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The Driscoll Theory Validated—new video out! Comments?
Posted: 24 January 2014 11:53 AM   [ Ignore ]  
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You can find the video here (cut and paste, or just go to the front page of Prettyill.com):

http://prettyill.com/videos/watch/the_driscoll_theory_validated

I’ll be expanding on this (a great amount, actually), but wanted to get everyone up to speed as to what I have released thus far. I also touch on the huge question—WHERE DID YOUR BOOK GO?!
And before anyone asks (out of great concern and HORROR), I shudder when I see this because of the ghastly lighting (taped at home late at night—it looks like something out of the Blair Witch Project… and my OBVIOUS exhaustion. wink Would you like to see what I look like after working for 18 hours straight? Well, then, this video is for you! ha

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Posted: 24 January 2014 12:54 PM   [ Ignore ]   [ # 1 ]  
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I think the fact that you can now work 18 hours straight, bears testimony to the fact that your Theory WORKS!

You Rock Diana!

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Posted: 24 January 2014 01:30 PM   [ Ignore ]   [ # 2 ]  
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That was a FANTASTIC video!  CONGRATULATIONS Dr. Diana!!
It’s great how you included past videos and conferences to help us learn the time line of significant issues and breakthroughs concerning your work.  You’ve done so much to help us who have invisible illnesses and now at last, the experts have validated your hard work!!

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Posted: 24 January 2014 04:15 PM   [ Ignore ]   [ # 3 ]  
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Barbara - 24 January 2014 12:54 PM

I think the fact that you can now work 18 hours straight, bears testimony to the fact that your Theory WORKS!

You Rock Diana!

You know, Barb—that’s a great point. Please understand, though, that I am a wee bit ahead of you all, since I’ve worked on the next “layers” on my own body… But, absolutely, just by applying what I had learned to that point, I went from sleeping 20+ hours/day and being unable to even make a “to-do” list, to working 18 hours straight (again, do not try this at home!) and getting a ton of work done. Some day, I need to write (another) book (that stays on the shelves -ha) as I recount what it was like to live with basic dementia, hallucinations, among all of the other horrific conditions we try to “work around”. I always said, “When the doctors learn what is REALLY happening to us, they will be surprised that we could even survive this.” I stand by that statement today. Here’s yet ANOTHER HUG wink

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Posted: 24 January 2014 04:27 PM   [ Ignore ]   [ # 4 ]  
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charlie1 - 24 January 2014 01:30 PM

That was a FANTASTIC video!  CONGRATULATIONS Dr. Diana!!
It’s great how you included past videos and conferences to help us learn the time line of significant issues and breakthroughs concerning your work.  You’ve done so much to help us who have invisible illnesses and now at last, the experts have validated your hard work!!

Thanks so much, Charlie! What you don’t see are the years I spent prior to releasing The Driscoll Theory (2011), trying to get everything figured out! What a journey—and I look forward to getting us all across the finish line IN OUR LIFETIMES. Ten years ago, the “best minds” in POTS/EDS told me that “I was perfectly healthy, just more aware of my normal bodily functions.” WHAT?! After trying every medication out there, and drinking gallons of Gatorade, Pedialyte, taking salt tablets, and being told I needed a neck fusion and likely Chiari surgery (then later a brain shunt)—GADS—I’ve come out the other side with no surgeries, and basically “normal bodily functions”. wink I was even told to have my gall bladder removed, I needed surgery for a “broken” ileocecal valve (between my large and small intestine), I needed surgery on my rotator cuff(s)... The list goes on. I *think* many folks are like me—we may be able to avoid much of this if we can identify what’s happening in each one of us, and hit the source of the problem. Otherwise, I think we’d just have loose joints, basically, right? Not me! EVERYTHING in my body was shutting down. This is a horrific condition. Let’s see what we can do to make it merely “an annoyance”. In my mind, that’s what it should be. Ditto for Chronic Lyme Disease, “Fibromyalgia, Chronic Fatigue Syndrome. It was suggested (incorrectly) that I had all of these (as did my kids). I have some ideas as to what is going on—beyond The Driscoll Theory. But we need to take care of this in “layers”, as I’ve found, and the layers discussed in The Driscoll Theory are a necessary beginning. Big hug…

