Fingers crossed!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Fingers crossed!

Postby BooBear » Tue Jun 01, 2010 11:20 am

While I wait on Albany, I started emailing and calling IRs and vascular surgeons (again). Instead of approaching from a CCSVI angle this time, however, I simply asked if they could test for venous reflux in the IJV and Azygous vein as well as treat same if stenosis was found.

I got a reply! One doctor has replied that he can perform the testing of the IJVs, but not the azygous- but it is a start. He can also perform a venography.

I am waiting to hear if he requires a referral or if I can just set an appointment. Fingers crossed, fingers crossed!
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Postby Cece » Tue Jun 01, 2010 11:30 am

BooBear, keep us posted on this...I like your approach, simple and (maybe) effective!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby BooBear » Tue Jun 01, 2010 1:12 pm

I am waiting for the office to call me back to set up the appointment, but only because they want to talk to the doctor directly to see how much time he wants for the appointment.

I am very, very excited! I only hope that a referral is not needed, but if so, I will try to get one from my GP.

My hubby asked if I would be satisfied if it were just a test and not treatment. I said yes; at least it gets me in his office to have the discussion. If he inserts a catheter to perform a venography, well, for heaven's sake stick a balloon up there while you are at it! :)

If nothing else, I will have data. That is more than I have now.

I will definately keep you all posted!
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Postby ikulo » Tue Jun 01, 2010 1:47 pm

BooBear, thanks for posting this! I was just about to get on the phone today, but I wasn't sure if IRs took appointments or if they just did the diagnostic testing. Did the doctor as you why you wanted to be tested? I feel like I need a reason, but don't want to mention CCSVI or MS. I'm just looking to get an MRV (since my ultrasound came out clean).
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Postby BooBear » Wed Jun 02, 2010 3:57 am

The doctor did not ask me for a reason for my tests. Maybe the very specific testing questions I asked made him assume that I was already diagnosed with something. :)

I am sure he will ask me for a reason at some point. I plan to relay my symptoms and my father's venous issues (as those are true). If he asks about MS, I won't lie...but my goal is to avoid the question altogether.

My only regret is that we won't get further exposure to data by going this "back alley" route. But, we have to live with the disease; at the rate that I am progressing based upon my MRIs, I can't afford to wait.
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Postby elyse_peace » Wed Jun 02, 2010 4:46 am

BooBear,
Nice work! Very impressive. Great approach -- UNDERCOVER !!! Love it!
Wishing you equally great results. :)
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Postby BooBear » Wed Jun 02, 2010 8:57 am

Ok, so we have an update.

I have an appointment for a consult with the IR next Monday, first thing in the morning. We may do an ultrasound test that same morning.

Now I really have to think. What do I do? What do I say? I am excited to have this opportunity, but I am also scared to be turned away.

Do I bring up CCSVI? Like, maybe, casually? ("Here's a paper a friend gave me on CCSVI. Could this be it, nice Dr.?") Or do I just let him do his thing with the ultrasound and see if we can get a venography out of him?

Advice welcomed!
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Postby Cece » Wed Jun 02, 2010 9:14 am

I don't know...you seem to be doing great without advice so far!! Do your symptoms include swelling, headache, and neck pain?

As long as your doctor is treating you as an individual, not as a member of the MS cohort, he has more leeway to treat what ails you without the need for research upon research. But it is also good to be honest with doctors.

I guess I might be like: I had these symptoms (headache, neck pain, swelling), and when I heard about CCSVI, I wondered if there might be a connection, and so here I am. 8)
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Postby FlashHack » Wed Jun 02, 2010 9:35 am

BooBear,
I would suggest being very up-front about your MS and what you are looking for including bringing Zamboni's paper to the doctor's attention and walking through it with him (especially Table III that covers the incidence of the various types of malformations). I know there is the fear of getting the door slammed in your face and wanting to be on the down-low, but there is also the possibility of the IR missing something like a blocked valve or septum which is very tough to spot on an MRV because he just didn't know what to look for. The last thing you would want is to go through all the fuss and inflated hope only to get crushed because the IR didn't have a chance to do his homework.

Just the opinion of someone who has been down that dead-end road before.
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Postby BooBear » Wed Jun 02, 2010 9:40 am

Thanks, Cece and Flash, for your (diverse- LOL) advice.

Maybe I can have a hybrid plan.

1.) I can tell him my symptoms and my familiar history with venous problems.
2.) I will tell him that I have MS and have heard about this new-fangled CCSVI thing and wonder if my symptoms may be caused by venous issues rather than directly due to MS.
3.) I will give him Zamboni's research paper.
4.) I will pray that this does not close the door in my face; I will pray that he looks at this with an open mind and heart and that he will be willing to do this for me, and hopefully, for others.

Again, fingers crossed. Really, really tight!
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Update!

Postby BooBear » Tue Jun 08, 2010 3:22 am

I had my consultation with the local IR yesterday. Only slightly awkward. In his mind, stenosis of the veins is typically associated with a catheter (such as dialysis patients), and when stenosis occurs, "there are almost no symptoms in the patient." Well, no symptoms until he puts the dots together.

I gave him all my CCSVI papers (good idea, Flash, to bring those). He became intrigued. He performed a quick, bedside ultrasound of the jugulars and found nothing, but he did agree to perform a doppler next Monday. He handed his ultrasound technician the documents as well and asked her to follow the protocol for my test.

Any special equipment that he needs and doesn't have on hand will be performed by the hospital. How awesome is that!

Not sure where this will lead; however, if nothing else this visit raised awareness. IRs are not tied to drug companies, so he has nothing to lose with investigating the theory and learning as he goes.

By the way, this IR is well-established. He spent five years at a local hospital working closely with the cardiology department; many of his fellow doctors were on my father's medical team. So, if we show CCSVI to him, we will likely blow his mind and change a lot of what he used to think was true. Let's hope so!
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Postby AMcG » Tue Jun 08, 2010 4:13 am

Excellent news Boo, Well done!
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Postby BooBear » Tue Jun 08, 2010 4:15 am

Thanks, AMcG. The IR had not heard of CCSVI, but he did seem interested once I provided him the papers. I am hopeful!

If this goes anywhere, I will ask him if he wants to treat others. I know a couple of people that may be interested. :)
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Got my Doppler today!

Postby BooBear » Mon Jun 14, 2010 10:12 am

I had my Doppler ultrasound done today- took about an hour. The tech told me that she would forward my results to the doctor; however, she did say that the sounds from the right jugular do not match those in the left. Further, she said that the right jugular did not "pulsate like a normal jugular". She advised that the doctor will likely want to test further.

She stressed that this alone is not indicative of stenosis, but that more investigation is warranted.

She spent quit a bit of time around my right clavicle. Most interesting.

Now to wait on the doctor's call...keep those fingers crossed!!!
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Postby Cece » Mon Jun 14, 2010 10:42 am

Boobear this is fantastic!!! I think this is a new approach...first just asking about if they treat jugular stenosis, then discussing it in further depth at the appointment!! It at least gets you in the door! And before I wear out my use of exclamation marks, I am very happy to hear that she may well have found a stenosis...in the right jugular near where it meets the subclavian vein...exactly where Dr. Sclafani says he finds many problems!!! :D
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