Prolo and Gray Matter (this is long, sorry)

Prolo and Gray Matter

The book I am reading is called “Gray Matter”, the Doctor that wrote it is Dr. David Levy. Now let’s not confuse him with the EDS Orthopedic Surgeon that we all know and admire, Dr. Howard Levy. Dr. David Levy is a Neurosurgeon and he practices medicine in California. I have learned so much from this book and like it so much that once I finish it, I am reading it again! When I began reading the book I didn’t ever expect that I would be able to correlate it to Ehlers Danlos.. The thought didn’t even cross my mind. 

If you have EDS, chances are you are familiar with Vascular EDS. For those of you not familiar with this type of EDS, some call it VEDS, others call it Type 4, we all call it deadly. VEDS is the most pestilent type of Ehlers Danlos. VEDS is caused by Structural defects in the proal chain of type 3 collagen, and is encoded by the COL3A1 gene. VEDS, like all EDS is an autosomal dominant condition. It is believed that 1 in 250,000 people have VEDS. It is my opinion that any person with any type of EDS is at an elevated risk of dissection, aneurysm, or rupture, whether they have VEDS or not. We not only have to think about the Vascular system but the digestive system and for women, the reproductive system as well. Knowing that you are at risk for VEDS is pertinent, especially in an emergent situation. For instance, you go to the ER for a searing pain in the abdomen, chest or head and they do the “typical” workup. Yeah, that’s not so good! If it is a VEDS related incident, seconds count! EDS patients, please educate yourselves and your loved ones about the protocol for a VEDS patient, some places just won’t know what in the world to do with you! Knowledge is power and in this case, possibly life saving! 

NOW, what in the world does this have to do with “Gray Matter”? Well, as an EDSer I have heard many of my “Bendy Friends” talk about embolisms, angiograms, coils, glue, ruptures, dissections and aneurysms. These Bendy Friends are all to familiar with these terms because they have VEDS and have had “vascular incidents” or organ rupture. My good friend Amanda passed away in December after an operation to place coils for vessel repair. This wasn’t her first party with her surgeon, it was a common procedure for her. Her entire body, especially internally was so weak and fragile. I can only imagine and assume that her vessels and organs were a lot like “wet kleenex”. Reading Dr. Levy’s book has given me a wonderful insight into the world of Neurosurgery and what happens on the other side of the anesthetized patient. My first healthcare job was in a CVICU and as I got to know the Docs I worked with and gained their trust, I experienced some pretty awesome things! I loved scrubbing in on CABG’s (open heart surgery in “normal terms”) and all 4 years there I was like a little sponge...soaking up and learning everything I could. I thought Cardiovascular/Thoracic Surgeons had stressful jobs but they are “Kindergarten Coloring” compared to a Neurosurgeons job. Whew!

Okay, please understand that the “Neurosurgery” element in this book is just that; an element, it is a very minute part of the stories. I appreciate the detail of the procedure’s because I am a nerd! The MOST amazing fundamental of “Gray Matter” is the power of forgiveness and prayer. I don’t want to “give it away” because I want everyone to read this book...I don’t care what your beliefs are or aren’t, I want YOU to read this book. I promise, it will have a tremendous effect on you. IF you purchase this book and disagree with what I am saying, you just let me know...I’ll send you a check and you can send me the book. A refund of sorts! I’ve laughed, cringed, held my breath with Dr. Levy and I have cried. Most importantly, I understand the power of forgiveness more than ever before. Dr. LaVallee thinks that I most likely have a type of VEDS but I haven’t been genetically tested and probably won’t be. I’ve yet to have a vascular incident but if I ever do, I pray that I am in California and Dr. Levy is close by! 

So, speaking of forgiveness. I forgive Dr. Amnott for sticking all those needles in me yesterday! I hope he can forgive me too, I drove after I took the valium. Shoot, he doesn’t need to forgive me as much as the poor tire I popped and that poor rim do. Yes, yes, yes, my blog reading friends, whomever you may be and wherever you are. DO NOT drive after you take Valium!!!!! If you do feel so inclined to do such a daft thing please heed this warning....When you see that you are about to hit a curb, please swerve to miss it instead of thinking “ooops, that’s gonna be a little bumpy”. In all honesty, hitting that curb probably had NOTHING to do with the Valium...I hit curbs often. I did fess up to my Doc. I probably shouldn’t have, but he told me not to drive on Valium. In my defense, that was last week, not yesterday. However he did say it (write it) emphatically, 3 times, so it should have been good for 3 weeks. He probably was laughing at me inside but he just said “NO more Valium”. Good, made that decision easy enough (read previous blog).

This morning I feel terrific! When I woke up I could feel that “saran wrap” sensation! You know when you cover a bowl in Saran Wrap you stretch it firmly across the top of the container? My lower back feels like the taut saran wrap. Ahhhhh. Let’s not confuse this taut feeling with hypertonic or stiff- this feels fantastic, not icky. I am still sore from the procedure but not much, we’ll call it a 4.5 on the Mark LaVallee pain scale. If you are interested in Prolo (GARY CORNMAN!!!!!) please let me know. If you are in the Hudson Valley area, I’ll introduce you to a great Doc, I’ll even hold your hand during prolo! If you are in the South Bend area, I can introduce you to a great Doc; I can’t vouch for the SB Doc in a clinical aspect but I know many people that can. I do know he’s a wonderful person and I also know he wrote a text book on Prolotherapy. I call him the “Prolo Pro”, his real name is Dr. Mark Cantieri. If you are anywhere else in the world and interested in this treatment, contact me and I’ll do some research for you and help you find a good Doctor. (*Disclaimer Prolo is not something to “jump into” with just any Doctor. Trusting just any ole Doc is not wise. I recommend “dating around” first before you commit.*) I am a big fan of Doctors of Osteopathic Medicine versus Doctors of Allopathic Medicine (Okay that’s a DO vs an MD). If you have EDS and you most likely do if you are reading this blog, GO TO A D.O, at the very least as your General Practitioner. 

So, let’s recap, I have been a bit wordy

-Read “Gray Matter” by Dr. David Levy

-Prolo Rocks- As Anne says “DO THE PROLO....” (Partial quote! I love you Anne!)

-Don’t just let any Doc do Prolo on you!

-If you have EDS please educate yourself about VEDS, if you don’t have the gumption, get in touch with me and I’ll share my minuscule knowledge with you. 

-D.O.’s do it better! Seriously, they even adjust you; they’re great at “Putting you in your place” (ha ha ha ha)

-Don’t drive if you have taken Valium and if you do, avoid all curbs....You don’t need to check it, it’s there!

-Read “Gray Matter” by Dr. David Levy

-Have a wonderful weekend! Make it a great day! Push through the pain, come on, I know you can do it!

-READ “GRAY MATTER” by Dr. David Levy!!!! Do it! 

Gentle Hugs! 

Ila