Experiences/Thoughts about the Hubbard Foundation

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

Experiences/Thoughts about the Hubbard Foundation

Postby WinnipegGirl_83 » Wed Jan 05, 2011 11:34 pm

I had my first procedure in Egypt about 5 months ago. I feel strongly that I have re-stenosed, but for (hopefully) the second procedure I would like to stay closer to home.

I sent my forms to the Hubbard Foundation today...I would love to hear anyones experiences there. I have been searching online but haven't come across a whole lot.

Thank-you so much! :D
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Postby DrCumming » Thu Jan 06, 2011 7:09 am

if you want, we are seeing patients in Minneapolis.

http://www.thisisms.com/ftopic-14828-15.html


we are working towards being part of the Hubbard registry.
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Postby Cece » Thu Jan 06, 2011 9:28 am

It is disappointing to hear of patients treated in Egypt restenosing! That is Dr. Sinan, of the big balloons and (hopefully) very low restenosis rates.

Welcome to the forum, Winnipeg Girl.

If you use the search function at the top of the page and enter "Hubbard" you might find some patient accounts. Garyak, I believe, was treated there. Dr. Hubbard is the neurologist, his patients are treated at Del Mar Vein clinic, but I am blanking on the name of the IR.

Another good place to check is the facebook site, both Arlene Hubbard and Devin Hubbard have good presences there.

Dr. Cumming here in MN and Dr. Makris out in Chicago are our two new Midwest treatment options. :D
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Postby DrCumming » Thu Jan 06, 2011 12:19 pm

Cece wrote:It is disappointing to hear of patients treated in Egypt restenosing! That is Dr. Sinan, of the big balloons and (hopefully) very low restenosis rates.

Welcome to the forum, Winnipeg Girl.

If you use the search function at the top of the page and enter "Hubbard" you might find some patient accounts. Garyak, I believe, was treated there. Dr. Hubbard is the neurologist, his patients are treated at Del Mar Vein clinic, but I am blanking on the name of the IR.

Another good place to check is the facebook site, both Arlene Hubbard and Devin Hubbard have good presences there.

Dr. Cumming here in MN and Dr. Makris out in Chicago are our two new Midwest treatment options. :D


Cece, I am still not convinced bigger is better. If the veins are aggressively overly dilated, I think this will cause a more aggressive healing response leading to restenosis. Balloon sizing needs to be better addressed.
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Postby David1949 » Thu Jan 06, 2011 3:42 pm

WinnipegGirl, may I ask a few questions?
Were you treated by Dr. Sinan?
Did he use large balloons maybe 15 to 18mm in diameter?
Did he also treat the azygous vein?

I hope you don't mind me asking, but those things are of interest here because we are under the impression that Dr. Sinan is having success using his techniques. Although I'm not sure he was using large balloons 5 months ago when you were treated.
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Postby WinnipegGirl_83 » Thu Jan 06, 2011 3:44 pm

Thanks Cece! I have searched all of the places you mentioned frequently over the last year or so. My lack of posting does not reflect the hours I spend online :)

Is Dr. Cummings a good option? Haven't heard much about him.
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Postby WinnipegGirl_83 » Thu Jan 06, 2011 3:50 pm

Hi David,

Yes, I was treated by Dr. Sinan, he did treat my azygous vein, I know for sure he used 18mm balloons and a cutting balloon.

I did not receive a written description of the details of my procedure, but I am quite certain he used a balloon in the 20 mm range. However, with that being said my memory is not 100% and I could have been confusing that with something else.
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Postby marcstck » Thu Jan 06, 2011 5:43 pm

I saw Dr. Sinan give his presentation that Dr. Sclafani's symposium in July. At that time, he had already made extensive use of larger balloons, so a procedure done five months ago would have included the use of big balloons.

I spoke with Dr. Arata at Pacific Interventionalists last week, and was very much impressed. They are located in San Diego, but are not affiliated with the Hubbard Foundation. PI is using larger balloons, and are focused mainly on addressing valves in the jugular and azygous, as they believe that most stenosis has its roots in valve problems…

Dr. Arata indicated that they were seeing restenosis rates in the single digits…

BTW, I spoke to Dr. Arata for research purposes only. I'm not considering making the cross-country journey, and will instead probably undergo another procedure with Dr. Sclafani…
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Postby Cece » Thu Jan 06, 2011 5:48 pm

marcstck wrote:Dr. Arata indicated that they were seeing restenosis rates in the single digits…

They were saying 0%, now they are saying 1%.

There was so much that came out of the symposium back in July, I'm hoping for similar when all the docs get together at ISET later this month.

Hope the good doctor will be able to work some magic with his second go, Marc. All the best.
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Postby ikulo » Thu Jan 06, 2011 7:16 pm

marcstck wrote:
I spoke with Dr. Arata at Pacific Interventionalists last week, and was very much impressed.


I would love to know more details about your conversation! Can we look forward to it in a future blog post?
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Postby WinnipegGirl_83 » Thu Jan 06, 2011 7:35 pm

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
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Postby marcstck » Fri Jan 07, 2011 12:06 am

Cece wrote:Hope the good doctor will be able to work some magic with his second go, Marc. All the best.


Thanks for the well wishes Cece. I'm hopeful he'll be able to do some good this time around…
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Postby marcstck » Fri Jan 07, 2011 12:11 am

ikulo wrote:I would love to know more details about your conversation! Can we look forward to it in a future blog post?


Don't know that much of the conversation will make it into a blog post, a friend put me in touch with Dr. Arata regarding my muscle bundle issue (my major source of blockage in my jugular is a muscle bundle external to the vein pressing in on the vessel).

Dr. Arata told me that he sees this malformation fairly frequently, and that clearing up valve issues very often increases the flow well enough to make the muscle impingement a nonissue.

We then had a nice discussion on the general state of CCSVI, and the different directions the research may lead. Dr. Arata was very generous with his time, and seemed very dedicated to the cause…
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Postby marcstck » Fri Jan 07, 2011 12:14 am

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


Sorry, I don't know what PI charges. I have to imagine most of these places are charging similar rates, as competition is heating up. I don't know much about Dr. Cumming at all.

Thanks for your lovely words regarding my blog, they're very much appreciated. The fact that my words have reached out through the Internet to touch so many people is amazing and humbling. I only wish the topics I write about were more pleasant…
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Postby David1949 » Fri Jan 07, 2011 1:58 pm

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.
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