External Commuicating Hydrocephalus –video is up!

[Debbi]

Hello Dr. Diana!
I want to thank you for all of your help!!! You have given me so much hope!
Where is the video located, I am not seeing it under the other videos?

Tomorrow we go to our eye doctor and she is going to dilate his eye. I pray this will lead us to the doctor that will give us the diamox…. and mast cell stabilizers..

Also…the diamox does many have trouble with it if they have a sulfa allergy? What is the other drug that you can use if you have a sulfa allergy?

thanks again!

[Debbi]

Found it 🙂 Thanks!

[Dr. Diana]

Found it 🙂 Thanks!

Great! About sulpha allergies — you want to work very closely with your doctor if you are allergic to sulpha. On doctor I know of performs a “scratch test” on the patient first. Another administers it in the hospital to be sure they don’t react. Others just say “nope”! Unfortunately, we don’t have a non-sulpha substitute. :down: The only other option is a shunt that is not yet developed! We need more research! Please let us know how you do, OK?

[Dr. Diana]

I hope this answers many of your questions about external communicating hydrocephalus in EDS — how to recognize it, how it is often misdiagnosed, and how to treat it!

[MissOSUfan]

Dr. Diana – Thanks for explaining this! I really understand it all more clearly and wish I had when I saw the neuro opthalmologist I was referred to as she corrected me several times on the use of the word hydrocephalus and it being reserved for use only when the ventricles are enlarged. Blah! I just didn’t know enough to defend myself or “The Theory”, but I’m well armed now. As it turns out, she did an ultrasound on my optic nervers and found them to be be enlarged and too much CSF around them and said officially “it’s as if” I have too much CSF around my brain and diagnosed me with possibly pseudotumor cerebri or idiopathic intracranial hypertension. She said my seymptoms would get better if I lost weight according to studies at the Ohio State University. Blah again!

My family doc started me on Diamox because he’s read the Driscoll Theory and helping me get answers and on the right treatments. I have major sulfa allergies, but have recently started Celebrex and the Diamox with no reactions whatsoever. I was terrified of a reaction, but I’ve been on both for about 3 months now and going strong.

I’ve had positive results with the Diamox including reduction of those horrrible headaches. On the day I started it I didn’t think I even had one until the medicine kicked in and I could feel the pain I had gotten used to dealing with just slip away. The motion sickness, sensory overload, poor sleep have all improved. I still have ear pain with drainage (this is especially bad in the mornings) and the occasional, suspicious fluid leaking from my nose so I’m wondering about the dose and am on 500mg daily so not sure that it’s enough. I swear my vision even got crisper on that first dose Is that possible?

Speaking of vision changes, I’ve had a hard time focusing my eyes lately so went to my optometrist for my yearly exam and to be checked for plaquenil retinopathy since being also diagnosed with RA on top of EDSPOTS, yadda, yadda, yadda. I thought I was just going to need bifocals, but instead they tell me I have esophoria and that my eyes must be turning inwards. I’m wondering if this could be due to plain ole EDS or could this have something to do with the cranial nerves being stretched out from the external communicating hydrocephalus? I’m dangerous on the web now that I understand this whole business and read that downward pressure of the brain can cause VIth nerve palsy that can possibly cause esophoria. Anyone else experience this or Dr. Diana, since this falls squarely in your realm of expertise, could you care to offer an opinion? I grilled the eye doc at length and he said it’s due to aging (I’m 41) and he actually has people that have this for no reason so maybe I’m just overthinking things here, but I am terrified that the glasses I just ordered with the new prisms to correct for this condition will have me looking like I’m wearing fish bowls strapped to my face. Ugh! 🙂

[MissOSUfan]

I hate it when I prematurely click submit!

I just wanted to say thank you and thank God for you, Dr. D. You do so much to help others and it’s so appreciated!

[Dr. Diana]

I hate it when I prematurely click submit!

I just wanted to say thank you and thank God for you, Dr. D. You do so much to help others and it’s so appreciated!

Thank you! As to your questions — you are a PERFECT person to join in our blood work registry! Please tell me you will! I believe I’ve figured out the link between POTS, metabolic syndrome, pseudo-tumor cerebri and external communicating hydrocephalus, and I think this test will show it, and give us a treatment option. I have a (newly acquired) “frozen shoulder” — the doctor said it is related to metabolic syndrome. Oh, REALLY?! I was just pulling all of this together, and that just compounded the evidence for me.

I’m SO glad you were able to tolerate Diamox! That should offer some support for the doctors who shudder because of sulpha allergies. I work with two doctors who are careful (scratch tests, hospital administration, etc), but whose patients rarely react. Good to hear!

