 on the right the tip of the styloid process is seen in close relation to the carotid sheath ant the level of the oropharynx, if the patient’s clinical symptoms correlate, this appearance could be related to Eagles syndrome.” Finally most doctors only read radiology reports. This has been a problem.
“CT Thoracic angiogram Findings: There is a fusiform aneurysm of the upper descending aorta with a maximum ap diameter of 2.9cm and transverse diameter of 2.8 cm. the diameter of the aortic arch proximal it the aneurysm measures 2cm. in diameter. The aneurysm is approximately 2.2cm in length. The remaining thoracic aorta is unremarkable.” I also have a 1cm liver cyst.
Everything according to the report looks fine. The scan cuts across the kidney and they did not mention something else I found that I wonder now if I should bring up to my doctor. From my research I think it is called “Nutcracker syndrome” I included a picture from the scan.