Hey all,
So I had my appt with Allison Love (Dr. Hepworth’s nurse practitioner) last week - and I was so blown away! She basically confirmed everything that I had researched and that you guys had said, and was able to get me in for a CTA within 2 days there in Denver (she wanted to do it local so that they used the proper protocols). She spent a lot of time with me, never dismissed anything that I said, and listened to the whole story. My appointment with Dr. Hep will be in May, and we will discuss surgery at that time - I will most likely have the left one out first since it seems to be the worst problem child. (I have a 75% compression of the left jugular and a 50% of the right). She also believes I DO have an active CSF leak (the first doctor that believed me), and we will address that if it continues to cause problems after removing the styloids.
Thank you guys SOOOOO much (@Isaiah_40_31 ) for recommending Dr. Hep - I sort of sat there and cried in the office which was all sorts of embarrassing. I feel like this has saved my life, and it was so worth the drive and wait for the appointment. For the first time in this whole journey I feel relaxed, like I didn’t have to fight and that the doctor’s “got this”.
One other thing that did come out of this has kind of shaken me a bit - she said that the only time she had seen a neck like mine was in someone with a connective tissue disease - specifically ehlers-danlos. She believes a big part of my problem is cranio-cervical instability and that my C1 keeps moving forward pushing even more against the elongated styloids. I have done some research and believe that I have either hypermobile EDS or am somewhere on the HSD spectrum.
I am able to bend over and put my hands flat on the floor at age 50 (with no warm up), both elbows and knees hyperextend, I have had 4 broken arms, multiple sprains, torn both rotator cuffs, had 3 knee surgeries, shattered my ankle, and dislocated my elbow. I have piezogenic papules on both heels, an arm span to height ratio of 1.05, and low blood pressure…that’s just to name a few. I have Band-Aids with me wherever I go because I always seem to be bleeding, I bruise very easily and I have atrophic scarring in multiple places. I never even thought about it being part of the problem - I just thought it was cool that I was so flexible and I was always the contortionist when I was a kid.
The realization hit me, however, that removing the styloids would alleviate the ICH and a lot of problems that I have been having lately - but the real source of the problem may be EDS. And then there’s the fact that it’s genetic…I am 90% certain that my youngest daughter has it as well. I am searching for a doctor here locally that is knowledgeable about EDS/HSD and will go from there. If anyone has any suggestions on how to pursue this I would love to have your opinion.
I’ve sort of opened up a can of worms, about 1/2 of my family have similar symptoms and it’s prevalent in multiple generations. I believe that my ridiculous amounts of high-risk physical activity over the years has caused a higher degree of injuries and problems than others in my family, which has triggered the CCI, which has triggered the vascular problems and jugular compression. Again, the rabbit hole just keeps getting deeper…
Anyway, thanks again to everyone who pointed me in the right direction, I owe you so much!
& praying 
for steady forward progress in achieving recovery.