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Posted: 25 January 2014 05:40 PM   [ Ignore ]   [ # 5 ]  
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After trying every medication out there, and drinking gallons of Gatorade, Pedialyte, taking salt tablets, and being told I needed a neck fusion and likely Chiari surgery (then later a brain shunt)—GADS—I’ve come out the other side with no surgeries, and basically “normal bodily functions”. wink I was even told to have my gall bladder removed, I needed surgery for a “broken” ileocecal valve (between my large and small intestine), I needed surgery on my rotator cuff(s)... The list goes on. I *think* many folks are like me—we may be able to avoid much of this if we can identify what’s happening in each one of us, and hit the source of the problem. Otherwise, I think we’d just have loose joints, basically, right? Not me! EVERYTHING in my body was shutting down. This is a horrific condition. Let’s see what we can do to make it merely “an annoyance”. In my mind, that’s what it should be. Ditto for Chronic Lyme Disease, “Fibromyalgia, Chronic Fatigue Syndrome. It was suggested (incorrectly) that I had all of these (as did my kids). I have some ideas as to what is going on—beyond The Driscoll Theory. But we need to take care of this in “layers”, as I’ve found, and the layers discussed in The Driscoll Theory are a necessary beginning. Big hug…

Dr Diana, after 2.5 years on Diamox it seems my body has hit a wall, and like you wrote “everything is shutting down”. My PH is fine, I’ve upped the dose, and no help. I’m living in a soft collar, which helps a little, and about to order a hard collar as traction greatly helps reduce this horrendous back of head/neck pain. I have been researching Dr. Henderson’s work and my symptoms all line up with CCI/chiari/occult tethered cord/etc. Trying to figure out how this ties in or doesn’t tie in with the Dricoll theory? If a person has cranial instability (caused by our defective collagen and extreme looseness) that is causing issues, might it be the real root of some of our symptoms? Have you seen “A Unifying Theory” by Dr. Andrew J. Holman?  http://www.youtube.com/watch?v=Ei8LbUDkQno

I’m desperate for relief from this back of the head/neck pain, and looking into going to see Dr. Henderson, no small feat as I’m on the opposite coast. If he found CCI/chiari, etc. I would gladly have the surgery if it would end this pain and that it might help with autonomic issues as well. I’ve already lost my gall bladder and now have severe problems with my bile duct (SOD - already been treated once), my stomach isn’t digesting food much at all anymore (everything goes right through undigested into the toilet- with severe diarrhea that even 6-8 Imodium doesn’t slow down, and might be why Diamox isn’t working, cause everything exits before it can be absorbed..???), and I have to have surgery in the next month to have numerous kidney stones removed because they are chewing up my kidneys (probably exasperated by taking Diamox).

I would love to hear your thoughts on Dr. Henderson’s work and how his surgeries have helped EDS patients, etc.

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Posted: 25 January 2014 07:02 PM   [ Ignore ]   [ # 6 ]  
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Hi Ourfullhouse,
Sorry to hear you’re not doing well, it’s a frightening time when symptoms worsen. I have been on the Diamox over a year and it has brought me quite some relief and I really hope it continues.

I will make one comment on your current treatment regime and that is - SOFT collars only WORSENED my symptoms (I have Craniocervical Instability) because at my head neck junction, it allowed my head still to move independantly (in me it was backwards and forwards). I think you’ll notice the difference if you stick to a Philadelphia collar (and liners - a must!).  It holds your head in a better position to enable easier CSF flow from head to spine.  It soon cured my occipital pain and neck and shoulder pain.  It seems a bit restrictive at first but it’s worth it and I can testify that it does get easier to wear, I hardly notice mine now.

