CCSVI confirmed as my daughter's cause of POTS

I am very glad you found your answer. Kudos to you for pursuing this.

I would greatly appreciate a brief description of the way in which you convinced the doctor to do the MRV and why the previous doctors couldn't find the CCSVI.

Also, what is the plan from here on out for addressing this issue?

Again, congratulations. I hope your daughter's health improves significantly now.

I will answer the question about our previous doctors questions first.

1. Reimbursement- It takes time to listen to a complex history- time that is not paid for means donated time from the doctor, something many are unwilling to do.

2. Ego- Rather than helping to find an answer it becomes the patient's "fault" the doctor doesn't know what is wrong.

3. Ignorance, or rather lack of knowledge- Medicine is expanding at a phenomenal rate and doctors can't keep up with all the latest research.

4. Lawyers- Our country is hog tied by lawyers. The doctors cannot make a mistake for fear of a law suit. They must always err on the side of protecting themselves from the frivolous law suits out there. Red flags go up with complicated cases!

Ok off my soap box.

My daughter and I have put hundreds of hours into internet searches to put the pieces together. What it took was an internist who listened and a neurologist who had no ego. An Ultrasound was ordered for a vertebral artery study and the venous problem was found. Then an MRI/MRV was ordered and the diagnosis was there. Unfortunately the vascular MD completely dropped off the face of the earth, I believe from fear of #4 and #3. We then hit the internet and we were very careful to read only well juried articles and that led us to Dr. Dake at Stanford. There may be no immediate cure or fix but at least we now know what is wrong with her.

Congratulations and I'm clapping wildly for you and your victory!!! 'Take That' - ! Doctors really do a disservice to THEMSELVES when they give into the automated "norm" in medical offices today - interrupting patients while speaking every 2 minutes - visits lasting on average 7 minutes. There can be zero satisfaction in such a one way arrangement - there is no doctor patient 'relationship' at all -- leading doctors to depression and suicide. So while they become doctors - viewed by many to be a helping profession - they truly can have just the opposite happen - they harm others and themselves. Sad but true.

May I ask what her symptoms were? Sounds like the ultrasound of the neck - done for examination for arteries - ended up showing an incidental finding of a venous problem?...... Also another question if I may - is it difficult to have an MRI/MRV? Or is it kind of the same as all the other MRI's one might have - laying still on a table for half hour or so?

I ask questions because of my experience of getting dizzy and nauseous with extension of my neck. Once my PT told me to have my doctor clear my neck for vertebral artery problems because of this symptom - I told him - and he dismissed it - & he's a very bright doctor. I don't know why he dismissed it - but he simply said nothing and moved onto the next topic when I said, "when I had my neck CT scan - it went well - but getting up and off the table and for a good hour afterward I was dizzy and nauseated" then I went on to say, "this happened another time when I chiropracter was messing with my neck - when I went to leave the appointment I could barely walk - felt very sick and couldn't even drive home till I sat in the waiting room about 15 minutes"

Well again congratulations on your perseverance - it's so very hard to walk this path of doctors mistreating you...... It'd be nice to have a doc say, "wow - there's one thing I know - and that is that a zebra is a zebra....& you are.... a zebra.... so let's get some studies done to add clarity to our situation"

Congrat's Potsymom. Well done!

This thread has made me think: I have 'wisps' of nausea from time to time. I have that typical out of body experience others report when turning a corner or stopping in a car. I have tested my pulse from lying to standing and it varies between 25 - 29 points. I get woozy occasional when I move my head left to right. It doesn't seem severe so I never considered it true POTS ... Just POTS like (occasionally dizzy from sitting to standing).

The more intense symptoms i control by avoiding them. One involves the tension in my neck for a CT scan of my sinus passages. I had to roll off the table and hold onto the floor... severely nauseated, had vertigo and was breaking out in a swear. It took a while to stand up. If I do a lunge stretch and roll my head towards my chest, I wil nearly pass out when I begin to lift my head... Causing me to fall to the floor involuntarily with compete weakness and disorientation .... for about 8-10 seconds.

Are these CCVI issues? I'm very curious because I have a left eye issue (mostly retinal) the defies diagnosis. There is a strong feeling that there is some vascular factor contributing to the issue.

Sorry if this takes was from the point of your thread. Please respond online

Dear Dessert1st:

MRI/MRV is no different from a regular MRI its just they inject you with, I think, gallium as a contrast agent. They time it so it show the veins. My daughter was thought to have had strokes but they never showed up on x ray. Her symptoms are all of autonomic dysfunction. She has POTS, gastroparesis, dumping syndrome, mast cell activation, dermographia, nausea, temperature regulation problems, and medication sensitivities. Her unifying diagnosis is EDS lll. She also had a PFO, hole in the heart. The EDS is thought to have cause the vasculature problem, possible from C1 compressing on the vertebra. It could also be a valve problem. The vein problem was found while looking for a vertebral artery problem. We pushed for tests because she cannot look left without reproduction of extreme nausea and tremor and much of the above problems. She also go significantly worse after her head was held in extension for two different surgeries. She too had two days of nausea and weakness after an MRI where her head was in slight extension.

