Update from the PRISM Spine and Joint in Maryland

 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 been really evident over the last month I think.  

The constant electrical around my left shoulder, back, front, arm has been less and sporadic.  As has that pain, less frequent. Also the Right psoas muscle pain has been less constant.  That gives me hope for more of a epidural type treatment. 

I’ll update. It IS a HAPPY NEW YEAR! 

Comments

Post a Comment

Popular posts from this blog

9 Weeks! Update

Image
I decided to add a photo of one of our flowers with a bee to be positive and fun.  SUMMER!  My neck incision looks better all the time but still healing to do.  I had the CT last week and the report seems like everything is in place but the calcification is just starting, but I have no idea what it should look like until I get the info from the doctor.  Which could take while! And why?????  I will tell you! The IRONIC thing here is that for the past year I have dealt with so much crap from our HC system: delays, depersonalization, to the point of tears.  And I know the system?  And I have a PhD in Healthcare Administration! (I guess it helped now and again though!)  Here is the sequence of events to get a CT result to my MD surgeon.  CT done 5/12: Report already in my Epic chart an hour later. I try to give MD office two ways to access my EPIC chart but they do not have EPIC and of course do not allow any outside links for fear of viruses. ...
Read more

MADE IT HOME~!

Image
YIPPEEE SKIPPEE DOOOO! Made it! And we cannot thank all our neighbors and friends enough for the warm reception! We have a fridge full of food and also dinner(s)! AND house was decorated (seems cleaner too than I left it but….) and flowers etc! So so sweet! It was a bit brutal getting home a few times but mostly I just clicked my heels together hoping for Dorothy to kick in.  We got in about 10 PM Pacific so we were tired (like 0100) and just hit our lovely bed and we were so thankful for it.  Matthew gets here in a few hours so we shall soon have extra help too.   We appreciate you all so much! I will rest up from the journey after a couple of days and reignite that healing process.  As an Icelandic Shield Maiden Princess Should.  
Read more

Notes to EDS Patients having this surgery

  Here are a few things to know ahead of time: 1) you will have to go off of your NSAID or Celebrex for 3 months postop. I had zero idea how much my daily Celebrex was helping until I did not have it. Every joint hurts.  Especially those more prone to dislocation.  2) You will have really shitty days post op (especially immediately postop) but I had way more weeping days from pain prior to the surgery.  (It was daily hell) BUT I think what I am learning now at one month as I ebb off the anti inflammatories that all of those previous joint issues are clearly present. 3) ALso; I need to let people know, because I am pretty positive overall and that I tend to be hopeful, that this is NOT how I am EVERY DAY.  I am no fakey “all is well when it is clearly NOT”  type person. Over the years with EDS I have been in despair many times. BUT  I am lucky that I have excellent support systems and so many lovely people in my life, and those that will help me get thr...
Read more