Secondly, I have promoted the video you mention before on this site at

http://prettyill.com/forums/viewthread/67/P15/#2770

I agree, he mentions some very plausible possibilities. Certainly for those who have had head and neck injury like myself.
Barbara
(UK)

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Posted: 25 January 2014 07:26 PM   [ Ignore ]   [ # 7 ]  
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I’m so sorry you are ‘hitting the wall’... :( Are your doctors watching your CO2 (and potassium) levels? I had to fiddle with my dose of Diamox for over a year… Now, if that is OK, what I’d really like to see, is if my first round of medications would take care of many of your symptoms (or maybe the second or third round). I’m working on the patents RIGHT NOW, actually! As far as surgery goes, I always save it as a last resort, when I’m sure nothing else is causing the problems, and imaging clearly reveals the problem. My mom had 24 surgeries—and I am more affected than she ever was. Gads. I’m working hard so that we can all brag that we remain surgery-free (or maybe we just have one or two? wink Trust me, I couldn’t have done the ‘dancing’ at the end of that video a few years ago (nor if I’d had surgery). I, too, felt like I was falling apart, I was wearing a cervical collar full-time, and couldn’t even turn my head without feeling like I was passing out.  When my 8 year old son began fainting, I knew there was no way HE was having potentially life-altering surgery until I was sure nothing was happening to him that could be reversed. Surgery was permanent. Both of us were “triggered” with viruses, but my daughter was basically sick from birth. Now I’m on a mission to spread the word that many of our symptoms may be reversible with medications—but testing is needed to see who has what. The Driscoll Theory hits many of our problems (for many/most people—not everyone). I’m pushing ahead with the rest of the issues now. BTW, I’m a huge fan of second opinions when it comes to surgery, which may not be ‘popular’ with some surgeons. Working as fast as I can… 

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Posted: 25 January 2014 10:27 PM   [ Ignore ]   [ # 8 ]  
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Barbara, thanks for pointing out you posted that video.  cheese  I am fairly certain the hard collar will bring relief and also be somewhat diagnostic in itself. Have to ask you though and I know you are in the UK so medicine works differently (lived there two years as a teen) if you had head and neck injury and Diamox helps, have you had imaging, rephrase, GOOD imaging (upright MRI, Flex/Ext MRI or such?) to see what is going on?

Interesting about the head and neck injury connection. I remember when I was in what turned out to be the temporary IRB for CCSVI treatment, ahem, one of the questions was if I (patient) had had a head injury/fall as a child. And, I had two bad falls onto my head as a small child. Had a whiplash injury at about 21 y.o. also. Plus HEDS. Besides being sick all through my childhood, the one thing that really disrupted my life, starting at about age 11 or 12 was the back of the neck/top of shoulders pain. Unrelenting. Dr’s stuck different labels on it (Scheuermann’s Disease first, which I believe was totally wrong Dx and later tendonitis). Then at 14 the headaches started. CT report said Pseudo Tumor Cerebri, but doctor told my mom that didn’t mean anything, so I went untreated until 2.5 years ago when I started Diamox. My neck subluxes and goes out of place easily, very unstable.

Which brings up one other thing that might have lead up to this extreme flair up, and that is that a few days before this intractable head pain started I had a chiropractic adjustment. Hadn’t had one in a long time and my neck was so tight I wanted to give it a try. And, even my chiro commented that I adjusted (cracked) more than I usually do.. by a lot (my ribs too). Still, the pain didn’t start till 4-5 days after that. So ???

Dr. Diana, my levels are monitored and are all good, potassium included (I take Potassium Citrate every day). I too would like surgery to be of last resort, but from where I am right now, with a house full of children who depend on me, I need help now.  downer If I get imaging that shows structural issues, the kinds that Dr. Henderson sees/treats I guess I’m not understanding how anything but surgery can help? As it is, getting into see Dr. H is 8+ months out right now (just read that on another forum). He’s getting as “popular” as Dr. Francamano.

