"Suffering the Slings and Arrows of Outrageous Fortune"

I happened to find the Driscoll Theory by accident – saw a mention of it on a forum post and followed the link. At the time, my daughter was very ill. She had spent months in a darkened bedroom – she had developed serious light and sound sensitivity, in addition to having a constant, severe occipital headache, nausea, dizziness, blurred vision, numbness in her limbs, not to mention the tachycardia and faintness whenever she stood up. We knew she had POTS symptoms but when she developed the other neurological symptoms we, and all of her doctors, assumed it was cervical instability. The only treatment was a cervical fusion – it was just a matter of time. We had accepted this as our daughter’s fate and knew the prognosis was mixed. A fusion may help her symptoms or it may not. Not what you want to hear regarding your 12 yo daughter.

Then, I read the Driscoll Theory. I immediately had a bright spark of hope but I stuffed it down, determined to sift through the information before I got my hopes up.

So I read it again. And again and again, until I understood it.  I looked up every medical term that was unfamiliar. I researched every condition mentioned in the theory – high intracranial pressure, externally communicating hydrocephalus, mast cell disease, and CCSVI. I went to the prettyill.com forum and asked questions. I communicated with Dr. Diana about the details of the theory.

The more I read, the more hopeful I got. Then I took the big step of getting my daughter’s head circumference measurements from the pediatrician. That was scary – part of me didn’t want to see them. What if that info revealed that the theory didn’t apply to my daughter? I finally bit the bullet and got them. It was the piece of evidence we needed – she indeed fit the profile of the theory. I was ecstatic – it meant she might be able to avoid a fusion and a simple medication could make her feel better almost immediately.

Then it was a matter of finding a doctor to listen to us and prescribe the Diamox. That was a journey in and of itself. We were on my ‘plan E’ before we got a prescription for Diamox and I had plans F and G in the wings, working on plan H if necessary. It just seemed reasonable to give this little pill a try for a couple nights, instead of continuing the same treatment we had been unsuccessfully trying for a year and heading for a fusion. We finally found a doctor (a physicians assistant at our local neurologist office) willing to listen and he willingly prescribed a trial of diamox.

2 hours after my daughter took a tiny dose of Diamox, her headache and dizziness started reducing. The next day her headache was practically non-existent. We increased the dose to the prescribed 125 mgs the second night and the headache was gone. Her positional blurred vision was gone. Her symptoms improve day by day and now she is headache FREE on a daily basis.

For us, it is a miracle. I don’t have any other word for it. Is it the answer for everyone with EDS? Maybe not. I know there are people who have real cervical instability and need a fusion. But I also know that fusions are not successful for all EDSers who have them. At the very least, this theory is worth a look if you have the symptoms. If you can get a hold of your infant head circumference measurements, that will be the clue. Unfortunately, adults with these symptoms may not be able to access that info and are in a difficult position. The EDS experts are urging caution and that is understandable, to a certain extent. The problem is, these are real people who are really suffering. Waiting a year or two for data to come in is an interminable wait for a person whose brain is slowly being damaged. I don’t have any good answers for those people. Each person in this situation must make their own judgement. Some may feel that a trial of Diamox is reasonable; some may feel it prudent to wait for more information.

What I do know is this: The Driscoll Theory is a good thing, arguably the best thing to happen to the EDS community in a very long time – maybe ever! It offers real relief via a cheap medication that is already well tested. It offers a chance to avoid life changing surgery. It offers hope in treating the some of the most difficult aspects of EDS. I, personally, am committed to spreading the word about this theory. Of course, to us, it is not a theory – it has been proven as fact. As time goes on, I believe it will become part of the standard of care for EDS patients. And it will relieve untold suffering.

Dr. Diana could have been content with finding the answer for her children and herself. But she felt compelled to share and help others with this information. By doing so, she has opened herself up to both praise and criticism and has responded with grace to both. Her research will soon answer any criticism and will drastically change the way EDS patients are treated.

I don’t know what the future holds for my daughter. She could still need a fusion. She has POTS symptoms – we think they will fade away (per the Driscoll Theory) over the coming months, but we don’t know that for sure. Obviously, she still has the joint and chronic pain issues to deal with. However, I am confident, despite the uncertainty, that my daughter’s future is much, much brighter because of the Driscoll Theory and Dr. Diana’s generosity. And there are not not words to say how grateful I am.

{If you are interested in learning more about the Driscoll Theory, click here to go to Dr. Diana Driscoll’s website or click the link on the right hand column.You can download the theory as a document and watch videos on the theory and various other topics related to EDS.} 

Comments on: "The Driscoll Theory and how it helped us…" (1)

  1. http://artemis179.livejournal.com/522.html Thanks for that awesome posting. It saved MUCH time 🙂

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