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New & pretty sure EDS puzzle pieces may be fitting together
I am a 46 yr old female, my story is long, as most of yours are and I know I have only just begun. I hope you will read it in spite of it length and help guide me a bit, if you have any helpful information or advice I would so greatly appreciate any help I can get. I am a mother of 5 adult children, one still as home just getting ready to graduate. My husband is a pastor of a small church. I wish we had the money to send me to private medical care but that is not possible so I will wait patiently for the Lords help to guide me in the use of the means of research and maybe a bit of guidance from you who have already gone down this path. Thank you in advance for those who will go on to read and offer help.
I live in Canada and at times the socialized medical system can run in fits and spurts and can be frustrating at best, but especially when you don’t feel well and want answers in a timely manner, unless your family doctor can handle the issue or it is a life threatening emergency. I now have to wait 7 months to see a rheumatologist at the end of Sept. I don’t know if this person is good or not, he is the one I have been referred to. I have been told he is good. We will see. Some of the specialist like a geneticist can have up to and over a year wait list. Get ready its coming your way, in the good ole USA. So, I say I am in the process of finding out if I do have Ehlers Danlos Syndrome, but may not have any real concrete answers for a while. In the mean time I am trying to gather as much information as I can and by any means I can, like get my family medical history together, my medical history, research and try and help myself the best I can. I have had some CT scan and MRI but I will share that as I go.
Here is what has happened this year and what I do know that has led me to consider EDS as a possible diagnosis. This last year has been a tough year. I know that some of my issues pre-dated what has transpired this year but a large majority of it has kind of come to a “head”, so to speak this year. I will tell you more of earlier issues later.
I have been having too many things all happening, around the same time in the past year to be a coincidence. My symptoms started last March 2012 with asthma type breathing issues, burning irritation in the top of my lungs, chronic hoarse voice, and headaches that the frequency just kept increasing. I had something sticking in the back of my throat, so through my research I found a condition called Eagles syndrome and alot of the symptoms have seemed to match. I have now been diagnosed with bilateral, Eagles Syndrome (ES) with 4cm elongated left styloid and 3.8 right styloid. I think the right side is compressing the jugular. The doctors up to this point still don’t think the compressing of the right jugular is a big issue. My referring ENT, who has been great, works out of a small hospital and would do the surgery but the hospital is ill-equipped for this complicated of a surgery. So they have been screening ENT surgeons for me (8-10 so far) trying to find someone who know about Eagle’s Syndrome(ES) and will consult on my case for the surgery. My symptoms just keep compounding over the year and this has been very difficult. Here are my symptoms: a few of them are transient and are not there 100% of the time but have happened more than enough of the times to make it on my list. I have seen a Neurologist for the headaches, who was next to useless, but I did get some scans out of the deal. The radiologist have picked up on a few things that the doctors have kind of not made a big deal out of but in my research this is where I feel where my ES may have crossed over to EDS; so I recently brought it up to my family doctor and ENT doctor and now I am on the path to find out if EDS is the bigger umbrella I am sitting under.
Continue on next post for symptoms.Prior to all this I had been going to the gym 3-4 time a week , eating healthy, normal weight for my 5’ 3” frame. I had Migraines a few times a month then all of a sudden I started waking up with Mild to medium headaches most every morning, and I was getting Migraines 3-4 times a week. Then the symptoms just kept compounding and getting worse over the next while Throbbing Headache in base of skull and neck and eye area, Pain up the back of neck and face throb, even vision bounces, after I take all the medication, I still feel it as if it is in the background just not as strong, like the volume has been turned down but the headache is still there. neck ache most days, Up the back of my neck around the side, Base of skull to ears into my palate area, Pinch nerves in neck, Leaving head in flexed, down or rear position for too long gives me a head ache. What feels like Nerve pain running down my neck shoulders and left arm to elbow, little and ring finger, numbness in fingers, tingling, and achiness occasionally swelling. A little on the right side too, but not as much.
Frequent sleep interruptions with neck discomfort, Sore bruised throat, especially when I first wake, Excessive mucus in throat after eating that causes coughing and throat clearing, chronic Voice hoarseness, shooting pains to ear, left side of bottom jaw and lip can feel numb and pins and needles, Throbbing jaw, neck, face, palate, nose and eyes, vision throbs, but with no pain, Occasionally Pressure in throat that makes me want to cough, hot burning feeling base of inner ears, hear ringing/ buzzing/ blood rushing in ears , after a stretching, with arms up, short episode of dizziness, vertigo, seeing stars, vision dimming and tinnitus , pressure and ache in neck, face and jaw when bending over, Irregular heartbeat, hard pounding, sometime fast fluttering feeling, Occasional Vertigo, Room spinning, nystagmus, LPR Acid Reflux, ,Burning lungs, Asthma like symptoms, Difficult starting to swallow at times, I have to think about swallowing and getting food to go down at times, frequent choking food and liquids, or get in sinus, I have aspirated food and liquids, Feels like something is protruding in right side of throat, food will sometimes get stuck in back of throat, Pain during opening my mouth wide, yawning, frequent throat clearing, Cough, especially after meal, dizziness and light headed when standing ,Occasional Blurry/ slight double vision especially after looking down for short periods, frequent Pinch nerves in neck, stiff neck, Shooting eye pain to top inside corner of left eye, Heaviness one the left eye It seems more closed transient unequal pupils, Turning and flexing my head and neck, I have limited range of motion in neck. I tend to turn from shoulders and waist. I have adapted and done this for years because of stiff neck, pinched nerves, tension.
