Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Loobie · Post by **Loobie** » Fri May 01, 2009 5:57 pm

Wobbly,
You are killing me!

Sharon · Post by **Sharon** » Fri May 01, 2009 7:09 pm

wobbly - thanks for the info - a glass of wine on the plane going home sounds like a great idea! Glad you are well - sounds like we will have a "venous groupie" here on thisisms in a short time.

chrishasms · Post by **chrishasms** » Fri May 01, 2009 7:17 pm

Ugh, sorry Sharon lol. I just got it at 9:17 lol...Monday it 'tis!

peekaboo · Post by **peekaboo** » Sat May 02, 2009 5:41 am

chris-

did you get an appt.?

Sharon · Post by **Sharon** » Sat May 02, 2009 7:55 am

FYI for those going to Stanford, Angela (Dr. Dake's assistant) said most of the hotels/motels will give a discount if you are going to the hospital. She will email you a list of the hotels in the area. Also, I was concerned about the plane reservations - Angela has that covered also. If you need to stay longer, she will write a letter and notify airline so that you do not get charged the change fee.

Angela, if you are lurking on the site, thanks for your support and kindness.

Sharon

chrishasms · Post by **chrishasms** » Sat May 02, 2009 9:18 am

If you can at all do it go Southwest Air. To San Jose or San Fran fair is 69 one way from Denver anyhow. I do know they are the cheapest to fly. I use them every time I go to JH and I love them.

cheerleader · Post by **cheerleader** » Sat May 02, 2009 9:31 am

San Jose is a bit closer than SF. Cab fare was $55 each way or you could rent a car. Jeff's hotel is close to the med center (1/2 mile), so he can walk over Tuesday morning.
AC

chrishasms · Post by **chrishasms** » Sat May 02, 2009 10:31 am

I just did some rental car searches for San Jose and Alamo is by far the cheapest way to go. 3 days with GPS and fully insured for 155...everyone else and I am pretty sure I got them all...was around 250 or more.

peekaboo · Post by **peekaboo** » Sat May 02, 2009 5:30 pm

I am so excited...giggly, over excited...overly talkative i am in euphoria...yes but if i do not have stenosis ....i will only cry the same tune ....

Sharon · Post by **Sharon** » Sat May 02, 2009 5:51 pm

Hey, thanks Cheer and Chris -

I was thinking San Francisco, but the airfares went up today. San Jose is cheaper and since I did not look at a map, I had no idea it was closer

chrishasms · Post by **chrishasms** » Sun May 03, 2009 7:09 am

I was all giddy after my treatment too. I am not giddy about this. I have long passed the giddy stage for anything medical lol.

mrhodes40 · Post by **mrhodes40** » Sun May 03, 2009 7:13 am

This is all very exciting and as this work goes forward it will mean a lot to everyone.

MS research is critically important. Yesterday I was thinking how much it means to little Landry

, she has no idea.

But I am DEEPLY distressed by something and I am going to step right up and say it:

Chris, you are in a trial for Revimmune and should not seek this treatment.

From chrishadms on friday

Everyone seems to think I may run again. I just want to be able to live healthy and finish up any loose ends I still have from when I still had MS...........
and
Today, I can stand up with my eyes closed, my bladder works great and my urgency is improving because I am working on it, -oh I stand again to pee lol, I stand in the shower, rarely take a nap even if I am tired, no longer use glasses, have no issues remembering anything now, mood swings have stopped, still pop of a twitch every so often( 1 or 2 per 2 week period) but not daily for hours at a time, spasticity has let up but is still there but it allows me to walk and stand now, and am happy to say I am patiently waiting for Monday so I can continue to improve and live my life.

Wow am I glad God helped me find Dr. Kerr by putting Brett there for me.

and

I am in the phase 2 trial but Johns Hopkins is putting people through this off label as fast as they can. Go to the HiCy section of my site and get the contact info and see if you qualify. It’s covered by insurance

When you are a trial subject you cannot seek a second trial treatment; it corrupts the data.

You couldn't possibly know, and neither could Dr Kerr, if you are better because of Revimmune or if in fact you are better because of CCSVI treatment by Dr Dake.

If you do a lot better after treatment by Dr Dake, you will suspect it has something to do with the combination rather than giving Dr Dake the credit he deserves in that situation. It is simply not fair to Dr Dake's research

Unless you have been discharged from the Revimune trial by Dr Kerr and have had a final evaluation, it is unethical to seek a second experimental treatment unless all the doctors agree they are interested in doing a combination trial. At this point that is unlikely; they're still trying to see if this works by itself.

Furthermore I feel it is important in your case because of the platform you have created for yourself regarding Revimune, that you not move on until you have decided revimmune did NOT work and say so to people following your progress. That would be hard to do, but it is the ethical thing to do.

It would be wrong to attempt to walk some kind of razors edge and say that the combination is the key to healing when you could have no idea how you'd have been with JUST ccsvi surgery. It may be that such combination is the best approach, but that is for the researchers in the field to decide as the research goes forward, at this point these therapies need to be trialed for themselves.

I believe you have a big heart and have been recommending Revimmune because you sincerely believe it is best for everyone and you believe the "reboot" paradigm is a superb way to go. Frankly if I had had hicy, I'd be sitting in my reboot waiting for this other research to play out. It is the best autoimmune thing going to me. It sounds like you are doing well and think hicy reversed your MS. It is also clear that you really like the docs at JH and really want to see them succeed, and I believe you really want to see other patients like yourself see success too. I mean that, you are a likable guy and I want you to have the best possible treatment for you.

But you must be honest with everyone that you have pulled in to the Revimmune paradigm, including yourself.

If what is true for you is that hicy did not work as you hoped and you actually need something new you need to say so, and have a deep conversation with Dr Kerr about your need to move on and what needs to happen at this point to close that loop.

I had to make a post explaining that abx did not stop MS progression for me too.

I've had to answer countless pm's from people checking in with me later who read my old material too. I know how that feels, so I am walking my talk.

I really mean this from the bottom of my heart, I wish you every success and the best possible treatment for your situation, but you need to do some deep thinking about what you are willing to do.

my intention is to protect the integrity of the research for everyone with MS, not to hurt you Chris. I mean well too......... Please understand it in the spirit intended

cheerleader · Post by **cheerleader** » Sun May 03, 2009 7:58 am

Marie...
I think you bring up a really important point. I know that Dr. Zamboni made a point of stating that there was no difference in the MS patients he tested, whether they had received any immune modulating treatments or not, they all had stenosis. Jeff's on copaxone, but he had stenosis.

Chris, your case is different, because you are still seeking experimental treatment from JH. Receiving a diagnosis of CCSVI and having a stent put in would certainly change your status, and corrupt JH's research....you should clear this all with Dr. Kerr, and make sure he's onboard.

That said, if you do have stenosis, even after a complete immune ablation, I think we can pretty much concur that these stenosis are not related to autoimmunity.
AC

patientx · Post by **patientx** » Sun May 03, 2009 8:09 am

I understand the point you guys are making, but I'd just want to point out that the Revimmune isn't officially in clinical trials yet. The patients who have received it so far have done so off-label, and have paid for it. From what I understand, there's no frequent return visits to assess disability score, MRI, etc. like in other trials.

Having said that, I agree with your posts. If I had the Revimmune treatment, I think I would wait and see how the treatment worked. Though having the vascular scans might be interesting.

mommasan · Post by **mommasan** » Sun May 03, 2009 9:01 am

When I brought up to Dr. Hammond that I wasn't sure whether he would prescribe 4-AP for me because it could cloud the Revimmune data, he said that the data didn't matter to him. Getting us better was their only priority.