Experiences/Thoughts about the Hubbard Foundation

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

Postby CenterOfGravity » Fri Jan 07, 2011 2:52 pm

WinnipegGirl_83 wrote:Thanks Marc! do you have any idea what PI is charging for the procedure? I spoke with a lady from Dr. Cumming's office this afternoon, have you heard of him? he is based out of MN.

On another note, thank-you for your writings on your blog...I have shared many laughs and tears with myself as a result of such eloquent pieces of text. I tell my husband that nobody can say it better than you :D

Thanks for taking the time to write. I appreciate it very much

WinnepegGirl_83, I don't know anything about Dr. Cummings, but I believe is is the poster mjc701 who has posted on this thread! He's also been part of the discussion on a thread that carries his name. I don't know about everyone else, but it sure is quite neat to see doctors so committed to this that they participate here.
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Postby Cece » Sun Jan 09, 2011 10:28 am

CenterOfGravity wrote:I don't know about everyone else, but it sure is quite neat to see doctors so committed to this that they participate here.

I agree with this 100% and more. :)

I answered Winnipeg Girl's question by pm. I think choosing what doctor to go with is the biggest choice we make, after choosing to get the treatment! And all the doctors have made some different choices in how they treat, which all have pluses and minuses. But Dr. Cumming is very personable. I like his choice of Lovenox for anticoagulation. If you don't want the more aggressive methods (how did he put it exactly?) his choices are aggressive enough to get the job done but not overly so.
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Postby IrinaS » Sun Jan 09, 2011 11:27 am

Winnipeg Girl,

I recently had venoplasty through the Hubbard foundation ( in December). It took two months from the time I contacted them to the time of the surgery. Follow the requirements on their website and they will contact you with more information. I live in San Francisco, so San Diego was the best choice for me. I'm not sure what else you want to know about it but I'll be happy to share more information with you.

Irina
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Postby WinnipegGirl_83 » Sun Jan 09, 2011 7:16 pm

Thanks Cece, Irina and CentreofGravity,

Is it not possible for any IR to perform this procedure? Do you have to be an expert? Obviously, the more knowledge the better, but isn't the procedure fairly uniform across the globe?

Being from Canada this is an out of pocket expense as well, $15 000 the first time, fairly similiar the second time...I hope my second procedure holds. With that being said, I have my fingers crossed I can even be treated this time around.
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Postby magoo » Mon Jan 10, 2011 8:53 am

I would really like to know more about Hubbard and the experience. Wasn't there a 2 week period between scans and treatment? Isn't this so they could send scans to Haake to interpret? Have they changed this? Someone I know went and was told the scans weren't important because everyone gets treatment.
Please someone with experience please tell your story.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby IrinaS » Mon Jan 10, 2011 8:38 pm

Hi Rhonda,

Here is my experience with the Hubbard foundation.
As I mentioned before, I live in San Francisco and wanted to take part in a study in Stanford ( very close for me) but they didn’t know when they will start a study. I would like to be part of a study because I feel there is a lot that needs to be cleared to make this a real success. http://www.clinicaltrials.gov/ct2/show/ ... svi&rank=1
I contacted the Hubbard foundation and after two months they called me with date for diagnostic test and angio. Initially, they used to do one MRV the first day, then the surgery next day and final MRV to show that the there are no further blockage. Few days before I went to San Diego, they called me to tell me that they no longer do the final MRV since they have collected all data they needed. Too bad that dropping the second MRV didn’t change the price ;).
On December 22 I had the scan that took 2 hours and I was told that the IR will review the scans before the surgery the next day. I found the technician doing the scans quite rude and disinterested.
The next day I went to Del Mar ( where IR clinic is) and got ready for the surgery before the IR arrive. I thought it is strange that they will go ahead with that without looking at the scans and started questioning the purpose of the scan the previous day ( and the 3500). Sure enough, the IR came and started the conversation what to expect during the procedure without looking the scans. When I asked hi mif he needs to see the scans he said that these scans don’t tell you much, just if there is abnormal blood flow, but not where and how much. So, the actual determination if and where to treat is done during the surgery. They did three balloon dilations on the Right and Left Jun and the Azygos vein. The actual procedure was done very professionally and with no complications and pain. I stayed there for 4 hours and went back to the hotel. The next day I drove back to San Francisco.
After two weeks, I received the MRV report that was somewhat different than what the IR found. Not sure what to think about it .I did fill out a questionnaire when I went the first day and I was told that this is the way they track the progress and results with each patient. Seems insufficient to me but that is their protocol. Additional MRV is not covered by the initial cost and I’m not planning to have follow up test.
It’s been almost three weeks and I don’t have any changes in my symptoms. I had very bad headache the first 4 days after the surgery. Other than that, I can say I feel any improvement. I don’t have the symptoms that are most likely to improve after the venoplasty like brain fog, fatigue or heat sensitivity. That is one of the reason I would like to be in a study because I believe that MS is so different that this procedure might be helpful to only particular group. I’m 37, have had pretty aggressive MS for 16 years and I would have loved to have at least a placebo effect. I hope that may be the future will bring some improvements.
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Postby drsclafani » Tue Jan 11, 2011 9:23 pm