It is difficult to walk right now (like you mentioned, dizzy when I turn my head, plus my balance is just totally off, left leg is dragging, etc.), brain fog is so thick I can’t think very well and struggle to find words (you can’t tell from this post, like how many mistakes and how long it took to write this, ha), reading words incorrectly, etc. and the totally disabling fatigue on top of the intractable head/neck pain. Oy.

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Posted: 26 January 2014 09:53 AM   [ Ignore ]   [ # 9 ]  
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ourfullhouse - 25 January 2014 10:27 PM

Barbara, thanks for pointing out you posted that video.  cheese  I am fairly certain the hard collar will bring relief and also be somewhat diagnostic in itself. Have to ask you though and I know you are in the UK so medicine works differently (lived there two years as a teen) if you had head and neck injury and Diamox helps, have you had imaging, rephrase, GOOD imaging (upright MRI, Flex/Ext MRI or such?) to see what is going on?

Interesting about the head and neck injury connection. I remember when I was in what turned out to be the temporary IRB for CCSVI treatment, ahem, one of the questions was if I (patient) had had a head injury/fall as a child. And, I had two bad falls onto my head as a small child. Had a whiplash injury at about 21 y.o. also.

CT report said Pseudo Tumor Cerebri, but doctor told my mom that didn’t mean anything, so I went untreated until 2.5 years ago when I started Diamox.

I had a chiropractic adjustment. Hadn’t had one in a long time and my neck was so tight I wanted to give it a try. And, even my chiro commented that I adjusted (cracked) more than I usually do.. by a lot (my ribs too). Still, the pain didn’t start till 4-5 days after that. So ???

Imaging ? I’ve had a stack. I have posted an anotated one at:-

http://prettyill.com/forums/viewthread/712/

I’ve paid out a small fortune, as very few were done on the NHS and I ended up travelling from the UK to New York for main diagnosis of CranioCervical Instability (CCI).  I’ve had about 4 recumbent MRI’s taken over an 8 year period. Flexion & Extension whilst recumbent, also upright MRI’s including flex. 

Here in the UK, the only thing reported was a Partially Empty Sella, taken a few months after my accident and the NHS finally conceded to a 3mm movement, after the recumbent flex & ext taken in 2010.  The treatment recommended for me here in UK is the ‘conservative treatment’ i.e. using the Philadelphia Collar 24/7 (originally connected to a body brace). They say surgery brings many risks (and many post- surgery problems) so seem very reluctant to do it.

I am stunned that your doc didn’t treat your Pseudo Tumor Cerebri!  In view of this alone, I would be asking for a thorough endocrine check.  How is your pituitary ?

With reference to the fatigue, muscle weakness, bone cracking and pain, you could be Magnesium deficient (I was grossly, despite serum Magnesium tests scoming back within normal range), so Epsom Salt baths/foot-baths, or Magnesium skin spray/cream, include more magnesium foods and consider supplementation of Magnesium and also Vitamin D (yes, this helps with the pain), see 3 posts starting at:-

http://prettyill.com/forums/viewthread/712/#3540

Did you read the NIH goverment doc on Magnesium Deficiency there, pretty enlightening eh ?
Barbara
(UK)

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Posted: 26 January 2014 08:40 PM   [ Ignore ]   [ # 10 ]  
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Thanks Barabara for all the info. If you have all the Dx for CCI, Chiari, etc. are you wanting to have a decompression and stabilization,IF you could get National Health to pay for it? Did you go to TCI in NY for your imaging? Would you/are you considering paying for the surgery out of pocket? I can’t imagaine living in the neck brace 24/7 as a viable way to live if there is something out there that can help this?