Dear Ehdosomething:

It is not normal to almost pass out with moving your head. You need to pursue this and don't quit until things are ruled out. It has been 4 years to get a diagnosis and I work in medicine. I can't imagine how frustrating it must be to not have that connection. The best thing is to Google "CCSVI" and I would recommend Prettyill.com for more about CCSVI.

To whatever doctor approved the testing and gave the proper diagnosis.. hats off! That doctor did a fabulous job! Sometimes it takes a few doctors to get the right diagnosis.. and other times it just takes one...

Actually my daughter and I found it through internet searches and reading Dr. Diana's theory and then persistence! We have a wonderful internist who listens, is not dismissive, and is very smart. He made the referrals after our thoughts on her illness were presented to him. He is a one of a kind doctor!

That is great news! I have spoken to Dr. Dake (he is one smart guy!) -- you made a great choice, there. If anyone has questions about CCSVI, there's lots on info on my Prettyill site, as well as in The Driscoll Theory.

Strangely, I knew I needed CCSVI angioplasty before I'd ever heard of it. I knew I wasn't draining fluid well out of my head (I could feel the pressure and had all of the symptoms of high intracranial pressure without papilledema -- swelling of the optic nerve head). I had slam dunk CCSVI and was treated for it via angioplasty.

Please, please, please be sure you are fully treated for mast cells prior to angioplasty, though, as I believe those little boogers may be a big reason we tend to restenose.

Please keep us posted! I will be speaking (as will Dr. Dake) in February at the ISNVD meeting in Florida. I am deeply honored and can hardly wait to mingle with the great minds involved in CCSVI. Things are changing quickly, my friends! All of us will benefit, too. You can't beat that!

:) Diana

@Ehdosomething My ears perked up when you mentioned eye issues, mainly retinal. The changes in the back of our eyes (the fundus) and the vessels there what got me started down my research path with pressure abnormalities, vessel abnormalities (including CCSVI) and our not uncommon slide toward M.S.

Can you share with us (or in a PM) what retinal issues you have? I AM curious, but I also may be able to help you with that.

Thanks so much! :)

Hi,

Will PM as this thread is public

Diana, surely you didn't mean to imply that MS is anywhere near inevitable in those cases? (I'm sure you wouldn't want to cause any fear or panic over a slip of the keyboard.)

Potsymom, are you SURE it's not normal to almost pass out by a movement of the head???? Don't you really want to rethink that one? Cuz I've told many a Harvard teaching MD about it and they seem to think it is just fine. I'm they hail from the best: Columbia, Harvard, Tufts, Stanford. Not one of them has said, "oh my, that's not normal".

(I hope my sarcastic humor is coming through loud and clear. I wish I could yell in their ears, IT IS ABNORMAL YOU NINNY!!! But when they are quicker to see the patient's complaining as something diagnosable rather than what they are complaining about... Well, what is one to do about it? One does get worn down. I'm sure you know the story.)

My suggestion is to play the Doctor game. We learned it through this whole process:

1) Don't mention the Internet it makes them bristle from the minute you mention the word.

2) Don't underplay or overplay your symptoms, too dramatic you are psyche and too passive they will give you a sugar pill and out the door you go!

3) Make a one page (preferably) history, include the most pertinent information, the more objective the better.

4) Challenge any dismissal they give you. In other words stand up for yourself, remember they are working for you.

5) If you have to do the above you should walk out the door.

6) Where they went to college doesn't matter... They may have been last in their class and Daddy may have had the money to buy their way into the private institution.

7) Use forums to seek out the best MD's.

8) Find a smart and compassionate Internal medicine MD to coordinate your care and help you get the referrals you need.

Good luck!

Agreed!

Although - do be wary of forums and take your referrals from actual patients, preferably several patients. Sometimes, the famous doc is simply the one that got a journal article or position paper published or who self-published and promoted a book. And it's not that unusual for patient forums to be inhabited by both people who aren't qualified at all, and people who have PhD's that do not qualify them to have anything more than a personal opinion or theory, just like the rest of us. Check around and use your head, just like you would if you were getting you car repaired.

Potsymom- I like you on the soapbox, and LOVE your suggestions. Your daughter has certainly been dealt some really tough stuff, but she hit the jackpot having you for her advocate and mother. Hats off to YOU!

Unhinged