Hello my faithful friends. Here I am, breaking into The Eye Doc Blog yet again. I may need to consider having one devoted solely to this subject, don’t you think? Meanwhile, I wanted to reach out to you, first to thank you for your amazing stories of courage as we all help each other put the pieces of the proverbial puzzle together. It was also time to give you another update and a wonderful source of information. Thanks, Babe (that is Dr. Rich to you all. ahem) for posting this.

I’d like to address our Ehlers-Danlos friends (known and unknown), those suffering from POTS (postural orthostatic tachycardia syndrome) and those dealing with Multiple Sclerosis (even if the diagnosis is not certain). Research is on the cutting edge of science in these areas and because ‘I have donated my body to science while still using it’ (gotta love a pioneer, right?), I’ve jumped at the chance to have the veins in my neck and head tested for blockages or narrowed areas (stenoses) and poor flow. This condition is known as CCSVI (chronic cerebrospinal vascular insufficiency) and I was recently tested for it (BINGO!) and treated.

I don’t show my veins to just anyone, but for you, dear friends, I’ll give you a peek (hopefully you have a strong stomach). On your left, the large “garden hose” is my internal jugular vein (too large because the valve at the base was lousy), and on your right are my “Ramen noodles”. Somewhere in that mess is a tiny internal jugular vein, and most of the other noodles are “collaterals” – an attempt by my body to drain fluid from my brain my making its own route out of there!  I had that jugular vein ballooned, and the bad valve ballooned. Another vein was functional only when I looked to the left. It was not treated. (I knew before the procedure that if I lay on my back I feel as if I’m suffocating unless I tip my head to the left.)  By the way, Dr. Flanagan (mentioned below) was the first person to notice that I was developing a subtle left head tilt).

The venogram procedure for CCSVI is something I knew I needed to have before there was even a procedure (follow that one!). I knew there was too much pressure in my head, but I wasn’t sure what to do about it except for taking Diamox to relieve some pressure (which DID help). By comparing notes with many of you, I was convinced that our high pressure was confined (mainly) to the head and neck area – an interesting puzzle.

After the procedure, I felt better, even the same day. As a doctor, I am well aware of the “placebo effect” and I try to look as objectively at my condition as possible. I also know that I need to give it time to be sure the placebo effect is unrelated.

Knowing that, however, I was aware that I could think more clearly, multi-task, I had very little mental and physical fatigue, and strangely, I immediately began to make my own body heat (I’ve been hypothermic for years). I had a bit of a crash 5 days later (which I was told to expect, but no one knows why that happens to many of us). I’m climbing back out, though. Other symptoms haven’t changed, so I’ll keep you posted.

Meanwhile, I must thank Dr. Michael Flanagan for tirelessly helping me through all of this. He is absolutely brilliant in the areas of CSF flow and anatomy of the brain and cervical spine. I am one of those people who needs to understand everything, but he has hung in there with me through it all, even though I’m sure he’s had to repeat a number of things for me as I digest them and apply them both to myself and the many other EDS/M.S. patients I correspond with.

He has a wonderful new post out today on CSF Flow and he has a new website I highly recommend: http://www.upright-health.com.

He can save you hours of research, my friends. And amazingly, he will correspond with you. He lives and breathes this topic and has for many years. All of us are so different. We are not a “one size fits all” group of patients. I’m shocked at the attention he gives to individual cases. Thank you, Dr. Flanagan.

I am also incredibly grateful to Dr. Haacke (a gifted researcher who gave us an amazingly detailed analysis of the images).

I would like to close by mentioning that many M.S. patients may have undiagnosed Ehlers-Danlos Syndrome, and I would recommend that all M.S. patients are screened for EDS. 90% of all Ehlers-Danlos patients are never diagnosed, but they go on to develop M.S. And finally, if you have a diagnosis of “chronic fatigue syndrome” or (heaven forbid) “fibromyalgia”, may I kindly suggest those are symptoms, not diagnoses? Again, Ehlers-Danlos is something to consider.

Thank you everyone for your love and support, and I hope that I’ve been able to give you some help also as we travel this journey together.

A gentle hug,

Dr. Diana

http://theeyedocblog.com/2011/02/09/update-on-ehlers-danlos-syndrome-and-ccsvi/