TheIcelandicPrincessNewNeck2022

  As you may recall I tried to get to see a doc in MD (Alyssa Zingman) who was featured in the WA Post, but she was so busy I could not get in (this was about 2 years ago I think) Subsequently she had hired new physicians and therapists for her practice and greatly expanded it. I had a tele-visit with Alana Wright for about 2 hours. She went thru all of my therapies and current meds and treatments and symptoms.  She does feel I may have tethered cord syndrome which would make sense given my symptoms and the history of the Chiari 1.   Also I need a sleep study and a ferritin and CBC drawn.  I see my primary care doc tomorrow and will get these things ordered. I already have a ton of films, Cat scan, and MRI but I need a prone MRI also.  I would just love to sleep. I am waking up 5x a night with electric zaps going down my legs and then up to the BR.  So I am hoping we can get that resolved so I can get a good nights’ sleep. I am swallowing better! That has b...

 

I was a bit scared when the Cat scan showed not so much bone laid down and some erosions of bone but apparently this is due to me being OLD and also due to osteoporosis.  I will be getting meds for that (Injectable due to my swallowing).    I feel less scared now but it does make sense right?   Also the neurosurgeon PA ordered a ton of imaging for my sacral area plus an epidural. Because I do need an epidural for my normal problems there. But also they must check the Tarloff cysts which are common in EDS. In any case!!! We have a plan and I am so glad to know I am still on a lengthy healing process and not infected or something like that.   I still do not have a photo of my cat scan bc we have Apple products and they DO not open w apple products so when I can hook up to a PC I will upload one. Happy Holidays to everyone! To a wonderful 2023! (And end to the war in Ukraine may I add!)

   Note the dark brown hair growing in from the area that was shaved! Very weird!  There are so many things I can do now that I could not do a miserable year ago watching the ice storms roar in our hotel by the freeway in Maryland! I can walk a mile however lately my lower back disc issues have been a problem so I have been using a cane temporarily; but the cane irritates the nerves in my left hand up to my neck so that I have to gauge how long to use it. We took a trip up to Mendocino for an overnight there by the water and it was over 2 hrs and 3 hrs in the car so that was awesome! The vibrations used to be too hard after 45 minutes or less.  So looks like I can take car trips!  I will be careful and get out and move etc but this is liberating!  I have struggled with some pain in my left arm and numbness and nerve pain in my right leg and foot. So I am back up to the double tramadol, I really would love to feel like I could go back to previous level of ac...