David1949 wrote:Thankyou WinnipegGirl and Marc for the info. That's good information but somewhat disappointing. Apparently opening the valves with large balloons is not as successful at reducing restenosis as we originally thought. Kathleen who was also treated by Dr. Sinan restenosed recently too. Fortunately she has been re-liberated with good results.

It really seems strange to me that our veins should be so determined to close themselves off. Yes I know we've talked about elastic recoil, thrombosis and intimal hyperplasia. But these valves were forced open by intentionally damaging them. How do they manage to close off again? Are these abnormalities really congenital or is there something which causes these things to develop over time? And if we can identify that "something" could we stop it from happening?

Wish I had another 100 points on my IQ.


For the record, there is more than one variable regarding dr sinan's techniques. Not only was he using large balloons he was using a "poor man's" cutting balloon technique, whwere he place 1-2 wires along the wall and then inflated the balloon and pulled the wire down in order to "score" the intimal. This makes me surmise the following:
1. He was not using high pressure balloons
2. he was not getting adequate outcomes from his large balloons by themselves.
3. This suggests that his balloons were of relatively low pressure.

Thus we cannot tell whether his restenosis rate results from intimal hyperplasia, possibly exacerbated by the cutting techniques or from elastic recoil from incomplete stretch of the annular stenosis at the valve annulus related to insufficient pressure to break the annulus. (actually, we dont know what his restenosis rate is, do we?)

Dr cummings, i have found that the vein often easily distends to 14-18 mm with balloon dilatation with less than one atmosphere of pressure. it is the stenosis that does not and which is stretched, hopefully beyond elastic recoil. in the few patients i have treated after restenosis of another doctor's procedure, i have found what appears to be elastic recoil, namely narrowing at the exact original site of stenosis. While this could be intimal hyperplasia or scarring, i fell fairly confident that the appearance is just at the site of stretch, often the site of the valve apparatus.
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Postby Cece » Wed Jan 12, 2011 8:09 am

WinnipegGirl_83 wrote:Thanks Cece, Irina and CentreofGravity,

Is it not possible for any IR to perform this procedure? Do you have to be an expert? Obviously, the more knowledge the better, but isn't the procedure fairly uniform across the globe?

Being from Canada this is an out of pocket expense as well, $15 000 the first time, fairly similiar the second time...I hope my second procedure holds. With that being said, I have my fingers crossed I can even be treated this time around.

That is so expensive. :(

Yes, any IR can perform the procedure. I have been paying attention to the various docs methods, they're all doing things differently. (omg) (Lyon, you still around? You've been sparse as of late.) There's not much science or research to recommend one method or another, so it's all clinical knowledge and it can be a tough call.

Let's see. You originally went to Dr. Sinan. You may have had large balloons but at normal pressures and nearly the highest degree of blood thinners that any of the docs are doing (Clexane, plavix and aspirin - would love for this to be reconfirmed?). With all those thinners, it's not certain but there would seem to be less chance of clotting as the cause of restenosis. You were treated by a doctor with many many procedures under his belt. But it may have been a short procedure, I have heard from a patient that he does 5 - 6 per day when he's in Egypt (anyone can confirm?).

So if you look for a doctor who does the things Dr. Sinan didn't, you'd be looking for a doctor who uses the high pressure balloons and spends a lengthier amount of time on each patient so perhaps anything missed in the first procedure would be found in the second. If we assume restenosis is due to elastic recoil, it also seems that doing the same thing again would result in the same results, although that too isn't known.