Esophoria or esotropia does NOT occur with age! Heavens. Betcha’ $5 the Diamox will reduce, if not eliminate it. 🙂 Let us know? If you missed it, I chat a bit about my experience with lateral rectus palsy, too in my CCSVI interview. Take a peek? One patient started Diamox, and had episodes of fusion for the first time in years, and she was up to 17 prism diopters (that’s a LOT). So I wouldn’t worry too much about that.

Would you mind putting your doctor’s info on our “good docs” thread? That could be so helpful.

Thanks again, my friend. You made my day.
🙂 Diana

[MissOSUfan]

I hate it when I prematurely click submit!

I just wanted to say thank you and thank God for you, Dr. D. You do so much to help others and it’s so appreciated!

Thank you! As to your questions — you are a PERFECT person to join in our blood work registry! Please tell me you will! I believe I’ve figured out the link between POTS, metabolic syndrome, pseudo-tumor cerebri and external communicating hydrocephalus, and I think this test will show it, and give us a treatment option. I have a (newly acquired) “frozen shoulder” — the doctor said it is related to metabolic syndrome. Oh, REALLY?! I was just pulling all of this together, and that just compounded the evidence for me.

I’m SO glad you were able to tolerate Diamox! That should offer some support for the doctors who shudder because of sulpha allergies. I work with two doctors who are careful (scratch tests, hospital administration, etc), but whose patients rarely react. Good to hear!

Esophoria or esotropia does NOT occur with age! Heavens. Betcha’ $5 the Diamox will reduce, if not eliminate it. 🙂 Let us know? If you missed it, I chat a bit about my experience with lateral rectus palsy, too in my CCSVI interview. Take a peek? One patient started Diamox, and had episodes of fusion for the first time in years, and she was up to 17 prism diopters (that’s a LOT). So I wouldn’t worry too much about that.

Would you mind putting your doctor’s info on our “good docs” thread? That could be so helpful.

Thanks again, my friend. You made my day.
🙂 Diana

Dr. D – Wow and to think I almost didn’t post anything! What a great feeling to know that my medical issues would make someone’s day. Boy, my mom will get a kick out of that!

I absolutely will join the blood work registry! I just need to figure out hwo. I’ve had so many tests and have copies of everything that I will be happy to share with whomever or I will go do new tests if necessary. Whatever it takes to help! I’ll also add my family doctor…what a patient saint that man is for putting up with me! He has referred me out to the best specialists in Columbus, OH, but I can’t get them to listen and well, it’s hard to tell someone you think you have serious issues when a lot of your tests APPEAR normal. My tryptase is slightly high, but still can’t find anyone to test further, but that’s another whole ball of wax.

So frozen shoulder, huh? Painful! My dad has this, but he is supposedly the non-EDS contributor for me and his is due to diabetes I’m guessing. Looking at your photos, you sure don’t look like the metabolic syndrome type if there can be such a thing! Well, you know it’s all high cholesterol, obesity, etc., as the supposed contributing factors. Have you checked out the study OSU has done on pseudo-tumor cerebri? I was wondering if the findings of the majority of people diagnosed were women around 40 that had experienced recent weight gain just prior to diagnosis, which had them suspecting endocrine system dysfunction of some sort, comes into play with all of this as well. They immediately jump to the conclusion that because I’m a woman and age 41 that I’m their stereotypical finding. They’re actually doing a clinical study and accepting anyone that has 2 family members from the same family with IIH. Sadly, I can’t get anyone else to go through the hassle and heartache I’ve endured to get this far. I’m determined!!!

So, I’m still missing something and can’t find much info on the web, which that’s how we know we’re uh, unique since you can find almost anything on the web. Pseudo-tumor cerebri is just intracranial hypertension or increased cranial pressure? External communicating hydrocephalus is same thing? I looked at my MRI again and it doesn’t look atrophied, but just the opposite. Again, I know exactly squat about how to read MRI’s, but am just comparing. I can’t figure out if my sella or whatever is half empty either and everyone that’s looked at them says I’m completely normal. What a crock! I trust no one.

Interestingly enough, I didn’t have esophoria until I started the Diamox. I’ve been on it for about 2 1/2 months now and I saw a big difference in the first few weeks, but then it was as if the benefits just diminished until I’m right back to swuarre one. In fact, the eye problems, ear pain and drainage in the mornings have gotten worse. Should I be taking a higher dose tnan 500mg daily?? Now I’m angry that my optometrist told me that this was in no way connected to the PTC!!! I have the worst luck with doctors, I swear!!!

