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)