Some concerns would be if you can't risk having to pay for a third procedure (then go for the more aggressive methods) or if you are worried about any risks from the high pressure balloons (then go for less aggressive). Dr. Sinan's methods were already on the aggressive side and failed to have 'durable' results.

IMO things to avoid would be doctors who use stents and doctors who do not prescribe true anticoagulants. My opinion is that both of those increase the risk too high.

I wish the decision were easier. Not sure if I have been any help!
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Postby WinnipegGirl_83 » Wed Jan 12, 2011 10:53 pm

Hi Cece,

Yes, I took Clexane, Plavix, and aspirin. My procedure took 2.5 hours. After showing another IR from the U.S my venogram images, before and after the procedure, he confirmed for me that it was quality work.

I am happy with Dr. Sinan's work. His team was wonderful too. Like I said this is more about location and proximity to our hometown. I would go back if it was not sooo far away.

I can't second guess the choices I have made...I feel I made knowledgeable decisions based on the information available at the time.

Dr. Sinan does about 5 patients a day the last time I checked. They work from morning until night.

I hope I have answered all of your q's. I feel as though I am rambling here. Thanks again for responding and for opinions, thoughts, and expertise.
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Postby Cece » Thu Jan 13, 2011 7:18 am

Yes, Winnipeg Girl, Dr. Sinan is one of the best in the world at this, in my opinion!
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Postby Vivianne766 » Thu Jan 27, 2011 5:46 pm

IrinaS wrote:Hi Rhonda,

Here is my experience with the Hubbard foundation.
As I mentioned before, I live in San Francisco and wanted to take part in a study in Stanford ( very close for me) but they didn’t know when they will start a study. I would like to be part of a study because I feel there is a lot that needs to be cleared to make this a real success. http://www.clinicaltrials.gov/ct2/show/ ... svi&rank=1
I contacted the Hubbard foundation and after two months they called me with date for diagnostic test and angio. Initially, they used to do one MRV the first day, then the surgery next day and final MRV to show that the there are no further blockage. Few days before I went to San Diego, they called me to tell me that they no longer do the final MRV since they have collected all data they needed. Too bad that dropping the second MRV didn’t change the price ;).
On December 22 I had the scan that took 2 hours and I was told that the IR will review the scans before the surgery the next day. I found the technician doing the scans quite rude and disinterested.
The next day I went to Del Mar ( where IR clinic is) and got ready for the surgery before the IR arrive. I thought it is strange that they will go ahead with that without looking at the scans and started questioning the purpose of the scan the previous day ( and the 3500). Sure enough, the IR came and started the conversation what to expect during the procedure without looking the scans. When I asked hi mif he needs to see the scans he said that these scans don’t tell you much, just if there is abnormal blood flow, but not where and how much. So, the actual determination if and where to treat is done during the surgery. They did three balloon dilations on the Right and Left Jun and the Azygos vein. The actual procedure was done very professionally and with no complications and pain. I stayed there for 4 hours and went back to the hotel. The next day I drove back to San Francisco.
After two weeks, I received the MRV report that was somewhat different than what the IR found. Not sure what to think about it .I did fill out a questionnaire when I went the first day and I was told that this is the way they track the progress and results with each patient. Seems insufficient to me but that is their protocol. Additional MRV is not covered by the initial cost and I’m not planning to have follow up test.
It’s been almost three weeks and I don’t have any changes in my symptoms. I had very bad headache the first 4 days after the surgery. Other than that, I can say I feel any improvement. I don’t have the symptoms that are most likely to improve after the venoplasty like brain fog, fatigue or heat sensitivity. That is one of the reason I would like to be in a study because I believe that MS is so different that this procedure might be helpful to only particular group. I’m 37, have had pretty aggressive MS for 16 years and I would have loved to have at least a placebo effect. I hope that may be the future will bring some improvements.



IrinaS,
I had the same experience with Dr. Siskin's team in Albany. Just that they did not bother to do any test/scans before. No questionaries. The technician was kinda rude and stupid. The doctor did not seem to be interested on how the procedure worked for me. (the doctor was very nice though ) ...anyway... I am not happy.
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