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Posted: 27 January 2014 10:49 PM   [ Ignore ]   [ # 11 ]  
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I am so confused. I found out that my 17 year-old daughter’s MRI from 3 years ago shows a Chiari 1 malformation with a 5mm herniation.  I was not given this information until a week ago when her pediatric neurologist called for the results since they haven’t been in her medical file for the past 3 years.  He dismissed the chiari and subscribed an anti-depressant. (yeah, thanks.)

My daughter has had debilitating headaches/migraines for the past 3 years.  With NO relief!  It came on with a sinus infection and never went away.  During this time she has had reconstructive surgery on both of her feet for “flexible flat feet”. 

After researching chiari I came across information about Ehlers-Danlos syndrome, hypermobility.  This is definitely her.  Then I came across the Driscoll Theory and was so excited that maybe her headaches could go away by taking Diamox, and maybe avoiding possible decompression surgery.  The only thing is, the Diamox isn’t working!! 

I’m confused about the whole ph level aspect of all this.  Can someone please explain?  I watched the video(s) where Dr. Driscoll talked about using the baking soda pills.  Shouldn’t my daughter have gotten some relief from the Diamox?  It didn’t help at all.  She has a Cine MRI ordered for this upcoming Friday (to measure her cerebral spinal fluid flow), and Duke University already said they would see her once we get that.  HELP!!!!!!

By the way, I believe that she has POTS as well.  Not sure about the mast cell though.  Oh, and she is VERY exercise intolerant.  Now that her feet are better we have tried to go on bike rides or do other forms of exercise and she ends up with such a bad headache she feels like her head is going to blow up!  She is very light and sound sensitive too.  No meds the doctors have given her for headaches/migraines have every worked.

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Posted: 28 January 2014 06:23 PM   [ Ignore ]   [ # 12 ]  
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Hi SickandTired, Here are a couple of videos that may help (or you can consider a consult if it’s not enough, OK?):
http://prettyill.com/videos/watch/diamox_and_alkalinity
http://prettyill.com/videos/watch/lets_talk_about_diamox

My thinking on this (very basically), is that doctors had always considered Chiari to be a birth defect of sorts, right? So why would an infection make her symptomatic suddenly (as happened to me and my son). If we can figure out what that infection did, could we reverse it somehow? Some people DO need Chiari surgeries, but why would the need only appear after an infection? Do you find that curious? Please consider with her doctors, of course, a trial with H1/H2 antagonists (Zyrtec/Zantac is a good combo). Does that help? As far as Diamox goes, I’ve seen doctors make every mistake in the book as to how to prescribe this correctly! This where therapeutic optometrists may know more than others.. More work being revealed soon, but I hope this helps until I reveal it! Big hug…

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Posted: 28 January 2014 07:03 PM   [ Ignore ]   [ # 13 ]  
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OurFullHouse, Oh my—your symptoms were worsened after a chiropractic adjustment?! OK, that changes things a bit. In order of importance, if your doctors haven’t considered this, please know that because we tend to be a thrombotic bunch, I wonder if you could have an intracranial thrombosis impeding your CSF outflow? Have you heard of ‘hair salon stroke’? Sometimes just bending our necks can cause a thromboembolism. My husband (who is not hypermobile) experienced stroke-like symptoms after a chiropractic adjustment. SCARY. As is in The Driscoll Theory book, and mentioned on the video, we can be prone to thrombosis, and an intracranial thrombosis (the transverse sinus is a common location for one) can slow CSF outflow. It can be bad enough to make us faint, but is easy to miss. There is a narrow window for treatment, so your doctor may want to consider that first. Secondly, your C1/C2 may have gotten out of position, and a properly performed x-ray can tell. Some chiropractors specialize in this, and they use instruments that use gentle vibration (NO CRACKING OR BENDING OF THE NECK) to encourage it to straighten again. This should return you to baseline again, without surgery. If the bone has been out of place for a while, it may need to be ‘encouraged’ back a few times before it stays put. This is about the only time I ever recommend chiropractic. Otherwise, they scare me… Honestly. Let us know?

