Saturday, July 28, 2007

Ehlers-Danlos strikes again

Well I'm not a whole lot closer to answers. There's a lot of this-and-that so I'm just going to sort of toss it all out there there as best I can from my scattered head.

The mid-spinal issues (below my hardware) is from it taking the brunt of spinal instability. It's safer to leave it as-is than to go back in because of the Ehlers-Danlos.

My testing showed the problems with my hands and arms is not stemming from my spine at all (Tucson thought it was from the above situation but what they put down was apparently so weird NY redid everything b/c they didn't trust the local hospital doctor--neither did my local pain management doctor/neuro) but discovered a problem with the vein/artery in the side of my neck. It is not a neuro issue at all but with me it's caused by the Ehlers-Danlos. It's handled by thoracic surgeons. NY has seen it in a few of their EDS patients; they have never had a patient have the surgery, don't even suggest for most of them to see a thoracic surgeon but said my situation warrants being seen by a surgeon soon.

What was thought to be brain regrowth down into my spine (I'd had that portion of brain removed in AZ) is not regrowth at all but my brain being pushed down into it due to the cyst being so large. This is the first time I have seen it and I guess I wasn't expecting it to be this size, shape, etc. For whatever reason, I was figuring it on being this little bubble or something. Instead it's this tall, long, wide thing and is doing a good job pushing in and down on my brain, particularly the brain stem.

This type of growth is unusual and they aren't really sure why it happened or what's going on. In Tucson I'll do some testing and send it out to NY. If it's not helpful I'll go out there for some more thorough in-patient versions (continuous readings instead of one-timers). We'll see.

That's about it. Thoracic surgeon for nasty bugger going on with artery and nerves. Braces for damage already done. Tests in Tucson to be done and sent out. Possible follow-up test possible in NY. THEN they'll figure out this cyst. The big concern is still they feel there is not a very good chance of success for going in my head again, so they're looking at every possibility here in the hope of finding some answer.

I went out there hoping for some answers and a plan and instead found there's still not a good outlook, and added on another big problem. Not what I was expecting.

I'm glad to be home. My flights were all mixed up again today b/c of weather but boy, there is no place like home, family, and friends--the most important things.


  1. Thanks for the update. Keeping you and your family in our prayers.

  2. Hi, I'm Mandi from BT. I read your hub's update about you on his training log, and found your blog. Keesha, I just want to tell you that you are a powerful woman, and have perseverance on a level that I cannot even imagine. I pray that God will give you some amazing treasures through your trials.

  3. I'm Margy from Chattanooga, Tennessee. I just spent tonight reading your blog (both the old one and current one). My best friend Cyndy Bell is sitting in a local hospital yet again, this time for a fourth stint so far, struggling with yet another round of unanswered questions and puzzled doctors. Her road sounds very much like yours, Chiari misdiagnosed for years, then shunts and failed decompressions, then we finally found NY and this spring she had the same surgeries you did (including an eight hour nightmare tethered cord surgery with awful nursing care!!)...she also has Ehler-Danlos. But her current complication is that after so many brain surgeries, her pituitary gland and most of the hypothalmus has completely shut down. She's anemic, she can't absorb iron or vitamin D, has to take thyroid, aldosterone, steroids, HGH replacements...and nothing is balanced or working. Blood pressures nuts, edema swelling her tiny body all over. And her case is even more complicated as she has a pacemaker so she can't have any MRI's!! (pacemaker was put in to correct some dumb cardiac guy who did an ablation on her heart as didn't know the Chiari was causing the fast heartbeat).
    Like you, she has a strong faith and a couple Christian friends who still support her, but your pain and sorrow on this road is a mirror reflection of hers: especially in that she has a five-year old daughter who has never known a mommy who is well.
    I'm so deeply moved and touched by your openness to blog all this; my friend Cyndy would do the same if she had the strength and I felt so often in your writing that it is all of what she would be saying too. I know she is SO weary of the pain and the rudeness of medical personnel and the fight of the insurance companies...and the loss of quality of life (she was an educator and a RN herself!!). I came online tonight looking for answers somewhere...something that maybe I could pass along to her to share with her doctors to try and resolve her pituitary issues...she's waiting on Dr. M from NY to reply to an email.....but while I found no answers I did find your blog. When I cry and pray to a heaven that seems brass regarding Cyndy, I'll be joining your name with hers, begging God to bring you some answers too.