TheIcelandicPrincessNewNeck2022

WELL! Here is an update of the NEWS from the Icelandic Princess.  My neck is healing (almost to 2 years now) and still of course some face and head pain from the remaining disc issues.  My lumbosacral spine, being jealous of all the attention given to my UPPER spine, cerebellum, and neck, decided to rear its green head by pointing out that the 20 years of epidurals were NOT what it wanted. Therefore the epidurals stopped working and so made it abundantly clear by my butt and leg pain and neurogenic claudication that it needed attention.  Due to my ongoing osteoporosis treatment my bones are getting very badass—but not yet perfect for fusion— and therefore we are trying a procedure that could work for years.   This is going to be done in Marin (UCSF/Marinhealth merged) and should offer some relief.  UCSF neurosurgeon is ready to do the full levels of fusions if necessary but this will be what we hope is a good step in the right direction.   The Vertiflex pro...

  It is amazing what this year has been like.  So much healing, adjusting, many new medical issues to confront….but at one year after almost draining the Medicare federal funds! I feel like perhaps I have new life ahead of me! (Lucky for ME and due to having had the surgery). I discovered also that my obstructive and central sleep apnea is pretty severe (check this EDS ppl with the surgery and then a smaller pharyngeal area) and that has been a big issue.  Bipap has dealt with that at least on the first level until further testing.  From an emotional standpoint I am relieved I can wait for the lumbar sacral surgery and any further cervical surgery at this point. Likely L/S first and get that stabilized then see how things go.  I will soon be taking some osteoporosis meds and that should help things heal in my cervical region also.  I am truly fortunate to be alive at this point in my life with EDS! I would like a nice vacation from all of this to be quite h...

YIPPPEEEEE!! NO Surgery at this time on lower back! We can wait and see how things go with the Feb 3rd epidural on L5, S1.  I also had an EMG which showed that I do have mild damage on the R. Leg calf as well as the back of my thigh.  However it is still mild.  The paresthesias are not going away but that could be small fiber neuropathy.   Dr. Naidu does a great epidural.  Dr. Arora listens well and also he did say if things return we will have to take some pressure off of S1-2-L5 (he did not specify).   For my neck structure to become calcified he recommends one of 3 possible drugs:  Forteo, Tymlos, or Evinity.  They build the bone.  None other than those 3 possibilities.   At this point now, I continue to do PT for strengthening the core, I can walk easily for a mile + and also have completed the pelvic floor PT.    Now to complete the sleep apnea test again and get that figured out! My neck and esophagus are very tiny. I’m s...

  Hi there.  Yessireee it has been 10 months! And honestly I am SO MUCH BETTER w the head pain and pressure.  So glad I had the surgery! Every time I can walk, balance, try to think,I am relieved. I can read, and think.  However, the surgery takes a long time to recover.  Not just because you may be osteoporotic so the fusion is taking forever to get bone in it.  Not just because you are constantly aware of wearing your neck brace in cars and I still wear mine at night since the fusion has not solidified. And after 270 treatments I am now finally done w my electronic bone stimulator.  But, still having word search difficulty or finalizing sentences ending challenges. This is the verbal fluency issue from cerebellum.  I still get tired quickly and this could be the generic EDS exhaustion or more, unsure. I suspect it is more like a year and a half to fully recover.   I am girding my loins to deal with my lower back issues.  Pain is not th...

  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...