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Posted: 29 January 2014 09:30 AM   [ Ignore ]   [ # 14 ]  
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Dr. Diana,
Thanks for replying so quickly.  I agree that it is curious about my daughter having her symptoms after her sinus infection.  What’s even more interesting is that I got the sinus infection at the same time and we had the EXACT same symptoms!  Headache, eye pain that prevented us from being able to read anything, extreme sensitivity to sound and light.  We would both freak out when commercials came on while we were watching t.v. (too sick to do anything else and couldn’t get off the couch) because they were so loud.  I was pregnant at the time.  I got extremely dizzy.  I had a difficult time grocery shopping because I was so nauseous and dizzy.  I constantly felt like I was literally going to pass out. 

Fast forward 3-4 months and I was doing much better, but my daughter wasn’t.  By the end of the pregnancy all of my symptoms were mostly gone.  So why did my state of pregnancy seemingly pull me out of the symptoms while my daughter was still sick? (She was 14 at the time.)  I have since noticed POTS symptoms creeping back in addition to a lot of facial pain in my sinus areas without any sinus symptoms.  My daughter definitely has Ehlers-Danlos syndrome, and I believe that I do too because I have always been extremely hyperflexible.  But other than plantar fasciitis in my feet I haven’t had the problems like her; the flat feet (feet surgeries) and a dislocated knee.  We both have body aches and pains but hers seem to be much worse. And I’ve notice that she is very affected by changes in the weather. Is it possible she got something from both sides of the family that makes hers worse?  Also, my other daughter (a half sister to my other daughter) is hyperflexible but doesn’t show problems with that, other than the fact that she has had gastrointestinal problems since she was 4. (had an endoscopy at 4 that showed mild esophagitis.) The GI docs can’t figure out any problem, so we gave up with them.  And now she gets these weird spells where she looks GREY and says she feels nauseous and like she’s going to pass out, and shakey.  I believe that all three of us have POTS symptoms. 

UGH!  It’s difficult now because I’m tired and not feeling well much of the time and don’t have a lot of energy to figure out what’s going on with all of us.  My question since the last post has to do with the Diamox again.  You stated that a lot of doctors don’t get the dosages right.  My daughter’s pediatrician is awesome, and he had no problem prescribing my daughter the Diamox.  He gave her 125mg, once a day, 20 pills to start.  He wasn’t familiar with using the Diamox for these symptoms.  How can he change the dosage to find a good fit for my daughter?  He is very open-minded.  Also, I am going to start her on the zyrtec/zantec regimen as well. 

Thanks for listening!

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Posted: 29 January 2014 02:35 PM   [ Ignore ]   [ # 15 ]  
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Ok.  Now I just feel crazy.  I feel like I am trying to diagnose and treat my daughter’s health problems and it is stressing me out! 

After researching online for hours and hours, it seems that instead of high pressure in her head, I am starting to think that my daughter has LOW pressure (intracranial hypotension).  I feel like she really could have a spontaneous low pressure, low csf volume headache, due to a csf leak.  She and I distinctly remember how she used to constantly drip clear fluid from her nose when all of this started 3 years ago.

Her Cine MRI is 2 days away.  My question is this:  Isn’t the Driscoll Theory about HIGH pressure in the head due to the external communicating hydrocephalus?  That is why the Diamox works, as it is a special type of diuretic. (right?)  So if my daughter has LOW pressure might that explain why the Diamox is not working? 

Am I completely off base here?  She has been diagnosed with Chronic Daily Headache by the neurologist, but I just read about the use of epidural blood patches for spontaneous or idiopathic csf leaks.  ????  This sounds like a possibility.  I hope that the Cine MRI is capable of detecting a csf leak.

Anyone have any input about this suggestion?

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