Does the link between all these fun things we have require a Driscoll Theory 3? Is the test to prove it a run of the mill test that a famillyl doc could order or will it require a specialist? I’m dying over here! I have a very strong curiosity gene and find all of this fascinating. 🙂

Thanks for responding. You made MY day and continue to do so with all you do. – Jodi

[MissOSUfan]

Dr. D – Sorry for the 2000 questions! So I looked again and can’t find where to do the blood work registry. Please help! 🙂

I watched the video I believe you were referring to and the picture is coming together even more clearly for me. So people like us with either EH or PTC most likely have lateral rectus palsy, which is also called VIth nerve palsy and is truly affecting our muscles? I too have and have almost always had double vision when looking to the sides too far. It actually hurts me to do it and makes me nauseous so I just don’t do it. The breaking fusion issue and seeing things move away explains so much for me. The inability to focus when looking forward is still esophoria, but caused by VIth nerve palsy or lateral rectus palsy then? I will go over again tomorrow BEFORE the melatonin and restless leg meds and I’m sure it will be obvious. 🙂

I’m excited because I think I can have my doctor refer me to an interventional radiologist to look for CCSVI and I found a good one here in Ohio so that’s on my to-do list. Now I just need to get on the ball again about tracking down a mast cell specialist. It sounds so simple, doesn’t it? 😉 Thank you!!

[Dr. Diana]

Interestingly enough, I didn’t have esophoria until I started the Diamox. I’ve been on it for about 2 1/2 months now and I saw a big difference in the first few weeks, but then it was as if the benefits just diminished until I’m right back to swuarre one. – Jodi

OK, deep breath now, K? I am starting a list of folks interested in the registry (STILL negotiating with the lab!) I’m arranging it so it will be a breeze to get the tests ordered and completed, even if your doctor doesn’t draw blood. Cool? I guess I’ll put you down as “interested”. 🙂

Diamox — this comes up a lot. Diamox makes us acidic and if our serum CO2 drops below 22, it stops working. Taking more just compounds the problems. This is why we take baking soda capsules, drink alkaline water, etc. Can you have your serum CO2 and potassium monitored? It will start working again when you are less acidic. Cool?

In all honesty, you may not need a mast cell specialists, especially if your testing is looking good. It would be terrific if your terrific doctor would add Cromolyn Sodium to your regimen, and after the registry, we have a treatment plan that may even make mast cell meds unnecessary, or minimally necessary. Sound good?

I hope to announce details for the registry very soon. Fingers crossed!
🙂 Diana

[Dr. Diana]

Dr. D –

I’m excited because I think I can have my doctor refer me to an interventional radiologist to look for CCSVI and I found a good one here in Ohio so that’s on my to-do list. Now I just need to get on the ball again about tracking down a mast cell specialist. It sounds so simple, doesn’t it? 😉 Thank you!!

Hon, you may want to hold off on TREATING the CCSVI (looking for it is good, though). You’ll want the results from the registry first (take my work on this, K? Details coming!)
🙂 Diana

[MissOSUfan]

Dr. D –

I’m excited because I think I can have my doctor refer me to an interventional radiologist to look for CCSVI and I found a good one here in Ohio so that’s on my to-do list. Now I just need to get on the ball again about tracking down a mast cell specialist. It sounds so simple, doesn’t it? 😉 Thank you!!

Hon, you may want to hold off on TREATING the CCSVI (looking for it is good, though). You’ll want the results from the registry first (take my work on this, K? Details coming!)
🙂 Diana

Ok, now we’ll see how long the calming effects last. Way cool on the blood registry! You put me down as interested, tapping her foot and chomping at the bit to race off to the nearest lab whenever you say the word!  Genius idea, I tell ya and I’m just glad you’re on our side. Well, not glad you too have this, but you know what I mean.
Cool on the pH issues and Diamox too. I always have docs tell me I’m very acidic and I always wondered why my CO2 is always low. I just got on MyChart because I’ve had every lab known to mankind drawn 2 months ago and I knew my CO2 was slightly low (it’s usually lower) at 20 (21-31) and my K+ was 4.4 (3.5-5.1), but I hadn’t started taking the Diamox yet. This is just fascinating stuff and you have an answer for everything. Amazing!! I Ok, so I will add these labs to my list of things to have my darling PCP check. I’ll investigate the baking soda capsules and alkaline water.

I’m intrigued by the cryptic message on mast cells! I’ll ask darling PCP to put me on Cromolyn Sodium as well and will wait rather impatiently  for more info. Sounds very good!!

I need PCP to order the right test (fMRI, yes?) or refer me to an interventional radiologist still for the CCSVI diagnosis? Of course I trust you on all this! You’re the drum major of this offbeat, disjointed (heh), ragtag, band of misfits so you lead, I’ll follow. -Jodi

[Dr. Diana]

I’m intrigued by the cryptic message on mast cells! I’ll ask darling PCP to put me on Cromolyn Sodium as well and will wait rather impatiently  for more info. Sounds very good!!