I have a feeling of something catching on or behind something else in throat/neck. This has been going on for 18 years, I get a painful spasm in my throat when this happens. I don’t know if my styloids or the hyoid bone dislocating or catching on the thyroid cartilage is hitting on a nerve or actually getting caught behind something like my hyoid bone or thyroid cartilage, Nerve, artery, vein, tendon? Usually happens during yawning, stretching, and turning head. I have to suppress yawns or I only do a half yawn. If I yawn, and stretch with my head at any kind of angle it can happen. But I get it at times just turning my head too. It causes extreme pain. Sever burning pain in neck and causes throat to spasm, from ear to thyroid area. This burning spasm increases the longer it goes on. My ear feels like it is on fire, it is very difficult to swallow and burns and aches. It hurts to move tongue during this time, hurts in back of throat just under tongue area, I avoid talking as this makes pain worse. It feels like my throat is closing. I have to calm myself and not panic. I have to locate the area that feels caught and manipulate my tracheae/neck/throat, by pushing, and pulling until I hear an audible “pop” sound, that is the sign that the releasing of whatever was “caught” and the pain subsides and everything is a bit sore/bruised, but relatively back to normal. It can happen on left or right side, it has never happened on both sides at the same time. The right side is typically worse though when it does happen. The left side has been more frequently lately.
My GP has me on “Tecta” PPI for Silent LPR, this has helped the burning in my lungs as this was the only sign I had that I was having any reflux. I had never had asthma before so it was weird to have lung issues all of a sudden. I am going to an internist in the beginning of April for a consult on an upper GI to make sure there is no damage. But now that I know about the possibilities of GERD in EDS this is a good thing. I may ask if I can get a lower GI too because bowel issues run in my family. My family and extended families medical history has too many things that fit with EDS, I may have stumbled on and found the common denominator in all our issues.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.The aortic aneurysm and trying to fit that into the big picture is when Google threw Ehlers Danlos Syndrome out and I came across Dr. Dianna Driscoll’s information. Trying to connect all these crazy dots, I did not need another syndrome at the time, but I figured I had to check it out. It was kind of scary, not just reading how my own issue may fit but for my kids too and my mom and her family medical history as well. There is still alot I don’t know and the learning curve is huge and I guess I could still be wrong, but I have got to see this through.
I know that I have small loose joints, all fingers hyper extend, both Thumbs touch wrist, both pinkies more than 90%, all tips of fingers can flex , my wrist fold more than 90% forward but back. I tend to break blood vessel in hands and fingers easy. Loose skin back of hands, elbows, My elbows and knees do not hyper extend they seem fine but they do get stuck and pop, my feet are flat and pronated, I have lax ankles and they can collapse sideways at times, but not sprain, I do bruise easy and feel it deep, , Bunions on both big toes, My hips are very rotatable and pop easily when I cross my ankles I can pop them, I can touch my toes to my forehead with ease. I used to be in gymnastics as a child and on the gymnastics team in high school mostly floor stuff, not a star athlete but I enjoyed it. I had no major injuries. I can touch my tongue to tip of nose (Gorlin sign), Flip eye lids inside out (Metenier sign), I have Waxy bumps on my chin and cheek I believe they are called Syringoma , very thin loose skin under eyes.
I have had 5 children all to term, all vaginal deliveries, 3 years ago had Prolapsed uterus/ prolapsed bladder/ prolapsed bladder. I had a Hysterectomy for the uterus, lift for the bladder and urethra. I have rectal levator ani spasms before the hysterectomy and still have them. I read that this can be part of pelvic congestion and may be part of “nutcracker Syndrome” I have always had very painful ovulation and wonder if pelvic congestion is part of all this. I have also read that it may play a part in migraine headaches and ccsvi? Anyone have any knowledge about this?
I have transient blurred vision and slight double vision at times, Eye floater. I have made an appointment with my Optometrists for next week. I have never had to wear glasses. I do wear age related reading glasses. I have big questions about my son though. My mom has keratoconus, my son has keratoconus and had it bad enough to warrant corneal crosslinking and intacs last May 2012. My other son at age 19 had surgery on both elbows last year for Osteochondritis dissecans, this is something pitchers might get in one elbow, but to get it in both is very rare and he is not a pitcher. He does lift weight though. My second born daughter has a rare condition they think is called Hashimoto’s Encephalopathy, and she is on IV steroids and IVIG she also may have a celiac issues but the biopsy came back negative. All my kids have flat feet. I could keep going about the issues of my kids but this probilby enough and it’s is getting depressing. I think I have given enough information as to why I need to rule out EDS type 5 or get a diagnosis of the type we might have and find out if this is the umbrella we are sitting under and see if we can find new help for some of our issues.
My Mom’s side of the family is where I believe this all came from. I know at least three females in my grandmothers family, her Sister, aunt and nice have died of brain aneurysm. My mom has always had a weak constitution. Her medical conditions are more than I want to list, she is obese, and has diabetes so I don’t know what things are related to those issues so I tried to get medical history before she was heavy. Prolepses, multiple hernias, carpel tunnel……..I dont know what tomorrow holds but I know that what ever God has in store for me and my family, He also will give me the daily grace to bare up under it. Thank you for your time and any helpful infomation you might offer.
Rebecca (mommabutler)
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