I need PCP to order the right test (fMRI, yes?) or refer me to an interventional radiologist still for the CCSVI diagnosis? Of course I trust you on all this! You’re the drum major of this offbeat, disjointed (heh), ragtag, band of misfits so you lead, I’ll follow. -Jodi

I think that is a great start for now. You MUST get your CO2 above 21 for Diamox to even WORK, so that will be great. Great idea to get on Cromolyn. Smart move. Yes, you’ll want an fMRI, but as I mentioned, you may want to wait for the TOP SECRET blood work. 😉 Did you see my video of the lecture at ISNVD? It looks like we have compression of our vagus nerves from the enlarged veins, and if they are too big (like my son’s and mine), angioplasty won’t help. In fact, it may cause some endothelial damage that makes us worse. Yikes. If the veins are smaller, then angioplasty may be just what we need to take pressure off of that nerve! Either way, we want our cytokines in balance first, so that will buy me some time to finish negotiating with this lab (can you say “snail speed”?). Jeez, they’re killing me. But they are the only lab offering this right now, unless I go to a University research lab and work something out (always have a Plan B). Pedaling, pedaling… 🙂 Diana

[MissOSUfan]

I’m intrigued by the cryptic message on mast cells! I’ll ask darling PCP to put me on Cromolyn Sodium as well and will wait rather impatiently  for more info. Sounds very good!!

I need PCP to order the right test (fMRI, yes?) or refer me to an interventional radiologist still for the CCSVI diagnosis? Of course I trust you on all this! You’re the drum major of this offbeat, disjointed (heh), ragtag, band of misfits so you lead, I’ll follow. -Jodi

I think that is a great start for now. You MUST get your CO2 above 21 for Diamox to even WORK, so that will be great. Great idea to get on Cromolyn. Smart move. Yes, you’ll want an fMRI, but as I mentioned, you may want to wait for the TOP SECRET blood work. 😉 Did you see my video of the lecture at ISNVD? It looks like we have compression of our vagus nerves from the enlarged veins, and if they are too big (like my son’s and mine), angioplasty won’t help. In fact, it may cause some endothelial damage that makes us worse. Yikes. If the veins are smaller, then angioplasty may be just what we need to take pressure off of that nerve! Either way, we want our cytokines in balance first, so that will buy me some time to finish negotiating with this lab (can you say “snail speed”?). Jeez, they’re killing me. But they are the only lab offering this right now, unless I go to a University research lab and work something out (always have a Plan B). Pedaling, pedaling… 🙂 Diana

Thank you again for your response and guidance on this! So maybe things are coming together for me after all and I don’t have as much to do as I previously thought. Doc has ordered metabolic panel label and is working on the cromolyn sodium compounding pharmacy issue. Is nothing easy for us??? Sheesh! I’ve asked the doc about sodium bicarb pills too so I’m hoping that will help. Mastocytosis issues is something we were actively seeking expert help on due to my symptoms. My tryptase was high, but not in the 100+ ballpark so I guess no action needed there for now with the SECRET SQUIRREL INFO to come! 🙂 I found a doctor at the Dayton Interventional Radiology center that will do consults and order any necessary tests to look for CCSVI, but as you recommend, I believe that will also be shelved due to forthcoming secret squirrel knowledge. All things considering, I’m not in bad shape for the shape I’m in! 🙂

I did see the lecture about the vagus nerve compression. Fascinating! One should never think we’re at the end of your theories or discoveries! Cytokines are very interesting from what I can read and so complex…definitely not for the faint of heart to research so silly me that I thought I could quickly figure out what these little boogers did in a quick search. Ha!

I hope you get your lab issues squared away soon. I would imagine something like you’re working on does take a fair amount of time to setup so hang in there! I can definitely say snail speed as I work for a government sub-contractor! What a pain in the patooty to try to get anything done!

I will updated on the EC hydrocephalus. I think it’s definitely related to the Esophoria because I had more fluid drain from my ears this morning than I typically do, the headaches were worse and it didn’t take me to get behind a LCD to notice the blurry vision. Just looking around outside was tough and I felt so disconnected from my surroundings because of it. We take our vision for granted until we can’t see! I did get my new glasses late this afernoon and what a tremendous improvement.

Did anyone else experience a reduction in anxiety or moodiness after beginning Diamox? I thought mine improved, but appears to be spiking…I feel sorry for the poor souls around me! I can tell I’m acting different as a result, but I honestly have tried to control it and just can’t. I also am ditzier than usual, memory is worse and I misread everything. Here’s hoping we all survive until I get this straightened out!

Thanks again!!!!!!!!!!!!!!!!!!!!!!!

[tonkadu]

Dr D, I just watched your video on external communicating hydro video and I noticed that you mentioned that you and your family get motion sickness easily and that this is a symptom of hydro. My wife, who was on diamox but also was pretty acidic, went to the er for a terrible case of vertigo and motion sickness. Do you ever get vertigo with your motion sickness?

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